ABSTRACT

PHYSICAL AND PSYCHOLOGICAL DEVELOPMENT
OF CHILDREN WITH CONGENITAL HEART DISEASE

By

Thomas Taflan-Barrett

The present study examines the effect of congenital heart disease
on a child's physical and psychological development. Fourteen children
with histories of chronic congestive heart failure, thirteen with
chronic cyanosis, seventeen with serious heart disease without chronic
symptoms, and fourteen with insignificant heart disease formed the four
main sample groupings.

The assessment of each child consisted of an interview with one or
both parents, followed by the recording of height, weight, and head
circumference measurements and the administration of a battery of psy-
chological tests. Children younger than 30 months were assessed using
the Bayley Scales of Infant Development--Mental Scale and Motor Scale,
and the Denver Developmental Screening Test. Children older than 30
months were assessed using the Stanford-Binet Intelligence Scale and
the Denver Developmental Screening Test (if younger than six years of
age).

During the parent interview, family background information and
information regarding the pregnancy and the newborn period was collected.
Each mother was also asked to complete a modification of the Neonatal
Perception Inventory which assesses maternal attitudes regarding the

first six months of her child's life.

It was found that severity of illness did not correlate strongly
with physical development (except with weight gain) or with psychologic-
al development (except with psychomotor functioning). It was expected
that children with histories of chronic congestive heart failure or cy-
anosis would be more physically retarded, on all three measures, and
psychologically delayed, on all psychological indicies.

However, the study did find that, when physical retardation was
observed, regardless of the severity of illness, psychological delays
could also be anticipated.

The study also found no differences between children operated on
using profound hypothermic techniques and those undergoing other pro-
cedures.

The limitations of this study, especially those involving sample
availability and data collection techniques, are discussed. In addition,
suggestions for more extensive, further research in this area are

offered.

Dissertation Committee

Dr. Hiram E. Fitzgerald, Chairperson Approve OV/ngfifi /
Dr. Gilbert W. DeRath Date 1/23 /?¥//

Dr. William Crano

Dr. Albert W. Sparrow

PHYSICAL AND PSYCHOLOGICAL DEVELOPMENT
OF CHILDREN WITH CONGENITAL HEART DISEASE

BY
c595 ‘8‘]—

(
Thomas Taflan-Barrett

A DISSERTATION
Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of
DOCTOR OF PHILOSOPHY
Department of Psychology

1977

DEDICATION

To the Memory of

Michael Brandon

and to my parents,

Ralph and Elizabeth Barrett

ii

ACKNOWLEDGEMENTS

I am grateful to Dr. Hiram Fitzgerald for his support, encourage-
ment, and direction in this research, to Dr. William Crano for his
advice and assistance on statistical matters, and to Dr. Albert Sparrow
for his support and the opportunity to work with he, his patients, and
their families.

I would especially like to thank my sister, Pat Barrett, whose
friendship, assistance and support were invaluable, and Sue Benson,
for her assistance in preparing this manuscript.

As I complete my graduate training, I am especially grateful to
Dr. Gilbert DeRath, Dr. Lucy Ferguson, and Dr. Donald Grummon, for
what I know about psychology, and Dr. Clark Moustakas, Dr. Cereta
Perry, and Dr. Elizabeth Seagull, for what I know about myself.

Finally, I wish especially to thank Joanne, for her continuing

support, warm encouragment, and caring.

iii

TABLE OF CONTENTS

Chapter Page
I. THE PROBLEM.... ............ ..... ..... . ...... . ............. 1
Introduction ........................................... 1
Need....... ............................................ 3
Purpose..... ..................... . ..................... 4
Hypotheses ............................................. 4
Theory.......... ..... . ...... . .......................... 5
Overview................................ ............... 6
II. THE NORMAL HEART AND CONGENITAL HEART DEFECTS.. ............ 7
Patent Ductus Arteriosus (PDA)......... ..... . .......... 12

Septal Defects: Atrial Septal Defect (ASD),

Ventricular Septal Defect (VSD)........... .......... 13
Tranposition of the Great Arteries (TGA).. ............. 15
Pulmonary Atresia (PA)................................. 16
Tricuspid Atresia (TA)........ ......... . ............... 17
Tetralogy of Fallot (TOF).. ...... . ...... ... ............ 18

III. A REVIEW OF THE LITERATURE................................ 20
Growth Failure and its Relation to Congenital
Heart Disease............................... ........ 20
Head Circumference Measurements as an Important
Tbol in the Assessment of Growth Failure............ 30

SWWOOOOOOOOOOOOOI......OOOOOOOOOOOOOOOOO 00000000000 32

IV. DESIGN OF THE STUDY... ............ . ....................... 33
sampleOOOOOOOO0.0.0.0000... ..... ......OOOOOIOOOOOOOOOOO 33
Measures..... ..... ...... ................. . ............. 35
Statistical Analysis .............. ........... .......... 36

v. RESULTSOOOOOOOOOOOOOOOOO......OOOOOOOOOOOOOOOOOO.... ...... 38
Hypothesis Analysis .................................... 38

VI. DISCUSSIONOOOOOOOOO ....................................... 61
Summary of Results......................... ......... ... 61
Limitations of Study ....................... . ........... 62
Recommendations for Future Research .................... 65
BIBLIOGRAPHY... .......... . .......................... . .............. 67

APPENDIX A: Letter of Explanation and Acknowledgement of

Participation Forms ................................ 71
B: Data Collection Form .................................. 74
C: Growth Charts ......................................... 76
D: Bayley Scales of Infant Development ................... 78

iv

Chapter

APPENDIX E:

TABLE OF CONTENTS (continued)

Page
Denver Developmental Screening Test ................... 82
Stanford-Binet Intelligence Scale. .................... 85
Neonatal Perception Inventory... ..... . ................ 87
Cardiac Symptom Groups--Individual Subject Data ....... 92

Growth Percentile Groups--Psychological Assessment
variableSOOOOOOO....00............OOOOOOOOOOOOOO... 102

Children having had Surgery Compared to Children
not having had Surgery—-Physical and Psychological
variwleSOOOOOO0.00.0000.........OOOOOOOOOOOOOOO... 107

Surgery Before One Year of Age Compared to No Surgery
Before One Year--Physical and Psychological
Variables................. ..... ... ..... ... ......... 109

LIST OF TABLES

Number Page
1. Physical Measurement Summary Table........................ 40
2. Psychological Assessment Summary Table.................... 44
3. Psychomotor Assessment Summary Table................ ..... . 47
4. Significant Correlations Between Physical and

Psychological Measurements............................. 50

5. Significant Correlations Between Growth Retardation and
Future Catheterization and Surgery..................... 57

6. Significant Correlations Between Neonatal Variables and
Subsequent Performance on Psychological Tests.... ...... 58
7. Breast-feading as a Function of Birthweight and its

Effects on Future Performance on Psychological Tests... 58

8. Significant Relationships Between Mother's Responses to
the "Own Baby" Rating Scale and Her Child's Surgical
History, Her Husband's Education and Her Own
Employment............................................. 59

9. Significant Correlations Between Planned Pregnancies and
Parent's Educational Level and Father's 0ccupation..... 60

10. Individual Subject Data Values--Family Information
variableSOOOOOOOOOOOO0.00.00.0000.........IOOOOOOOOOI.0 92

11. Individual Subject Data Values-—Neonata1 Information
Variables ...... .. ..... ... .......... ............ ....... 94
12. Individual Subject Data Values--Catheterization and

Surgery Variables..................................... 96

13. Individual Subject Data Values--Physica1 Measurement
Information Variables........... ...... ................ 98
14. Individual Subject Data Values—-Psychologica1 Assessment
Variables .......... . .............. ............. ....... 100
15. Weight Percentile Groups--Psychological Assessment
Variables..... ........................ .. .............. 102
16. Height Percentile Groups-~Psychological Assessment
Variables ............................................. 103

vi

LIST OF TABLES (continued)

Number Page
17. Head Circumference Percentile Groups—~Psychologica1
Assessment Variables............................ ...... 104
18. Failure-to-thrive -vs.- non—Failure-to-thrive Groups--

Psychological Assessment Variables.................... 105

19. Summary Table of Growth Percentile Groups on

Psychological Assessment Variables........... ......... 106
20. Surgery -vs.- non-Surgery Groups-—Physical Measurement

Variables. ...... ............. ..... .................... 107
21. Surgery —vs.- non-Surgery Groups—-Psychological

Assessment Variables......................... ...... ... 108
22. Surgery Before 1 Year of Age -vs.- No Surgery Before

1 Year of Age-~Physica1 Measurement Variables......... 109

23. Surgery Before 1 Year of Age -vs.- No Surgery Before
1 Year of Age--Psychological Assessment Variables ..... 110

vii

LIST OF FIGURES

me Noml Heart... ....... ......OOOOOOOOOOOOOOO 0000000000

Mean growth percentile values presented graphically in
order of projected trends............... ..............

Mean values for cognitive psychological assessment
variables presented graphically in order of
projected trends................ ......... .. ...........

Mean values for psychomotor assessment variables
(BSIDPDI) presented graphically in order of
PrOjected trendSOO......OOOOOOOOOOOOOOOOOO ...... O .....

Growth percentile groups--graphical illustration of
mean scores on the Denver Developmental Screening

Test...‘.....‘.... ....... ...-......OOOOOOOOOOO ........

Growth percentile groups--graphica1 illustration of
mean scores on Bayley Scales of Infant Develop-
ment--Mental scaleoooooooooo0.00.00...one... oooooooooo

Growth percentile groups--graphical illustration of
mean scores on Bayley Scales of Infant Develop-

ment--Motor Scale ..................... . ...... . ........

Growth percentile groups--graphical illustration of
mean scores on the Stanford-Binet Intelligence Test...

viii

Page

41

45

47

51

51

52

52

CHAPTER ONE

THE PROBLEM

Introduction

 

Today, a child born with a heart defect, has a better chance than
ever to overcome the handicap and progress toward a normal adult life.
Surgical techniques that were impossible as recently as twenty years
ago are now employed routinely in medical centers and children's
hospitals throughout the world.

It is estimated that there are as many as 35 different kinds of
congenital heart defects, some 20 of which can be repaired or at least
partially corrected by surgery. Even so, congenital heart anomalies
remain a major cause of death in infancy.

Of all the infants born annually in this country, approximately
one percent have a congenital defect, either within the heart itself
or in one or more of the major blood vessels by which it is served.

In some instances a child may suffer from a combination of defects and
often survives only because one defect is compensating for another.

Heart defects are often found in infants born with other anomalies.
Rubella babies and babies born with Down's syndrome and Marfan's
syndrome frequently suffer from various forms of heart defect.

The German measles virus has long been known to be a cause of
cardiac abnormalities especially when the mother is infected during the
first two months of pregnancy. Other viruses probably also cause heart
defects, even when the infection is so mild the mother is not actually
aware of any illness. Other teratogenic agents such as radiation,

1

drugs or injury may also be causative but only during the first two
gestational months when the embryo's heart is being formed.

There is some evidence to suggest a family basis for heart defects.
Some family histories reveal a predisposition for cardiac ailments.
When a couple has a child with a heart defect they are usually advised
that they have about a two percent chance of having a heart ailment in
any other children they may produce. This is about double the risk for
the rest of the population. Parents with heart defects themselves
have a slightly higher chance--about three percent--of giving birth to
progeny that will also be affected.

Not only is it difficult to determine the cause of a heart ailment,
it is also usually hard to understand why a particular type or combin-
ation of defects develops. As has been seen, teratogenic agents can
affect the heart during the first two gestational months but the form
of the resulting defect varies considerably. Some affected embryos
never come to term. Others are able to survive on their mother's
life systems but die at or shortly after birth.

Etiologically then, heart disease still holds many mysteries, and
although great progress has been made in the development of techniques
to correct the defects, a great deal remains to be learned as well
about how these defects affect the individual. Are there critical
periods in an infant's development when he is greatly affected by the
presence of the ailment? In the past it was advisable to wait as long
as possible before surgically intervening in a heart case. Larger
hearts in bigger, stronger bodies promised greater chances of

successful repair than did the heart of a tiny infant. The advent of

3
profound hypothermia techniques1 in the last few years, has made inter-
vention possible at younger and younger ages. However, it is still un-
certain what the long term effects of profound hypothermia are in terms
of brain functioning and/or the performance of other bodily organs.

It has long been observed that children with heart disease tend to
express growth retardation to a much greater degree than unaffected
children. It is only recently that the reasons for the occurrance of
this growth failure are beginning to be understood. However, our

knowledge at this point remains far from conclusive.
Need

While a number of studies in the past have examined the problem of
pyhsical growth failure in children with cardiac disease, virtually no
attention has been paid to cognitive and motor development in these
children.

A study which would concern itself with these three parameters
simultaneously, as well as the interrelationships between them, could
go far to contribute to our knowledge of cardiac disease. It might
also provide helpful information to cardiologists and psychologists

alike in their work with these children.

 

lProfound hypothermia during surgery involves lowering the patient's
body temperature 15-20 degrees until organ functioning essentially
ceases. When this technique is employed in conjunction with a by-
pass machine that does the work of the patient's heart and lungs the
surgeon is able to work on a motionless heart in an essentially blood-
less field for as long as 60-70 minutes without serious physical
danger to the patient.

Purpgse

The purpose of this study was to assess the physical, cognitive
and psychomotor development of infants and children with congenital
heart defects in an attempt to determine whether children expressing
physical growth retardation also show concomitant retardation in cog-
nitive and psychomotor development. In addition, pertinent medical and
psycho-social data concerning these children and their families were
collected and examined for trends and similarities.

With this in mind, the study directed itself toward two goals:

1. To collect physical, social and psychological development
information regarding a number of children with heart defects. Survey
this data for any similarities or trends and if possible identify any
patterns that may become evident.

2. To formally assess the physical, cognitive and motor develop-
ment of each child and compare and contrast this information in lieu

of their respective defects and symptomatologies.

Hypotheses

 

Broadly stated, the hypotheses are as follows:

1. Children with cardiac defects tend to exhibit physical growth
retardation more frequently than do less-afflicted children.

2. Children with cardiac defects tend to exhibit lags in cognitive
development more frequently than do less-afflicted children.

3. Children with cardiac defects tend to exhibit lags in motor

development more frequently than do less-afflicted children.

5
4. Children with cardiac defects who express growth failure will
similarly tend to lag in cognitive and motor function develop-
ment.
5. Profound hypothermia techniques employed at the time of surgery

do not adversely affect the child.

Theory

Numerous studies support the hypothesis that undernutrition in
infancy may detrimentally effect brain growth and eventual intellectual
functioning. This is well documented with both animal and human sub-
jects.

Correa (1908), DeSilva (1964), and Stoch and Smythe (1968) found
that malnourished infants tend to be deficient in the areas of
exploratory behavior, curiosity and general activity level when com-
pared with typical healthy infants.

Brockman and Ricciuti (1971) found deficiencies in sensory dis-
crimination'in malnourished infants.

Cravioto and Robles (1965), Monckenberg (1968), Stoch and Smythe
(1968), and Chase and Martin (1970) all noted gross differences in
psychomotor performance between healthy and malnourished infants based
on performance as measured by standard infant scales.

Birch and Gustow (1970) found apathy to be a characteristic
behavioral feature of the clinical syndrome of malnutrition.

Winick (1970) found in both animals and humans, that when mal-
nutrition occurs during the period of cell division (i.e., before the
age of six months) the resultant brain has fewer cells than the

normal brain.

6

Lester (1975) found attentional defecits in malnourished infants
which the author considered likely to interfere with learning.

If this be the case for non-cardiac children affected by severe
malnutrition, we are left to wonder whether similar results hold for
children with growth failure secondary to cardiac defect. As will be
noted in the literature review chapter, some authors feel that strong
similarities exist between the physiologic states of severe mal-
nutrition and growth failure associated with cardiac disease.

There exists much variability among children with heart defects.
The severity of the physical condition, whether or not the child's
symptoms (i.e., cyanosis, congestive heart failure, etc.) are of an
acute or chronic nature, the effects of surgical intervention, the age
at time of such intervention and the techniques employed, all must be
considered in each case.

One might also wonder whether or not certain types of defects or
certain symptomatologies are more or less associated with detrimental
development. Are there other variables (i.e., prenatal, physical,
social-emotional, environmental, etc.) which correlate with such

development? Each of these issues are addressed in this study.

Overview

Chapter two considers the functioning of the normal heart and
examines the effects of various cardiac defects. Chapter three is
devoted to a review of the literature concerning growth failure and
cardiac anomalies. In chapter four the design of the study is
described including an examination of the sample population and an ex-
planation of the measures to be used. Chapters five and six provide

analysis of the results and a discussion and summary of the findings.

CHAPTER TWO

THE NORMAL HEART AND CONGENITAL HEART DEFECTS

The normal heart is a hollow organ composed chiefly of muscle.

Even in adulthood it weighs well under a pound and is about the size of
an individual's clenched fist. The heart wall itself is composed of
muscle called the myocardium. This is lined on the inside by a thin,
strong membrane called the endocardium; and is covered on the outside
by an outer sac called the pericardium.

Inside the heart there are four chambers. The septum divides the
heart vertically into left and right halves. Each half is further
divided forming an upper chamber, the atrium, and a lower chamber,
the ventricle. In each half of the heart the atrium serves as a fill-
ing or storage chamber and the ventricle as a pumping chamber. These
upper and lower chambers are separated by valves which are formed from
flaps which open in only one direction, allowing blood to drain down-
ward from the atrium to the ventricle.

After circulating through the body, blood returns to the heart, low
in oxygen and dark red in color. This blood enters the right atrium
and flows through the tricuspid valve into the right ventricle where it
is pumped through the pulmonary arteries to the lungs (see Figure 1).
In the lungs the carbon dioxide in the blood is exchanged for fresh
oxygen which returns the bright red color to the blood. It is then
returned to the heart through the pulmonary vein. This oxygenated

blood then re—enters the heart through the left atrium and flows

UU

****

   
 

left atrium pulmonary
vein

 
 
   
 

*******

******

  
 
 

  

left
ventricle

    
 

right ventricle

Figure 1: The normal heart: Arrows indicate blood flow, shaded areas
represent unoxygenated blood, clear areas represent oxygen-.
laden blood.

9
through the mitral valve into the left ventricle where it is pumped
back into the body through the aorta.2

The pressure with which the left side of the heart forces blood
into the aorta is much greater than the pressure with which the right
side pumps blood into the pulmonary artery. This gradient in pressure
makes an important difference in circulatory blood flow when defects
exist between chambers, or when valvular or arterial anomalies are
present.

For a child with a heart defect, the extent of his handicap and his
subsequent chances for repair are determined by the nature and severity
of the anomaly.

In many cases where defects are present the heart may work extra
hard to attempt to compensate for the error in development and may
become abnormally enlarged as a result. Such an enlarged heart will
usually fail before too long.

In some individuals heart defects are so small they go undetected
for years or even for an entire lifetime. In others, especially some
cases involving patent ductus arteriosus, the defect may correct it-
self in time.

For most cardiac cases however, surgery, if possible, remains as
the only option. It is estimated that about 90 percent of children

born with cardiac defects can be cured or at least helped by surgery.

 

2Information for this chapter was obtained from the following sources:

Apgar, J., & Beck, J. Is My Baby Alright? New York: Trident
Press, 1972.

 

Phibbs, B. The Human Heart: A Guide to Heart Disease. (3rd ed.)
St. Louis: C. V. Mosby Co., 1975.

 

10

Indications of cardiac malfunctioning may be evident at birth. A

low Apgar score3

may be diagnostic, especially if cyanosis is present
or if an abnormal heart beat or respiratory problems are evident.

Once a defect is suspected, time becomes an important ally. The
first month of life is often the most critical (the first few days for
some defects) as the baby completes his transition from relying on the
placental respiratory system to using his own.

In severe cases where cyanosis is present and respiratory distress
persists, it is usually necessary to perform a cardiac catheterization
as soon as possible. A cardiac catheterization can serve two functions.
Primarily it is a diagnostic tool. Dye is injected into a pre-
determined chamber and its progress through the heart and lungs is
monitored by consecutive x-rays which are taken and then viewed
sequentially. The catheter tube can also be used diagnostically to
collect blood samples or measure pressures in the various chambers.

Catheterization has another function especially in some cases in-
volving newborns. As was mentioned earlier some children survive only
because they have one defect compensating for another (i.e., trans-
position of great arteries). For the child without a complimentary
defect, modifications such as creating a hole between the artria, can

be performed, enabling the child to survive until complete surgical

repair can be attempted.

 

3The Apgar score, developed by Dr. Virginia Apgar, is a system used to
evaluate an infant's physical condition at one and five minutes after
birth. Heart rate, respiration, muscle tone, color and response to
stimuli are scored 0, l, or 2. The maximum score for a normal baby is
10. Infants with low scores usually require immediate attention.

11

Some risk is involved in cardiac catheterization, especially for
very young or very sick babies. Such a procedure is often necessary
however, to determine the exact nature of a defect and the subsequent
repair required.

When surgical intervention is deemed necessary it will either
involve the major vessels outside the heart, the heart itself, or both.
In the past the term "closed heart surgery" was used to refer to a
limited kind of surgery within the heart. In such surgeries the heart
was kept beating or stopped for only a few minutes while the surgeon
made a small opening and used either a gloved finger or a small instru-
ment to effect a repair in an area he could not actually see.

Surgical techniques have improved greatly, primarily as the result
of the advent of the "heart-lung machine." This device, sometimes
referred to as a bypass machine, intercepts the blood before it reaches
the heart, oxygenates it, and returns it to the body via the aorta. As
a result, "open-heart surgery" is possible and enables the surgeon to
completely open the heart allowing him to suture patches, ream out
stenotic vessels and in some cases even rebuild damaged chambers and
passageways. The heart-lung machine can function in place of the
patient's heart and lungs periodically for hours if necessary.

Heart defects can be generally divided into two major categories:
hypoxic or cyanosis inducing defects which result from right-to—left
shunting of the blood and non-hypoxic defects or those which involve
left—to—right shunts or communications between the chambers that do not
result in cyanosis. We will first consider some of those which involve

the latter type or left-to-right shunts.

a r.—

In

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in.

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12

Patent Ductus Arteriosus (PDA)

At birth every child has a ductus arteriosus which is an open pass—
ageway between the two major blood vessels, the pulmonary artery and
the aorta. In the post-natal infant or child, the pulmonary artery
carries blood from the right ventricle to the lungs where it is re-
oxygenated. The aorta sends this oxygen-laden blood from the left
ventricle out to the body.

In the normal infant the ductus closes within a few weeks of birth
and is usually closed within the first 10 to 15 hours. If this fails
to happen, as it does in about one in 2,000 (Apgar, 1972), some of the
blood that should go through the aorta to nourish the rest of the body
returns to the pulmonary artery and is sent back to the lungs. It is
in this way that a PDA causes a left-to-right communication between
these two vessels, blood leaving the left side of the heart is re-
turned to the right side without ever going out to nourish the body.

As a result, the heart works harder to pump sufficient blood to the
body. If the opening or ductus is very large the child's growth may
be slowed, probably due to lowered systemic (aortic) blood flow.

Patent ductus arteriosus is one of the most common of all cardiac
defects and was the first to be able to be corrected surgically. It is
110w considered one of the easiest surgical repairs and carries one of

t:he lowest operative risk factors. To correct this abnormal circu-
l1_ation pattern the surgeon does not have to open the heart. Instead,
:Ifle merely closes the ductus permanently by a tying off and cutting
lI;>rocedure. In most cases, where there are no other malformations, this

jLs enough to effect a cure in the patient.

13

Septal Defects: Atrial Septal Defect (ASD), Ventricular Septal

Defect (VSD)

 

Another common cardiac defect is caused by a hole in the septum or
wall of tissue which divides the heart into left and right sides. This
defect may be found in any portion of the wall between the two lower
chambers, the ventricles (ventricular septal defect), or between the
two upper chambers, the atria (atrial septal defect). Occasionally,
both upper and lower chambers may be involved.

The opening may be very small, cause no serious problems and
never need treatment. Or, it may be very large, problematic and even
fatal to the child if repair is not effected. In some rare cases a
whole section of the septum may be missing.

Any opening in the septum makes it possible for oxygenated blood to
flow from the left side of the heart where pressure is greater back to
the right side of the heart, mixing with the unoxygenated blood.

An artrial septal defect can be detected by a characteristic heart
murmer. It usually does not produce serious symptoms in a young child,
although in some cases it can result in growth retardation. There are
serious complications which can develop in later life however, and for
this reason, doctors advise that unless the hole is very small it
should be corrected surgically at a convenient time during childhood.

The repair procedure requires open-heart surgery employing the
heart-lung machine. The hole in the septum is sewn shut during the
procedure or, if it is very large, a teflon or dacron patch may be
sutured over the site. This is a permanent patch which gradually
becomes covered over by living tissue as the child grows. Following

the procedure, if the pressures in the various chambers remain constant

l4
and stable and if no other malformations are detected, repair is
considered to be complete.

A ventricular septal defect, between the lower chambers, is con-
sidered more serious. It too can be identified by a characteristic
heart murmer. Because the ventricles are the pumping chambers of the
heart, much more pressure is exerted on the blood passing through the
communication making it difficult even for a small hole to close on its
own. This does occur occasionally, however, by a process that is still
not completely understood. In fact about twenty percent of all VSD's
correct themselves in this fashion.

Some children with small defects may be essentially asymptomatic.
In others, the opening may be so large that it may cause congestive
heart failure, growth retardation, pulmonary complications and death.

Since higher pressure is exerted by the left ventricle during
heart muscle contraction the oxygenated blood gets shunted, via the
VSD, into the lung vessels at an increased pressure. This may
eventually cause thickening in the walls of the lungs. In addition,
since the heart is forced to work harder to get enough blood to the
body, the ventricle may eventually become enlarged.

As in atrial septal defects, children with ventricular septal
defects also tend to express growth failure. They are also inclined
to develop pulmonary hypertension and congestive heart failure.

In some cases a palliative procedure is required before complete
repair is attempted. In this procedure a band is put around the pul-
monary artery to make it smaller. The effect is that more resistance
is offered to pulmonary blood flow and the effect of the septal defect

is thus minimized.

In

C).

S

 

15

When a complete repair is performed the procedure is similar to
that for an ASD. The hole is either sutured closed or a patch is in-
serted.

We have so far considered the three major left-to-right shunting,
or acyanotic defects (PDA, VSD, ASD). Now, we will consider four
defects that result in cyanosis, or blue-coloring, in a child, due to
unoxygenated blood recirculating through the body or a minimal amount
of blood reaching the lungs to receive oxygen. These are: Transpo-
sition of the great arteries, pulmonary atresia, tricuspid atresia and

tetralogy of Fallot.

Transposition of the Great Arteries (TGA)

 

This is one of the most serious of cardiac anomalies as well as one
of the most difficult to treat. It is the most lethal of all during
the first two months of life, resulting in 18 to 20 percent of all
infant deaths from congenital heart disease. It affects many more
males than females.

In this malformation, as its name suggests, the pulmonary artery
and the aorta are transposed so that the right ventricle pumps carbon
dioxide laden blood into the aorta returning it to the body while the
left ventricle pumps oxygenated blood into the pulmonary artery,
returning it to the lungs.

As may be expected, a child born with this defect cannot survive at
all unless he has some other defect that allows left-to-right shunting
or mixing of the blood. In other words, the child must also have a
patent ductus, an atrial septal defect, or a ventricular septal defect,

or a combination of two or more of these additional anomalies to allow

:-

...—

.\‘

16
some oxygen-rich blood to escape from the left heart and lungs to the
right heart and transposed aorta.

Such a complementary defect however, does not fully correct the
problem. The length of time such a child can survive is dependent upon
how effectively the blood is mixing.

A child with a transposition is usually identified in the first few
days of life. He is almost always cyanotic. Respiratory problems are
also often observed. If a child with a transposition does not have a
septal defect to allow blood mixing, one is created for him by the
cardiologist at catheterization. This usually involves forming, or
enlarging a hole between the two atria.

Occasionally in cases of transposition, growth failure is observed
in the child. Because of recent advancements in hypothermic techniques,
complete surgical repair can now be attempted at a very early age and

is often performed during the first year of life.

Pulmonary Atresia (PA)

 

The pulmonary valve is one of the most common valves of the heart
to be affected by narrowing or stenosis. When this occurs the flow of
blood from the right ventricle to the lungs may be greatly inhibited.
As a result, the supply of oxygen to the rest of the body is reduced.
The heart pumps harder in an attempt to make up for the deficit,
resulting in an enlarged right ventricle, right atrium or both.

This right side enlargement along with increased right ventricular
pressure assists the cardiologist in diagnosing the defect. Cyanosis
is usually evident as well and the activity of a child with pulmonary

atresia may be greatly reduced and his growth rate may be delayed.

 

I

17
Other defects often co-exist with PA, most notably a hole in the septum
between the two ventricles.

The optimal time for surgery for a child with pulmonary atresia de-
pends upon the severity of the child's clinical course prior to surgery
and varies from individual to individual. During the repair the pul-
monary valve may be opened with special instruments. Or, if the valve

is severely damaged, it may be replaced with a synthetic valve.

Tricuspid Atresia (TA)

 

In this defect, the tricuspid valve between the right atrium and
ventricle has no opening or is absent. As a result, blood cannot pass
between the chambers. For the child to survive other defects must also
be present, usually in the form of an atrial septal defect and a ven-
tricular septal defect.

The normal pattern of blood circulation is considerably altered.
Since it has no passageway to the right ventricle, blood returning to
the right atrium from the body flows through the atrial septal defect
into the left atrium. Here it mixes with fresh blood returning from
the lungs and drains through the mitral valve into the left ventricle.
Next a portion of the mixed carbon dioxide and oxygenated blood is
pumped out to the body. The rest of it, flows through the ven-
tricular septal defect into the right ventricle. From here it is
finally pumped through the pulmonary artery to the lungs. Some
blood therefore, makes extra, unnecessary trips to the lungs while
some recirculates through the body without receiving fresh oxygen.

As a result, children afflicted with tricuspid atresia are cyanotic.

They, too, may be delayed in development.

18

Tetralogy of Fallot (TOF)

 

Tetralogy of Fallot gets its name from Dr. Etienne Fallot, a
French physician who, in 1888, wrote a book about four kinds of heart
defects which sometimes occur together in the same patient. Since that
time this particular group of defects has been known medically as
tetralogy (group of four) of Fallot.

A child with such a defect has the following four anomalies:

(a) a ventricular septal defect allowing communication between both
ventricles, (b) the aortic root is dextro-posed, or moved rightward,
allowing blood from each ventricle to flow out of the body; part of the
blood with fresh oxygen and part without, (c) pulmonary stenosis, or
narrowing of the pulmonary valve and sub-valve area, which limits the
amount of blood going to the lungs, (d) enlargement of the right ven-
tricle caused by exerted pumping required to force blood through the
narrowed pulmonary valve.

Children with tetralogy of Fallot are not only cyanotic but may
express growth retardation and "clubbing" at the ends of their fingers
and toes. An older child with a tetralogy may experience shortness of
breath after exercising and may squat or have fainting spells because
of insufficient oxygen reaching the body and brain.

Since total repair in infancy is difficult and dangerous,
palliative procedures may be employed to allow the child to grow before
more extensive surgery is attempted. There are two procedures which
may be used. In one the surgeon creates an artificial shunt by
fastening a smaller artery, which branches off from the aorta, to the

pulmonary artery. This allows more blood to reach the lungs.

a .

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19
In another procedure the aorta and pulmonary artery can be joined at
one small juncture, once again allowing for more pulmonary blood flow.

Complete repair of these four defects is a complicated and rather
long procedure. The septal defect must be closed or patched. The flow
must be properly directed. The pulmonary valve and artery must be re—
paired and stenotic tissue in the ventricles may need to be pains-
takingly removed.

It may have been noted in the seven defects reviewed above that
growth retardation or developmental dealy is often seen in children
with heart defects. In many cases however, normal development is ob-
served. Several studies conducted in the past 25 years have attempted
to understand the cause of such growth retardation as well as what
causes it to occur so irregularly both within a given defect and across
all defects. These studies are reviewed in the following chapter in an

attempt to determine what factors, if any, may be causitive.

 

-
.
.-

 

CHAPTER THREE

A REVIEW OF THE LITERATURE

Growth Failure and its Relation to Congenital Heart Disease

What is growth failure? Clinically it is defined as the patient
being at or below the third percentile (two standard deviations from
the norm) for height, weight, and head circumference.

In an article published in 1959, Mazur estimated that congenital
heart disease was the second most common cause of growth failure.

Most of the early studies, those published in the late 40's, the
50's, and early 60's considered growth failure in relation to the type
of cardiac defect, differentiating between patent ductus arteriosus
(an extracardiac lesion) and other defects which occur within the
heart. Porter (1947), Adams and Forsyth (1951), Engle, Holswade,
Goldberg and Glenn (1958), and Umansky and Hauck (1962) all considered
patients with PDA's with sample sizes ranging from 3 to 444. Their
findings were similar. Children with patent ductus arteriosus tended
to be smaller than the norm. Correction of the lesion only sometimes
contributed to an improved growth pattern and for the most part results
were likely to be better if surgical repair was completed at an early
age.

As to why growth failure occurred, the authors felt the results to
be inconclusive. It may have been caused by a number of factors in
addition to the cardiac defects. In some cases there were other con-
genital anomalies and it was felt that prematurity, low birth weight

and environmental influences may also have been contributory.

2O

21

Engle, et al. (1958) were concerned with the apparent persistance
of growth retardation after successful surgery. They were primarily
concerned with determining whether or not there is an optimal age for
surgical intervention. Or phrased another way, is there a "critical
period" for growth and development?

In all they reviewed 52 cases of PDA from records at the New York
Hospital and from the literature. From one-third to one-half of the
patients were undergrown physically with low weight being the most
evident problem. Age at time of surgery ranged from 3 to 14 years.
The results showed that the more undergrown a child before surgery,
the less he would improve afterwards. They concluded by recommending
early surgical intervention whenever growth retardation began to be-
come evident.

In an eight year period from 1959 to 1967 a number of articles
appeared dealing with intracardiac lesions and the subsequent occur-
rance of growth failure. Robinson and Bayer (1969) provide a review
of some of these articles, including, Mazur (1959), Mehrizi and
Drash (1962), Schlange (1962), Barbaccia, Macchi, and Corsini (1964)
and Linde, Dunn, Shiresen and Raffos (1967).

In summarizing the studies, Robinson and Bayer report that growth
retardaion, in general, seemed to vary according to the type of lesion
and its functional effects. Retardation was especially associated with
cases involving either chronic congestive heart failure or chronic
cyanosis. Weight retardation tended to be more common than height
retardation. Boys tended to be more physically retarded than girls

but cyanotic girls tended to be more delayed as they got older.

22
Some delay in secondary sexual development was also noted in
children with defects of all types and skeletal retardation was
associated with retardation in both weight and height but was not
parallel to it.

The studies also suggest some possible factors that may be the
cause of growth failure in cardiac children. The presence of either
cyanotic symptoms or chronic congestive failure seemed contributory.
Some non-cardiac but associated factors such as repeated infections,
and genetic or familial linkages may have played a part and the degree
of physical incapacity in the patient may also have contributed.

In children who have not had surgery they have found that by the
second year of life these children tend to be smaller than the norm and
their skeletal maturation is retarded. As they approach adolescence,
however, their dimensions and skeletal development move closer to the
normal means. At all ages they report that the ratio of sitting
height to stature is larger than chronological age standards.
indicating that the children are short primarily because they are
short-legged.

In studying children who have already had surgery Robinson and
Bayer found that growth patterns, especially weight patterns, tended
to improve slightly but that no obvious "catch-up" phenomenon could
be demonstrated.

The Robinson and Bayer study has many limitations. The authors do
not differentiate their subjects on any criteria. They are only
interested in comparing differences between pre— and post—surgical
measurements. No information is given as to the types of cardiac

ailments encountered, the severity of each case and the individual

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23
ages at the time of surgery. Also, did all of the subjects survive
surgery? If not, were the more severely undergrown ones the ones
who died?

Several studies in the literature report a correlation between
chronic congestive heart failure and growth retardation.

Adams, Lund and Disenhouse (1954) studied the growth data on 229
children with a variety of cardiac defects. They concluded that
children with congenital heart disease do not necessarily express ab-
normal growth either in terms of physique or in rate of growth. They
did observe however, that the presence of pulmonary congestion (con-
gestive heart failure) did seem to be related to growth failure. They
also suggest that growth failure in some children could be the result
of non-cardiac factors including emotional disturbances.

In a 1963 study, Krovets studied weight gain in children with PDA.
He reviewed 342 surgically corrected patients. Pre-operatively, 90 of
these had been below the third percentile for weight. Post-surgically,
the data on 72 of these patients revealed that 24 remained below the
third percentile as late as two or more years after surgery. The
author concluded that congestive heart failure pre-operatively and
the presence of additional non-cardiac anomalies were more common in
these children.

Ritter, Wallace and Weidman (1965), considered immediate and later
results of the complete repair of severe tetralogy of Fallot.
Approximately one-third of the 35 patients studied exhibited pre-
surgical growth retardation. Post-surgically only one child remained
below three percent and this child continued to be affected by chronic

congestive heart failure as long as 18 months after surgery.

 

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Lees, Bristow, Griswold and Olmstead (1965), studied relative
hypermetabolism in infants with congenital heart disease and under-
nutrition. Twenty-one patients with congestive heart failure, arterial
unsaturation (cyanosis) or both were compared to 21 normal controls
with respect to resting oxygen consumption. The cardiac patients
required significantly more oxygen with those expressing chronic heart
failure symptoms requiring the most of all.

In a 1969 study, Feldt, Strickler and Weidman also leave these
questions unanswered but they do provide some further important infor-
mation. The authors studied 463 patients with a variety of cardiac
defects, observing them both before and after surgery to assess their
growth patterns. At the outset they noted no significant differences
in birth weights between these patients and a group of normal children.
Pre-operatively however, lower than normal mean weights were noted in
the groups of patients with coarctation of the aorta, ventricular
septal defect, tetralogy of Fallot, atrioventricular canal and patent
ductus arteriosus. Patients with transposition of the great vessels
had the lowest pre-operative weights averaging 2.4 SD below the normal
mean. (The other groups ranged from 0.7 to 1.4 SD below the mean).

Pre-operative height was also measured. Groups of patients with
ventricular septal defect, tetralogy, atrial septal defect and atri-
oventricular canal all averaged 0.5 SD below the mean. Transposition
patients, though, averaged 1.5 SD below the mean.

Within each group the authors also identified those individual
patients expressing growth failure (2 SD below the mean). They found
32% of transpositions, 19% of PDA's, 14% of VSD's and 10% of ASD's and

atrioventricular canal patients fit the criteria. In addition, 8% of

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the tetralogy and coarctation patients and 4% of the aortic stenosis
and pulmonary stenosis patients also could be termed growth failure.

Post-operatively, improvements, though oftentimes very slight, were
noted in every group. The greatest gains were noted in patients with
ventricular septal defects, especially with cardiac failure in infancy,
those with coarctation of the aorta and those with patent ductus
arteriosus. The authors do not report age at the time of surgery but
state that for both height and weight gains, it did not seem to be an
influencing factor.

Perhaps the most interesting finding in the study had to do with
the incidence of congestive heart failure. The authors report that
growth failure occurred in children in all cardiac diagnoses studied
and generally correlated with the severity of the lesion. However,
the highest percentage of growth failure (33%) was found in children
with VSD who had a history of congestive heart failure in infancy.
Congestive heart failure in infancy was also common in children with
PDA and TGA and these patient groups also exhibited high incidences of
growth retardation.

They conclude from their data that congestive heart failure in
infancy ultimately effects the growth pattern of a child. They suggest
that it may have the same effect on subsequent development as does
primary malnutrition.

Krieger (1970) was interested in the significance of insufficient
intake in the growth failure of cardiac patients. He attempted to
evaluate this by measuring the response to forced feeding in patients
who, prior to it, had had adequate caloric intake on the basis of

normal requirements for age and weight but who did not grow.

 

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The anabolic response was excellent. On a comparable calorie intake,
nitrogen retention and weight gain were similar to those of patients
with growth failure in the absence of organic disease. Calorie re-
quirements per unit of body weight were increased because the basal
metabolic rate (BMR) was increased. This increase was not due to the
heart disease because control patients with similar degrees of growth
failure in the absnece of organic disease had a similar BMR.

In Krieger's opinion indications as to the cause of growth failure
in cardiac patients becomes somewhat clearer. The child with a heart
defect is given to frequent infections, pulmonary congestion and
episodes of minor illnesses that may be accompanied by anorexia.
During these periods, nitrogen retention decreases subsequently
raising BMR per unit of body weight. The result is that the child
requires a greater intake than would normally be expected.

A question arises: Why doesn't the child want to eat more?
Krieger states that the cause of poor voluntary intake is not known.
He says that it is unlikely that the physical condition is the cause,
since the patient tolerates the forced feedings without need for
additional digitalis (medication to prevent heart failure). He also
states that food intake may be insufficient because of psychological
factors that may be related to the presence of a chronic or life—
threatening disease. These factors perhaps pay a heavy toll on the
relationship between the cardiac baby and his family, resulting in
poor attachment formation and what could be termed a psychologically
"at risk" situation.

Naeye (1965a) has also been an important contributor to the re-

search on the occurrance of growth retardation in cardiac cases.

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He reports on a quantitative study of the organ and cellular develop-
ment in 12 infants with congenital heart defects and seven suffering
from alimentary malnutrition. His findings showed that most of the
organ abnormalities observed in the two groups were similar, suggesting
malnutrition as a common etiology. More specifically, he found that
structural abnormalities in the pituitary, pancreas, and other organs
suggested an anatomic basis for a variety of functional disturbances
which the patients displayed. He noted that reatrded brain development
appeared to be a serious consequence of such malnutrition. Unlike many
other researchers, Naeye found a correlation between growth failure
cardiac cases and subnormal weight and height at birth which he felt
suggested retarded prenatal growth as well.

Naeye (1965b) followed immediately with a more extensive report of
what he termed "dysmature" cardiac neonates. By carefully studying
and measuring the bodies and organs of those infants who had died he
determined that the problem was one of a subnormal number of cells in
the babies. He therefore concluded on the basis of this study of 136
babies with obvious severe cardiac anomalies, that an embryo with a
cardiac defect may show retarded growth in utero and that this may par—
tially explain the slow postnatal growth and mental retardation
occasionally associated with congenital cardiac anomalies.

In 1966 Naeye published the results of a study of 26 newborn
infants with complete transposition of the great arteries. He found
that their bodies and organs were enlarged due'to increased cytoplasmic
mass in the individual parenchymal cells. The same abnormality,
along with the pancreatic islet hyperplasia and fetal zone adrenal

enlargement, was found in infants with diabetic mothers. He suggests

 

 

 

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28
as a result of this that the link between the two groups of infants may
be hyperglycemia in the fetal pancreatic perfusate. In the diabetic
cases the hyperglycemia seemed to be a reflection of maternal hyper-
glycemia and in the cardiac cases it seemed to be the result of an
abnormal prenatal circulatory pattern.

A subnormal number of parenchymal cells was also found in most
organs of newborns with TGA. Naeye states that this is also common in
neonates with other cardiac malformations and may provide a partial
explanation for the slow postnatal growth in many such infants.

The results of Naeye's most extensive study appeared in 1967. In
this study he examined tissue abnormalities during postmortem examina-
tions of 220 individuals with congenital cardiac malformations. The
ages of the subjects ranged from birth to 44 years. They were compared
with 91 controls ranging in age from birth to 37 years. In each
patient, body weight, body length, and weights of organs were calcu-
lated in percent of mean values for control patients. Naeye specific-
ally looked Closely at the liver and adrenal cortex because previous
studies had shown that reduction of cytoplasmic mass in their
parenchymal cells is a sensitive index of undernutrition.

He found that infants with cardiac malformations were 92.4% as
heavy at birth as would be expected given their gestational ages.

This was only a marginal difference from the norm. As the infants
grew older though, organ and body measurements became progressively
more subnormal. For example, when hepatic cytoplasmic values were
computed for cardiac infants they were within the normal range during
the first few weeks of life, but for infants between 2 and 16 months
their cytoplasmic value was only 59% of the control mean (significant

at p = .001 level).

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Naeye also payed special attention to brain size because of pre-
vious suggestions that undernutrition in congenital heart disease may
lead to retardation in that organ during the early months. He reports
that in stillborn infants brain weights as a group did not vary sig-
nificantly from control values (97.5%, p = .3). At subsequent ages
though, the relative postmortem weight of the brain progressively
increased in infants with malformed hearts. As a group, infants aged
8 to 24 months had brain weights 87.1% of control values (p = .01).

In this age range the weight of individual brains showed a direct re-
lationship to the cytoplasmic mass in the hepatic cells. In contrast,
most children over 3 years of age with cardiac defects had brain
weights near control levels.

It is interesting to note that infants without cardiac defects
dying of marasmus due to alimentary malnutrition also had a subnormal
cytoplasmic mass in hepatic and adrenal cortex cells. As was noted in
the previous chapter, numerous studies from nutritional literature show
that in human beings and in animals alike, severe alimentary under—
nutrition during the first months of life may lead to permanent mental
and motor dysfunctioning. It is only logical to be concerned as to
whether or not the same is true of infants expressing growth failure
due to cardiac defects.

Although cardiac patients seem to "catch-up" to non-cardiac
patients by 3 years of age, at least on the indicies Naeye measured,
do they "catch-up" in other categories? Especially, one must wonder
about cognitive functioning and psychomotor development. Furthermore,

one must wonder about the statistics used to evidence this reported

 

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"catch-up" phenomenon. By 3 years of age some of the most severely
affected patients must have died. With them removed from the subject

pool the results are bound to improve.

Head Circumference Measurements as an Important Tool in the Assessment

of Growth Failure

 

In virtually all of the studies referred to thus far, failure in
physical development has, for the most part been determined by
measurements of height and weight. Certainly these are very important
criteria to be considered. However, since our purpose in this
research is also to consider the psychological development of the
child with congenital heart anomalies, we must also be concerned with
the value of using head circumference measurements in our assessment of
the child's development.

O'Connell, Feldt, and Stickler (1965), studied a group of 134
children with a head circumference more than 2 SD below the mean for
their ages. All but one were mentally subnormal as measured by the
Stanford-Binet test, the Infant Cattell Scale, and the Vineland Social
Maturity Scale. The most severe mental retardation was noted in the
group of children with a head circumference of minus 4 standard
deviations or below. The authors also found, as others have, that
mentally retarded children have heights and weights below the expected
norms but that the children they examined with head circumferences
below —2 SD had even lower mean heights and weights.

The authors also measured the head circumferences of 31 children
who were termed "growth failure" because of height and weight measure-

ments but who had normal intelligence scores. They found these

 

 

 

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31
children's head sizes to be within normal limits. They concluded that
in the child with growth failure, should the head be proportionately
small (below -2 SD), mental subnormality should be suspected.

In lieu of this a 1973 study by Clarkson should be viewed as one
of the most important regarding growth failure and cardiac defects.
The study takes on added significance because it is the only study in
the literature dealing with children with cardiac defects, all of whom
underwent surgical repair at less than 1 year of age. Average age at
time of surgery was 5% months. Each child suffered from a large left-
to-right shunt and each operation was performed because of life
threatening hemodynamic disturbance in the patient.

All of the subjects in the study were more than 2 SD below the
mean weight for age. All but one were more than 1 SD below the mean
height for age (6 5_-2 SD). On head circumference measurements, 2 were
at or below -4 SD from the norm; 7 others were at or below -2 SD from
the norm and only one child was not more than -1 SD. (He was below
normal, however.)

The results of the study showed that weight which was below
normal at the time of the operation came to lie within the normal
range in most patients post-operatively. Linear growth showed little
change. Head circumferences which were abnormally small at the time of
the operation came to lie within the normal range in those patients
whom these measurements were known to have been normal at an earlier
age. It should be noted though, that more than half of the children
remained in the range between -1 and -2 SD below the mean and only one

child ever reached the norm.

32
Summary

Although the literature concerning growth failure and its relation
to congenital heart disease is inconclusive, some trends become
evident:

1. Growth failure occurs in virtually every category of heart
disease.

2. In general, the more severe the case, the more likely it is
that growth failure will become evident.

3. Chronic congestive heart failure seems to be strongly
correlated with physical growth retardation.

4. In general, the earlier surgical intervention occurs, the

better are the chances that growth retardation can be ameliorated.

 

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CHAPTER FOUR

DESIGN OF THE STUDY

Sample

The population of this study consisted of fifty-eight children,
ages five months through eleven years (mean age = 43 months), who
were patients at the pediatric cardiology clinic at Ingham Medical
Center in Lansing, Michigan. All of the children were affected to some
extent by congenital heart disease.

Of the fifty-eight subjects thirty-two were males and twenty-six
were females.

The selection process of the children involved the compilation of
an exhaustive list of all clinic patients with appropriate symptoma-
tology. Each family was then sent a letter, explaining the nature
of the study and requesting their participation (see Appendix A).

This letter was followed, usually within a week by a telephone call to
each child's parents. Any questions they had were answered at this
time and if they agreed to participate, an appointment was scheduled.

In all, 76 letters were sent to prospective subjects. Six were
returned because of incorrect address. Follow-up efforts failed to
locate the families. Nine families refused to participate. Two
children, whose parents had consented to participate, died before
they could be assessed. One other child remained too ill to allow
adequate assessment. Fifty—eight subjects remained available for

the study.

33

 

 

 

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34

The subjects were divided into four groups based on their
cardiac symptomatology.

Group I children (14 subjects, mean age = 30 months) had defects
which resulted in left-to-right shunting of the blood within the
heart. This group included cases of patent ductus arteriosus (PDA),
atrial septal defects (ASD), and ventricular septal defects (VSD).
Symptomatically, these children suffered from chronic congestive
heart failure.

Group II children (13 subjects, mean age = 56 months) had defects
resulting in right—to-left shunts including transposition of the great
arteries (TGA), pulmonary atresia (PA) and tetralogy of Fallot (TOP).
In addition they had histories of cyanotic or hypoxic symptoms.

Group III children (17 subjects, mean age = 42 months) had either
left-to-right or right—to-left shunting defects but did not suffer
from chronic congestive heart failure or excessive cyanosis.

Group IV children (14 subjects, mean age = 45 months) had in-
significant heart disease. No surgical intervention had been per-
formed and in no case was it anticipated.

The last group served as a control group of sorts in as much as
each child had a heart ailment but the parents were aware that it was
insignificant and would probably never become problematic or require
surgery.

The process of determining the appropriate group placement for
some subjects was a complicated one. Group IV subjects were readily
identifiable as were some of the subjects in the other groups. A
number of the children however, had multiple symptomatology. For

others there was some question as to the chronicity of their symptoms.

 

 

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The ultimate decision on each subject was made by the pediatric cardi-

ologist who was directly responsible for their medical care.

Measures

Since the purpose of the study was to assess the physical, cog-
nitive and psychomotor development of the subjects, the study directed
itself toward two goals.

The first was to collect physical, social and psychological de-
velopment information regarding the children. Each subject and his or
her parents were seen either in their homes, or, in a few instances,
in the clinic offices. In each case the parents were interviewed
(see Appendix B) to gain information regarding the following:

1. Family information: Age, education and occupations of father
and mother; ages, sexes and education levels of all siblings or others
living in household.

2. Pregnancy period: Planned vs. unplanned; frequency of
obstetrical care; hours of labor; presentation of infant--head first,
feet first, breech or Caesarian; use of forceps; use of anesthesia.

3. Perinatal period: Gestational age as estimated by physician
at delivery; birth weight and length; description of any complications
during neonatal course; admission to neonatal intensive care unit or
transfer to another hospital; number of days in hospital before going
home.

4. Surgical (corrective or palliative) procedures: Catheteriza-
tions--number and age at each; surgeries——number and age at each.

5. Nursing information: Breast or bottle feeding; age at weaning.

 

36

Following the interview each subject was weighed and height and
head circumference measurements were taken (see Appendix C).

Next, a battery of psychological assessments were completed. For
subjects under 30 months of age Denver Developmental Screening Tests
and Bayley Scales of Infant Development--Mental Scale and Motor
Scale--were administered (see Appendix D).

Subjects between 30 months and 6 years were given Denver Develop-
mental Screening Tests (see Appendix E) and Stanford-Binet Intelligence
Tests (see Appendix F). Subjects over 6 years of age were given only
Stanford-Binets.

The mothers of all subjects were asked to complete modified
versions of the Neonatal Perception Inventory including "Average Baby,"

"Own Baby" and "Degree of Bother" rating scales (see Appendix G).

Statistical Analysis

 

After all the data were collected the following procedures were
performed, using the computer program, Statistical Package for the
Social Sciences.

At the outset a Pearson Correlation Coefficient Matrix was com-
pleted to allow for comparisons of each variable with each other
variable in an attempt to determine any apparent relationships
between variables.

Next, analysis of variance techniques were employed for the pur-
poses of making the following comparisons:

1. Each cardiac symptom group (I-IV), was compared with each
other group on all of the variables studied. Significant differences

between groups were noted.

 

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2. The subjects were then divided into new groupings based on the
physical growth measurements recorded at the time of assessment. This
resulted in three different weight groups, three height groups and
three head circumference groups: (a) those above the 16th percentile,
(b) those between the 16th and 3rd percentiles, and (c) those below the
3rd percentile. A group of children falling below the 3rd percentile
on all three measurements was also formed. These groups were then
compared with each other on psychological measurement variables.

3. The subjects were finally divided according to whether or not
surgical repair had been performed. The post-surgical group was com-
pared with the pre-surgical group and then those children having had
surgery under hypothermic conditions were compared with the others.

The .05 level of significance was chosen to determine acceptance
or rejection of each hypothesis. Results within the .10 level of
significance however, were reported as approaching significance.

The next chapter will present the results of these analyses.

 

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CHAPTER FIVE

RESULTS

In examining the results of this study each hypothesis is con-
sidered individually. In addition, an analysis of related data, as

obtained through the Pearson Correlation Matrix is presented.

Hypothesis Analysis

 

The task in this section is to determine whether the hypotheses
considered in this research should be accepted or rejected. This is
not a straightforward process. The ultimate decision on each hypoth—
esis is affected by numerous variables, and it was important to con—
sider not only any differences between groups but also any trends or
relationships between the groups that may be evident.

With regards to medical symptoms, there were definite differences
between the four groups of subjects. This, of course, was arranged by
design. Because of this it was possible to form a priori expectations
as to the relationships between the groups. As each hypothesis was
considered these were examined to see if the expectations were well
founded.

Hypothesis I: Children with serious cardiac defects

tend to exhibit physical growth retardation more
frequently than do less-afflicted children.

 

In considering this hypothesis it was first necessary to rank
order the four groups according to severity of illness. Subjects in

Groups I and II were considered to be the most at risk. Group I

38

 

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39
children had histories of chronic congestive heart failure. Group II
children chronically expressed cyanotic symptoms.

Group III children were considered at greater risk than the in-
significantly affected subjects in Group IV but it was not possible to
determine where they would fall in relation to the other groups. It
seemed reasonable to expect them to perform less well than the children
in Group IV, but how much so, was the question.

In effect then, hypotheses were formed about each hypothesis.

For Hypothesis I they were:

1. Groups I, II and III will all rank below Group IV: the
experimental groups should all express more physical delay than the
control group.

2. Groups I and II will rank below Groups III and IV: the two
most severely affected groups would express the most severe physical
delay.

3. Group I will rank below Group II: the expectation was that the
congestive heart failure group (I) should rank below the cyanotic
group (II).

If all of the assumptions should prove correct, the final rank
ordering of the groups would be: I, II, III, IV. If Hypothesis I
were to be true, these trends should appear.

To assess the extent of growth retardation, the following variables
were considered for each group: (a) weight percentile values,

(b) height percentile values, and (c) head circumference percentile
values. The results are presented in Table 1.

The data indicate significant differences between the groups

(p = .05) on the variables "weight percentile" and "head circumference

percentile” but not "height percentile."

40

Table 1

Physical Measurement Summary Table**

 

 

 

Group _Weight % _Height % Head circ. %

X S.D. X S.D. X S.D.
I 16.43 15.47 34.21 29.07 35.07 27.91
II 38.77 27.25 38.92 27.19 29.31 26.02
III 41.00 25.03 38.35 30.33 51.94 27.62
IV 53.50 21.96 53.07 27.51 59.36 20.99
Totals 37.59 22.29 41.03 27.91 44.59 25.19
F ratio 6.38* 1.16 4.12*
df 3/54 3/54 3/54

 

* indicates significance at .05 level.
** complete results can be found in Appendix H, Table 13.

 

 

For the purpose of examining the trends, the results of the "physi-
cal measurement" variables are presented graphically in Figure 2.

The results of the variable "weight percentile" completely
supported the projected trend: I, II, III, IV. In addition, the
differences between the groups were statistically significant
(p = .05).

The results on the variable "height percentile" partially
supported the projected trend. Group I ranks below the other three,
but the differences between Groups II and III were essentially non-
existant. As was expected, the control group subjects (Group IV)

ranked well above those in the other three groups.

 

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Figure 2: Mean growth percentile values presented graphically in order
of projected trends (I, II, III, IV).

 

 

On the variable "head circumference percentile," the trend was
once again partially supported. All three experimental groups ranked
below the control and the two most severely affected groups ranked
lowest of all. Group I however, ranked above Group II.

The results of this study did not completely support the projected
trends. One reason for this may have been discrepancy between the
mean ages of the groups, especially between Groups I and II (2:11 and

5:01, respectively).

42

It is reasonable to expect weight discrepancies to be most
apparent in younger children and head circumference discrepancies to
be most apparent in older children. Neonatal information collected on
all of the groups (see Appendix H, Table 11) revealed no significant
differences between any of the groups on the variables "birth weight"
or "birth length." Therefore, it can be concluded that the subjects
were born with essentially similar physical or biological character-
istics.

A normal, healthy infant would quickly begin to gain weight. Con-
versely, a child at risk, such as a child with a heart ailment with
symptoms apparent in the newborn period, may instead, lose weight or
at least not gain significantly for an extended period of time. This
might continue until medication or surgical intervention could be
used to help bring the symptoms under control. As these children get
older, these weight delays may disappear or at least become less sig-
nificant.

Unlike weight, head size is not immediately affected by early and
severe symptomatology, at least not to the same extent. An infant's
head will not perceptibly decrease in size. It may, however, not
grow at the expected rate and many months or even years of deprivation
might occur before a child's head size is significantly smaller than
his peers.

The conclusion one might draw from this then, is that, were the
children in Group I older, their head sizes might be comparitively
smaller, more closely resembling the children in Group II.

On the basis of this data, Hypothesis I cannot be accepted.

Some significant differences were observed, and for the most part,

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43
the expected trend was in evidence, but further study in this area is
warranted. A study of more children, of similar ages, followed over a
longer time period would perhaps provide more conclusive results.
Hypothesis II: Children with serious cardiac defects
tend to exhibit lags in cognitive development more
frequently than do less-afflicted children.

As with the first hypothesis, the same trends were expected to
appear with regard to Hypothesis II. Once again, it was anticipated
that the experimental groups (I, II, III) would all rank lower than
the control group. Groups I and II were expected to rank lower than
Groups III and IV and Group I was expected to rank lowest of all,
resulting in an overall expected order of I, II, III, IV. If Hypoth-
esis II were to be acceptable, these trends should appear.

In considering Hypothesis II, the following variables were used:
the "Denver Developmental Screening Test" (DDST); the "Bayley Scales
of Infant Development--Mental Development Index" (BSIDMDI); and the
"Stanford-Binet Intelligence Quotient" (SBIQ).

The actual results are summarized in Table 2. There were no
significant differences between the groups on any of the variables.

Figure 3 provides a graphical illustration of the results. From
it the presence or absence of the anticipated trends can be observed.

On the variable "Denver Developmental Screening Test" an ascending
linear relationship between the groups was evident. This result
supports the anticipated trend.

While the relationship between the groups on the "Bayley Mental
Scale" was somewhat less linear, the expected trend was nevertheless,
observed. Only minimal differences were found between Groups II and

III but Group II ranked lower.

44
TafleZ

Psychological Assessment Summary Table*

 

 

 

Group ._ DDST** _BSIDMDI __ SBIQ
. X S.D. X S.D. X S.D.
I 2.36 0.74 94.00 15.59 88.57 17.41
II 2.43 0.53 99.83 10.50 93.86 4.78
III 2.44 0.81 100.20 27.15 91.00 13.40
IV 2.83 0.39 108.33 21.36 97.36 11.91
Totals 2.51 0.65 99.19 17.13 92.97 12.19
F ratio 1.25 0.43 0.82
df 3/45 3/17 3/33

 

* complete results can be found in Appendix H, Table 14.
** for purposes of computation Denver scores were given numerical val-
ues as follows: Normal = 3, Questionable = 2, Abnormal = l.

 

 

Finally, when the groups were compared on the basis of the "Stan—
ford—Binet" scores, the trend was only partially supported. Group I
ranked lowest and Group IV ranked highest, but Group III ranked below
Group II.

Once again, the differences in age may partly explain this differ-
ence. To a certain extent the findings suggested that the detrimental
effects of cardiac illness on ultimate psychological development
disipate with age, allowing for a sort of "catch—up" phenomenon.

The trend analysis of these variables lends little support however,
to Hypothesis II. The absence of significant differences between the
groups requires that Hypothesis II be rejected on the basis of these

data.

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45

 

 

 

110 X
BSIDMDI : x _
SBIQ 3 0 --‘-~--
105
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I II III IV
GROUPS
3

DDST SCORES

DDST: X 1

 

I II III IV
GROUPS

Figure 3: Mean values for cognitive psychological assessment variables
presented graphically in order of projected trends (I, II,
III, IV).

 

 

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46
In future research in this area, it may be more productive to
employ an item analysis of the items included in each of the scales.
It may then be possible to determine whether particular areas such
as language development, fine motor development, eye-hand coordination,
etc., are more affected than other areas. When the scales are viewed
in their entirety it is difficult to make any specific interpretations.
An item analysis may allow for this.
Hypothesis III: Children with serious cardiac defects

tend to exhibit lags in motor development more fre-
quently than do less-afflicted children.

 

Only one variable was available for use in considering Hypothesis
III and that is the "Bayley Scales of Infant Development--Psychomotor
Development Index" (BSIDPDI). To a certain extent, this was a
hinderance because only data on subjects younger than 30 months of age
could be included since children older than 30 months were, instead,
assessed using the Stanford-Binet.

As with the first two hypotheses, the same trends and the same
ultimate rank ordering (I, II, III, IV) were anticipated. The actual
results are reported in Table 3.

A significant difference between the groups did not occur. A
graphical illustration of the results (see Figure 4) indicate that the
anticipated trend was only partly in evidence.

Groups I and II ranked far below the other two groups but subjects
in Group III appeared to be completely unaffected by the limitations of
their medical conditions. This data should be considered very weak,
however, since the number of subjects included from each group was
very small (Group I = 7, Group II = 6, Group III = 5, and

Group IV = 3), especially Group IV.

47
Table 3

Psychomotor Assessment Summary Table**

 

 

Grp. I II III IV Totals
Mean Me an Me an Mean
Var. S.D. S.D. S.D. S.D.
BSIDPDI 83.00 85.67 105.40 98.00 91.24
16.97 18.91 23.19 10.00 17.13

1.74 F ratio
3/17 df

 

 

** complete results can be found in Appendix H, Table 14.

 

 

 

 

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Figure 4: Mean values for psychomotor assessment variable (BSIDPDI)
presented graphically in order of projected trends (I, II,
III, IV).

 

 

 

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Once again the results were very inconclusive. One observation
does seem rather clear though, and that is that severely affected in-
fants, expressing chronic symptoms, are severely limited in their
psychomotor development. This is not surprising given their physical
conditions.

Based on these data, Hypothesis III must be rejected. The data
suggested that severely afflicted children are delayed in their psycho-
motor development. However, there was a wide range of variation among
children who were less ill. As in the previous instances, further re-
search seems warranted.

Hypothesis IV: Children with cardiac defects who do

express growth failure will similarly tend to lag in
cognitive and motor function development.

 

A consideration of this hypothesis required a regrouping of the
subjects along new independend variables; namely, growth measurement
variables. To accomplish this, each subject was categorized according
to his percentile score into a weight, height and head circumference
percentile group. In addition a "failure-to-thrive" group was also
formed to examine the effects of multiple physical retardation. This

reorganization resulted in the following groups:

W—I - all subjects above the 16th percentile for weight.

W-II - all subjects at or below the 16th percentile and
above the 3rd percentile for weight.

W—III — all subjects at or below the 3rd percentile for
weight.

H-I - all subjects above the 16th percentile for height.

H-II — all subjects at or below the 16th percentile and
above the 3rd percentile for height.

H-III — all subjects at or below the 3rd percentile for

height.

49

HC-I - all subjects above the 16th percentile for head
circumference.

HC-II - all subjects at or below the 16th percentile and
above the 3rd percentile for head circumference.

HC-III - all subjects at or below the 3rd percentile for
head circumference.

F—I - all subjects above the 16th percentile for height,
weight and head circumference.

F-III - all subjects at or below the 3rd percentile for

height, weight and head circumference.
(No F-II group was formed because no children fell between
the 16th and 3rd percentiles on all three variables. See
Appendix I for complete tables and group N's.)

The 16th percentile represented one standard deviation from the
mean. The 3rd percentile represented two standard deviations from the
mean.

As with the previous hypotheses, trends were anticipated. It was
expected that the highest percentile group in each category would rank
well above the two lower percentile groups. Subsequently, it was
anticipated that the mid-range group would perform better than the
lowest group in each category.

In considering this hypothesis, mean scores on the following
variables were used: DDST, BSIDMDI, BSIDPDI, SBIQ. A summary of sig—
nificant correlations is provided in Table 4, and graphical illus-
tration of the results are presented in Figures 5-8.

With regard to the weight percentile variable, the trend on the
Denver was in evidence and a linear relationship was observed. In
addition, the differences between the scores were significant
(F — 3.62, p = .05).

With regard to height percentile values, although the relationship
on the Denver was curvilinear, the trend was in evidence. Once again

the differences were significant (F = 6.01, p = .01).

 

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Table 4

Significant Correlations Between Physical and
Psychological Measurements

 

 

Variables r N p
weight percentile x DDST 0.3535 49 0.013
Weight percentile X BSIDMDI 0.4632 21 0.034
Weight percentile X BSIDPDI 0.6922 21 0.001
Height percentile X DDST 0.3400 49 0.017
Height percentile X BSIDMDI 0.4914 21 0.024
Height percentile x BSIDPDI 0.6817 21 0.001
Height percentile X SBIQ 0.3906 37 0.017
Head circumference

percentile X BSIDMDI 0.4887 21 0.025
Head circumference

percentile X BSIDPDI 0.6506 21 0.001

 

 

When head circumference percentile values were considered on the
Denver, though, the trend was not supported. Only minimal differences
were observed between any of the groups.

Finally, when the two "failure-to-thrive" groups were contrasted,
although the differences were short of significant, the anticipated
directional relationship was observed.

On the Bayley Mental Scale variable, the weight percentile rela—
tionship presented as curvilinear, with only minimal differences be-
tween Groups I and II. The anticipated trend was observed, however.

With regard to height percentile values on this variable, though,
the trend was only partially in evidence. The number of subjects in
the two "delayed" groups was small. Both ranked well below the
"normal‘group but the mid-range group also ranked below the lowest
percentile group. The differences between the groups were significant

(F = 3.18, p = .10).

 

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51

 

 

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head circumference: 0 .... . ....
failure: @ d...“
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I II III
GROUPS

 

Figure 5: Growth percentile groups--graphical illustration of mean
scores on the Denver Developmental Screening Test.

 

 

 

 

 

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‘ weight: X —.
@‘ 0‘ height: # on...
105 0 ‘ '\ head circumference: O ...-o—
. failure: @ O'N"
100
95
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I II III
GROUPS

 

Figure 6: Growth percentile groups--graphical illustration of mean
scores on Bayley Scales of Infant Development——Mental Scale.

 

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100

95

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70

65

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52

weight:
height:
head circumference:
failure:

# O...-
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II III
GROUPS

Figure 7: Growth percentile groups--graphica1 illustration of mean
scores on Bayley Scales of Infant Development-—Motor Scale.

 

 

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GROUPS

 

Figure 8: Growth percentile groups—-graphical illustration of mean
scores on the Stanford-Binet Intelligence Test.

 

 

53
When head circumference percentile groups were considered on this
variable, the trend was again observed and the relationship became more
linear. Group differences were not significant, however.

Finally, when the "failure" groups were contrasted on this variable
the trend was again in evidence but the group differences were minimal.
Psychomotor development, as measured by the Bayley Motor Scale,

was perhaps the variable which was most severely affected by growth
retardation in every category. There were marked and significant dif-

ferences in every instance: Weight % - F = 9.32, p = .01; Height % -

F 10.08, p .01; Head circ. % - F = 4.34, p = .05; Failure group % -

F 11.59, p .01.

The anticipated trend was observed and the relationships were
linear in every instance except "height percentile" where it was curvi-
linear.

The effects of growth failure on Stanford-Binet IQ scores was less
conclusive than with the previously mentioned psychological measures.
The expected trend was observed with regard to both weight and height
percentile values and the differences with these were significant for
height and approached significance for weight. (Height: F = 4.99,

p = .05; Weight: F = 2.93, p = .10).

However, only minimal differences between groups were observed with
regard to both head circumference percentile and multiple growth fail-
ure percentile values.

With regard to the correlation analysis, the only measurement
variable that correlated strongly with the Stanford-Binet was height

percentile. The data in Table 4 suggest that growth retardation

affects development in a younger child more extensively than in an

54
older child. This may be indicative of a "catch-up" phenomenom, where,
even though growth retardation may persist, it does not continue to
detrimentally affect a child's development.

In terms of weight and height retardation then, the effects on
psychological development are severe and in evidence. Both mental and
motor development showed retardation in the most delayed group.

In the mid-range group, the results were less similar. Younger
children were more affected by height retardation in both the mid-range
and the lowest percentile groups as evidenced by performance on both of
the Bayley scales. Weight retardation in infancy though, was less
detrimental unless it was very severe and then motor function was more
severely affected than cognitive development.

In older children, severe weight and height retardation both had
detrimental effects on psychological functioning, as evidenced by
scores on the Stanford-Binet. Scores obtained by the mid-range group
though, were essentially the same as those obtained by the normal
growth groups.

As far as small head size was concerned, if a child fell below his
peers as an infant it appears to have had a negative effect on his
psychological development, especially if the lag was severe. For
older children with small head circumferences, though, there were
almost no differences between their scores on both the Denver and the
Stanford—Binet and the scores of their normal peers.

To summarize, it must be said that the results of this analysis
were inconclusive. Many significant differences were found and the
anticipated trends were much in evidence. The small number of subjects

available through this study make it hazardous to either accept or

55
reject the hypothesis. The findings of this research lean toward sup-
porting the hypothesis but, as with the previous hypotheses, further
research is called for.
Hypothesis V: Profound hypothermia techniques employed
at the time of surgery do not adversely affect the child.

In considering this hypothesis, the results from the "surgery —vs.-
non-surgery" and "surgery before one year of age -vs.— no surgery
before one year of age" groupings (see Appendicies J and K) were used
to make the necessary comparisons. The data indicated no significant
or even near-significant differences between any of the groups. This
was the case when considered on both physical and psychological vari-
ables.

Based on this study, there is no reason to reject the hypothesis.
It must be remembered though, that the sample size in this comparison
is small, only 11 children were operated on using hypothermic tech-
niques. While it is encouraging that they exhibited no differences
from their peers, it would seem advisable to continue to follow these
children as well as to assess many more who may undergo similar sur—
geries in an effort to provide more support to the belief that there

are no detrimental effects from this surgical practice.

Analysis of Related Data

 

As was stated in Chapter 4, a Pearson Correlation Coefficient
Matrix was computed correlating all of the variables with all of the
other variables. In all, 44 variables were included, resulting in

1,892 correlations being computed.

 

 

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Whenever this kind of a procedure is used the probability of com-
mitting a type I error is increased simply because when the number of
correlations is increased, the number of them that will appear signifi-
cant simply because of chance also increases. This, then, is a disad-
vantage to using this technique.

On the other hand, computing a correlation matrix also affords some
advantages. Some variables may, in fact, correlate strongly with one
another but because such a correlation was not anticipated or looked
for in the design, the relationship between the variables may be over-
looked. When a matrix is computed however, such relationships are
revealed. Space does not allow for the printing of the entire matrix,
nor is it necessary to do so. It is also not necessary to report all
of the significant correlations that appeared simply because many vari-
ables correlate with each other for obvious reasons. For example, it
is logical to expect "birth weight" to correlate strongly with "birth
length." Similarly one would expect "mother's age" to correlate
strongly with "father's age." In both cases they did.

In this section only those correlations which were significant and
which represent relationships between variables that were not
necessarily anticipated will be reported.

An interesting correlation occured between the weight and head
circumference percentile variables and the expectation of future
catheterization and surgery. These relationships are reported in
Table 5.

These data seem to suggest that growth retardation persists in pre-
surgical or uncorrected cases. Conversely, they seem to suggest that

post-surgical children achieve normal growth patterns.

 

 

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57
Table 5

Significant Correlations Between Growth Retardation and
Future Catheterization and Surgeryi

 

 

Variables r N p
Weight percentile X future cath. -0.2703 58 0.040
Weight percentile x future surg. -O.2976 58 0.023

Head circumference

percentile X future cath. —0.2884 58 0.028
Head circumference
percentile X future surg. -0.3619 58 0.005

 

 

In the next table (Table 6) some of the neonatal period variables
are correlated with future performance on psychological tests. Birth
weight is correlated with both scales from the Bayley. Whether or not
a child required admission to an intensive care unit (NICU) at birth
is correlated with his ultimate performance on the Denver, the Bayley
Motor Scale and the Stanford-Binet. Tbtal number of days in the hospi—
tal before going home after birth is correlated with both the Denver
and the Stanford—Binet. Finally, whether or not the child had to be
transported to a different hospital during the newborn period is
correlated with his ultimate performance on the Denver, the Bayley
Motor Scale and the Stanford-Binet.

The data suggest that larger newborns ultimately perform better on
the Bayley Infant Scales. Conversely, babies in trouble at birth, who
require special care, remain in the hospital longer or need to be
transported to another hospital (and are therefore separated from their
mothers), do poorly when subsequently assessed with the Denver, the
Stanford-Binet or the Bayley Motor Scale. It is interesting that these
experiences do not seem to affect performance on the Bayley Mental

Scale.

Table 6

Significant Correlations Between Neonatal Variables and

Subsequent Performance on Psychological Tests

 

 

Variables r N p
Birth weight BSIDMDI 0.5987 21 0.004
Birth weight BSIDPDI 0.6200 21 0.003
NICU DDST -0.4984 49 0.001
NICU BSIDPDI -0.5891 21 0.005
NICU SBIQ -0.4305 37 0.008
Days in hospital DDST -0.3556 49 0.012
Days in hospital SBIQ -0.5238 37 0.001
Transport DDST -0.3753 49 0.008
Transport BSIDPDI -0.6280 21 0.002
Transport SBIQ -0.3927 37 0.016

 

 

In another comparison, breast-fed babies differed significantly
from bottle fed babies in some surprising ways (see Table 7).
Table 7

Breast-feeding as a Function of Brithweight and its
Effects on Future Performance on Psychological Tests

 

 

 

Variables r N p
Breast-fed X Birthweight 0.2813 58 0.032
Breast—fed X DDST 0.3257 49 0.022
Breast-fed X BSIDPDI 0.5137 21 0.017

 

 

The breast-fed babies performed better on both the Denver and the
Bayley Motor Scale. The data also seem to suggest that babies who are
larger at birth are more likely to be breast—fed. This finding may be
a function of the fact that many babies who are small at birth require

longer hospitalizations and may even be admitted to intensive care

59
units or special care nurseries. These occurrances result in more
extensive separations from their mothers during the first several days
and as a result of these separations, bottle feeding may be employed to
make the situations easier.

In another relationship, the responses of mothers to the "Own Baby"
rating scale in the Neonatal Perception Inventory (see Appendix G) cor-
related strongly with a number of variables (see Table 8).

Table 8
Significant Relationships Between Mother's Responses to the

"Own Baby" Rating Scale and Her Child's Surgical History,
Her Husband's Education and Her Own Employment

 

 

Variables r N p
NPI-OWN X Catheterization 0.2827 55 0.037
NPI-OWN X Surgery 0.3457 55 0.010
NPI-OWN X Tbtal surgeries

to date 0.3394 33 0.011
NPI-OWN X Father's education -0.2949 54 0.030
NPI-OWN X Mother's employ-

ment -0.3352 55 0.012

 

 

Table 8 indicates that mothers whose children had had catheteri-
zations or surgeries saw those children as being more difficult to care
for. Conversely, those women who were employed or whose husbands had
good educations, did not see their children as being difficult to care
for.

Finally, the data provided some interesting information about
planned —vs.- unplanned pregnancies (see Table 9).

The educational levels of the parents and the occupations of the

fathers correlated directly with planned pregnancies.

60
Table 9

Significant Correlations Between Planned Pregnancies and
Parent's Educational Level and Father's Occupation

 

 

 

Variables r N P
Planned pregnancy x Mother's educ. 0.3494 57 0.008
Planned pregnancy X Father's educ. 0.2572 54 0.060

Planned pregnancy X Father's occ. 0.3407 55 0.011

 

 

 

rd

#1»

‘-

w.

CHAPTER SIX

DISCUSSION

In this chapter the results of this research are summarized and.
discussed, the limitations encountered are noted, and recommendations

for future research are given.

Summary of Results

 

This study was undertaken with two goals in mind: (a) to collect
background and developmental information about the children, and (b)
to formally assess them along physical, cognitive and motor development
indicies. An overriding question to be answered was whether or not
children expressing certain symptoms were more inclined to develop-
mental delays than less symptomatic children.

Although this trend was observed the results of this study were
not significant. The evidence did not support a contention that
children who chronically suffer congestive heart failure or who are
chronically cyanotic are at greater risk, developmentally, than their
less-afflicted peers.

The first three hypotheses all addressed this issue. Hypothesis I
was concerned with the physical development of chronically ill cardiac
children. Although children suffering chronic congestive heart failure
did tend to be underweight, the pattern did not hold for height or
head circumference.

Hypothesis II considered the cognitive development of the children.
There were no significant differences between any of the groups.

()1

62

Hypothesis III was concerned with the psychomotor development of
the subjects. In this instance, significant results once again were
not observed but the suspected trend was in evidence.

Although the results of this study do not support the theory of
developmental delay secondary to medical severity, they do suggest
that, regardless of actual symptomatology, a child who does exhibit
lags in physical development is a much greater risk for also experi-
encing delays in cognitive and psychomotor functioning as well.

This was supported by the results concerning Hypothesis IV. The
children were grouped according to growth percentile measurements.
Regardless of medical sypmtoms, if a child were undergrown, he was
grouped with peers expressing similar growth patterns. When physical
size was correlated with cognitive and psychomotor development the
relationship was positive and significant. Physical delay correlated
strongly with psychological delay and, conversely, physical maturity
correlated strongly with psychological maturity.

Hypothesis V considered the effects of profound hypothermic sur-
gical procedures on the physical and psychological development of
children who had undergone such techniques. The data of this study
revealed no differences between these children and children operated

on without the use of hypothermia.

Limitations of Study

 

The major problem which has affected this study since its inception
has been that of attaining an adequate and representative sample of

cardiac children.

63

The ages of the children in this study covered a wide range (five
months to eleven years). When a child has a heart defect, both the
cardiologist and the thoracic surgeon, in considering the best methods
of treatment, are always competing against time. Some of the most
carefully planned surgical procedures are never performed because, for
the patient, time unexpectedly runs out. In the past decade and
especially in the past 4-5 years, the sophistication of surgical pro-
cedures has greatly increased. Intervention is now possible at earlier
and earlier ages. However, the unexpected still occurs.

Because of this natural attrition, any researcher studying children
with heart defects must be cognizant of the effect this factor will
have on the sample. Children at the older end of the spectrum are the
ones who have survived. If they or their peers had been studied when
they were infants and toddlers, their numbers would have been greater
and the results probably would have been different. Included in such a
sample would have been the very ill children who have not survived.
And, because of the severity of their defects, they probably would have
been more likely to express both physical and psychological delays.

Many studies mentioned in Chapter 3 report improvements in subjects
with age. These same studies though, do not provide information about
subjects who may have died between assessment periods. It would not be
unreasonable to assume that these were many of the subjects who per-
formed most poorly or who were physically, most retarded.

After subjects were assigned to their respective groups in this
study the same kind of problem existed. Large age differences existed

between the groups, especially between Groups I and II.

e.

 

.flu

 

q
u...

u...

«C

.3
. o.

64

Additionally, since the potential subject pool was so small
(letters were sent to the parents of every child who qualified), it was
not possible to randomly select some subjects and not others; nor was
it possible to match the subjects from one group to another.

Another problem that was never able to be solved was that of de-
termining the severity of illness of each of the subjects, even within
each group. Compared to another group of children with histories of
chronic congestive heart failure it is hard to say how Group I in this
study would match up. Because these children had not been assessed in
this way since birth, it was not possible to know about the quanti-
tative and qualitative aspects of their episodes of congestive failure.
WOuld they be similar or different to another sample drawn from another
clinic? This same question must be asked for the other three groups as
well.

Another problem encountered in this study was the method in which
data was collected. At the outset, the decision was made to visit the
children and their parents in their homes. This made it more conveni-
ent for many of the families, especially those who lived great dis-
tances from the Lansing area. In fact, many parents agreed to partici-
pate only after they were told that a home visit would be made. The
problem however, was that this made it more difficult to accurately
assess the children, especially on physical measures. Instead of the
very sophisticated scale in the clinic, a bathroom scale had to be used
and, although the same scale was used for each child, it was not pos-
sible to be completely accurate. Similarly it was difficult to
accurately procure height and head circumference measurements. In

clinic, a child can be laid on a paper covered table and lines can be

65
drawn at his head and his feet. When he is removed it is a simple
matter to measure the distance between the marks. In a kitchen or a
living room though, even with mother's assistance it is difficult to
convince a reluctant child to stand up straight or to hold still while
his head circumference is measured.

Additional problems existed with some of the psychological in-
struments that were used. Because of the small number of subjects
available and the resulting wide age range, it was necessary to use
different tests depending upon the child's age. Correlations between
the scales (Denver, Bayley and Stanford-Binet) are too weak to permit
them to be combined for purposes of comparisons. The result was that
each group, already small, had to be sub-divided depending upon the
tests used for each child. If larger groups had been available, and if
the ages of the children within each group had been similar, one test
could have been given to all and an item analysis could have been com-
pleted allowing for more sophisticated comparisons than were possible

with only scaled scores avaiable.

Recommendations for Future Research

 

Although this research did not result in many significant findings,
and although, for the most part, the hypotheses were unsupported, to a
large extent the expected trends were in evidence, enough so that
future research seems warranted.

A study could be designed to follow patients from many clinics
over a period of several years. A subject could enter the study at
birth or as soon as a defect was diagnosed. His progress could be

closely measured; growth curves could be plotted and episodes of

66
failure or cyanosis could be noted. Such an approach would permit the
cardiologists involved to more specifically group the subjects accord-
ing to the severity of their illness.

Different time periods that may be critical for development could
also be studied using this approach. Is it more detrimental for a
child to be in failure during the first few months of life or is it
more problematic if it occurs during the latter half of the first year?

A long term study would also allow for the effects of surgery at
different ages to be studied.

While it would seem advisable to collect the physical and psycho-
logical assessment data in the setting of the clinic, it would never-
theless be beneficial to visit the child at his home periodically.
These visits could be conducted by a social worker or a public health
nurse and would permit an assessment of environmental factors which may
effect the child's development. The parents of each subject could be
interviewed and information about the pregnancy and neonatal periods
could be obtained.

Finally, it should be emphasized that the true value of any re-
search study lies in the ultimate beneficial effects it might have on
future treatment or intervention. Should a research project, such as
the one being proposed here, be conducted, it would be important to
provide remedial supports and special services to any of the children
and families for whom it might be warrented. Special programs to
provide physical and psychological stimulation to delayed children
could be developed. Supportive, therapeutic programs for parents and
families could also be offered, especially to help them better under-
stand their child's defect and to help them prepare their child for

catheterization and/or surgery, as the need arises.

BIBLIOGRAPHY

 

BIBLIOGRAPHY

Adams, F. H., & Forsyth, W. B. The effect of surgery on the growth of
patients with patent ductus arteriosus. Journal of Pediatrics,
1951, 32, 330—336.

 

Adams, F. H., Lund, G. W., & Disenhouse, R. B. Observations on the
physique and growth of children with congenital heart disease.
Journal of Pediatrics, 1954, 42, 674-680.

 

Apgar, V., & Beck, J. Manifestations and results of treatment of
patent ductus arteriosus in infancy and childhood. Pediatrics,
1955, 16, 695.

 

Barbaccia, F., Macchi, L., & Corsini, E. Observations on skeletal
maturation in congenital cardiopathies. Minerva Pediatrica,
l964,_l§, 1025-1027. As cited in Robinson and Bayer (1969).

 

Bayley, N. The California First-Year Mental Scale. Berkley: Univer—
sity of California Press, 1933. As cited in Bayley (1969a).

 

. The California Infant Scale of Mental Development.
Berkley: University of California Press, 1936. As cited in
Bayley (1969a).

 

. Manual for the Bayley Scales of Infant Development. New
York: The Psychological Corporation, 1969a.

 

Birch, H. G. & Gustow, J. D. Disadvantaged Children: Health, nutri-
tion and school failure. New York: Harcourt, Brace, &
World, 1970.

 

 

Brockman, L. M., & Riccuti, H. N. Severe protein-calorie mal-
nutrition and early childhood. Develgpmental PsychongX, 1971,
4, 312-319.

Broussard, E. R., & Hartner, M. S. Maternal perception of the neonate
as related to development. Child Psychiatry and Human Develop-

 

 

ment, 1970, l,

. Further considerations regarding
maternal perception of the first born. In J. Hellmuth, (Ed.)
Exceptional Infant: Studies in abnormality, vol. 2. New York:
Brunner/Maxel, Inc., 1971.

 

Chase, H. P., & Martin, H. P. Undernutrition and child development.
New England Journal of Medicine, 1970, 282, 933-939.

 

Clarkson, P. M. Growth following corrective cardiac operation in
early infancy. In B. G. Barrett-Boyes, M. M. Neutz, & E. A.
Harris (Eds.), Heart disease in infancy. London, England:
Churchill Livingstone, 1973.

67

 

68

Correa, P.G. iQue es la Culebrilla? Revista Medicina de Yucatan,
1908, 6, 3-5. As cited in Lester (1975).

 

Cravioto, J. , & Robles, B. Evolution of adaptive and motor behavior
during rehabilitation from Kwashiorkor. American Journal of
Orthopsychiatry, 1965, 35, 449-464.

 

 

Desilva, C. C. Common nutrition disorders of children in the tropics.
Advances Pediatrica, 1964, 13, 213-264. As cited in Lester
(1975).

 

Engle, M. E., Holswade, G. R., Goldberg, H. P., & Glenn, F. Present
problems pertaining to patency of the ductus arteriosus: I.
Persistance of growth retardation after successful surgery.
Pediatrics, 1958, 21, 70-80.

 

Feldt, R. N., Stickler, G. B., & Weidman, W. H. Growth of children
with congenital heart disease. American Journal of Diseases
of Children, 1969, 117, 573-579.

 

 

Frankenburg, W.K., Camp, B. W., & Van Natta, P. A. Validity of the
Denver Developmental Screening Test. Child Development, 1971,
42, 475.

 

Frankenburg, W. K., & Dodds, J. B. The Denver Developmental Screening
Test. Journal of Pediatrics, 1967, 21, 181.

 

Frankenburg, W. K., Dodds, J. B., & Fandall, A. W. The revised Denver
Developmental Screening Test manual. Denver, Colo.: Univer-
sity of Colorado Press, 1970.

 

 

Frankenburg, W. K., Goldstein, A. D., & Camp, B. W. The revised Denver
Developmental Screening Test: Its accuracy as a screening
instrument. Journal of Pediatrics, 1971, 12, 988-995.

 

Jaffa, A. S. The California Preschool Mental Scale. Berkley: Univer-
sity of California Press, 1934. As cited in Bayley (1969a).

 

Kreiger, I. Growth failure and congenital heart disease. American
Journal of Diseases of Children, 1970, 120, 497-502

 

Krovetz, L. J. Weight gain in children with patent ductus arteriosus.
Diseases of the Chest, 1963, 44, 274-283.

 

Lees, M. H., Bristow, J. D., Griswold, H. E., & Olmstead, R. W. Hyper—
metabolism in heart disease and undernutrition. Pediatrics,
1965, 36, 183.

Lester, B. M. Cardiac habituation of the orienting response to an
auditory signal in infants of varying nutritional status.
Developmental Psychology. Vol. 2, No. 4, 1975, 11, 432-442.

 

69

Linde, L. M., Dunn, O. J., Schiresen, R., & Rasof, B. Growth in
children With congenital heart disease. Part I. 'Journal of

 

Mazur, J. H. Growth failure associated with congenital heart disease.
Clinical Proceedings of Children's Hospital, 1959, 16, 87-92.
As cited in Robinson and Bayer (1969).

Mehrizi, A. E., & Drash, A. Growth disturbance in congenital heart
disease. Journal of Pediatrics, 1962, 6;, 418-429.

 

Monckenberg, F. Effect of early marasmic malnutrition on subsequent
physical and psychological development. In N. S. Scrimshaw, &
E. Gordon (eds.), Malnutrition, learning and behavior.
Cambridge, Mass.: MIT Press, 1968.

Naeye, R. L. Unsuspected organ abnormalities associated with con-
genital heart disease. American Journal of Pathology, 1965a,
47, 905.

. Organ and cellular development in congenital heart
disease and in alimentary malnutrition. Journal of Pediatrics,
1965b, 61, 447.

 

. Transposition of the great arteries and prenatal growth.
fiArchives of pathology, 1966, pg, 412-418.

 

. Anatomic features of growth failure in congenital heart
disease. Pediatrics, 1967, 62, 433-440.

 

 

O'Connell, E. J., Feldt, R. H., & Stickler, G. B. Head circumference,
mental retardation, and growth failure. Pediatrics, 1965, 66,
62-66.

Phibbs, B. The Human Heart: A guide to heart disease. (3rd ed).
St. Louis: C. J. Mosby Co., 1975.

Porter, W. B. The effect of patent ductus arteriosus on body growth.
American Journal of Medical Science, 1947, 213, 178.

Ritter, D. G., Wallace, R. B., & Weidman, W. H. Immediate and late
results of complete repair of severe tetralogy of Fallot.
Heart Bulletin, 1965, 16, 92-94.

 

Robinson, S. J., & Bayer, L. M. Growth history of children with con-
genital heart defects. I. Effect of operative intervention.
Child Development, 1969, 36, 315-346.

 

Schlange, H. Physical and mental development in children with con-
genital heart disease and vascular abnormalities. Archiv ffir
Kinderheilkunde, 1962, 31, 1-61. As cited in Robinson and
Bayer (1969).

 

7O

Stoch, M. E., & Smythe, P. M. Undernutrition during infancy and sub-
sequent brain growth and intellectual development. In N. S.
Scrimshaw, & E. Gordon (Eds.), Malnutrition, learning and
behavior. Cambridge, Mass.: MIT Press, 1968.

Terman, L. M., & Merrill, M. A. Stanford-Binet Intelligence Scale:
Manual for the third revision form L - M. Boston, Mass.:
Houghton Mifflin, Company, 1960.

Umansky, R., & Hauck, A. J. Factors in the growth of children with
patent ductus arteriosus. Pediatrics, 1962, 66, 540.

 

Winick, M. Nutrition, growth and mental development: Biological
correlations. American Journal of Diseases of Children, 1970,
120, 416-418.

APPENDICES

 

APPENDIX A

LETTER OF EXPLANATION

AND ACKNOWLEDGEMENT OF PARTICIPATION FORMS

71

Dear

we are writing to request your assistance in a project we are undertaking to
help us learn more about the way in which children with heart defects grow
and develop. It is our hope that this knowledge will better enable us to
care for your child and for the other children we see at the clinic, both
now and in the future.

As you may or may not know, some children with heart problems grow more slow—
ly, physically, than do children who are not affected. Sometimes, even
children with similar defects grow at very different rates.

While we know this about physical growth, we do not know very much about the
psychological development of children with heart disease.

As you know from watching your own children, the preschool years are filled
with learning as a child encounters his environment. Each new touch, taste
and smell is another source of learning. As a child's muscles grow and.de-
velop he acquires greater motor abilities that enable him to sit, crawl,
walk ari run with progressive ease. All of this prepares him for his entry
into the childhood years.

Just as physical development varies from child to child, so too, does the
rate of cognitive and motor development. The more we can learn about a
child's development, the better equipped we are to assist that child's par—
ents in providing him with experiences and even exercises that can help him
develop optimally. We want to learn as much as we can about your child and
children like him so that we can better assist all parents of children with
heart defects as they help their children grow.

To do this, a research project has been planned. In the course of this pro-
ject we hope to interview you and many other parents. During this interview

we will be asking you questions about your family, your child, and about his
development.

72

In all, we will need about 2'!- - 3 hours of your's and your child's time.
There will, of course, be no charge for your participation.

After we have completed our assessment of your child we will be happy to
answer any questions you may have. With your permission, the results of
your child's assessment will become a part of his clinic record so that we
may continue to refer to it as we provide you with care.

While we do hope to publish the results of our study, complete confidential-
ity and anonimity will be rigidly maintained. If names are used in the re-
port, they will be fictitious names. F‘urthermore, any information about a
child or his family will be presented in such a way that it will not be
possible for anyone other than perhaps the professional clinic staff, to
identify them.

'de hope to be able to complete this project by the end of September. When-
ever possible we will conbine your child's assessment with a visit to the
clinic. Or, if it is more convenient, and with your permission, Mr. Tom
Taflan-Barrett, a doctoral candidate in psychology at Michigan State Univ-
ersity, will come to your home for an appointment and gather the necessary
data. In this way we hope to be able to see all of the children by the end
of the summer.

If you are interested and willing to participate, please sign the attached
permission form and return it to us in the stamped envelope that is provided.
Since you may have questions you would like answered before agreeing to par-
ticipate, Mr. Barrett will be calling you within a few days of your receiving
this letter. At that time he will answer your questions, and if you wish to
participate, schedule an appointment with you.

Thank you very much for your time and consideration.

    

 
 

/,
fl
. la. ’l/L‘l! 1.!le

. ~ . ’lan-Barrett, M. A.

73

Cardiac Developmental Assessment Project

Acknowledgement of Participation

I have read the attached explanatory letter requesting my participation
and the participation of my child in the developmental research project being
conducted under the auspices of Dr. A. H. Sparrow and the cardiac clinic at
Ingham Medical Center.

The study has been explained to me and I understand the explanation
that has been given and what my participation and my child's will involve.

I understand that I as free to discontinue my participation in the study
at any time without penalty.

I understand that the results of the study will be treated in strict
confidence and that I will remain anonymous. within these restrictions,
results of the study will be made available to me at my request.

I understand that my participation in the study does not guarantee any
beneficial results to me.

I understand that, at my request, I can receive additional explanation
of the study after my participation is completed.

It is with this knowledge and these assurances that we agree to parti-
cipate.

 

 

 

 

father's signature date
mother's signature date
witness signature date

 

 

(please ask a neighbor or someone other than a member of your immediate family
to witness your signature).

child's name
child's birthdate

 

 

APPENDIX B

DATA COLLECTION FORM

74

Cardiac Developmental Assessment Project

Information Form

 

 

 

 

 

 

 

 

Code No. Ht. %
Group Sex Ht. %
h.c. 95
N.P.I.: DDST:
Degree of Bother: BSID: MDI
' ' PDI
S-Ba IQ

 

I. Family - Basic-economic factors -

 

 

 

 

 

 

Father age Mother' age

education dducaticn

occupation occupation

Sibblings and others in household

age sex ,4 education ‘ occupation at home

 

 

 

 

 

 

II. Dragnancy -

1). planned vs. unplanned

2). did mother receive obstetrical care?

3). at what point during pregnancy did care begin?
h). estimated number of obstetrical visits?

5). frequency of visits? '

 

 

 

 

 

III. Labor and Delivery -
1). length of labor? .
2). type of delivery: head, feet, breech, Caesarian?

3). were forceps used?

 

 

 

h). was mother anesthesized?
kind? dosage?

 

 

 

75

IV. Neonatal Period -
1). gestational age as estimated by physician at delivery?
2). birth weight?
3). length at birth?
1+). Apgar scores: one minute?
five minutes?

so. was oxygen required at time of delivery or during

stay in hospital and to what extent?

 

 

 

 

 

 

6). were other supportive procedures required and to what-
extent? ‘

 

 

 

7). m the baby admitted to the NICU?
8). length of hospital stay before going home?
9). was baby transported to another hospital?

 

 

 

I. Neo - parent Information -
1). how frequently did parents visit-child: frequently,
often, seldom, rarely? _ parents -
hospital record -
2). are there any nursing notes or social service

 

 

bsemtions which are pertinent or speak to the
duration or quality of parental interaction with baby?

 

 

 

VI. Surgical (corrective and/or palliative) procedures -
1) Date Procedure Mothennia Time in hosp.

 

 

 

 

 

 

2). are future procedures planned and for when?

 

 

 

APPENDIX C

GROWTH CHARTS

76

GROWTH CHART
BOYS 0-6 YEARS

42 4. 54 I)

 

BIRTH DATE

 

land as set- In an inter

4
0 l 1 VIARS 3 Q 5 ¢

77

GROWTH CHART
GIRLS 0-6

new: 3 4 .

HEIGHT

.0

Ct”?! ° 3.
mass

" HEAD CIRCUMFERENCE

O 3 O 0 I2 IS I. 2| 24 DOWN“)! 42 Q0 34
4

YEARS 3

 

BIRTH DATE

 

Done on «to m an new.
fibula Manes by H C SMfl el al
wanes end Lovey. p. 60-63
Nelsen, a. 3‘67

354)

APPENDIX D

BAYLEY SCALES OF INFANT DEVELOPMENT

78

Bayley Scales of Infant Development

The Bayley Scales of Infant Development represent the most recent
and reliable efforts of psychological examiners to develop an instru-
ment to assess cognitive and motor functioning in babies aged 2 through
30 months.

Both the Mental Scale and the Motor Scale draw heavily upon three
California scales: the California First-Year Mental Scale (Bayley,
1933), the California Preschool Mental Scale (Jaffa, 1934), and the
California Infant Scale of Motor Development (Bayley, 1936). The
content of these three scales was closely studied and many deletions,
changes and additions in item content were made (Bayley, 1969).

The 1969 edition of the test consists of 163 items on the Mental
Scale and 81 items on the Motor Scale. It has been standardized on a
sample of 1,262 children, distributed in approximately equal numbers
among fourteen age groups ranging from 2 through 30 months in selected
strata of the United States population, as described in the 1960 United
States Census of Population. The sample was controlled for sex and
race within each age group, with further controls related to residence
(urban-rural) and to education of the head of the household (Bayley,
1969).

No significant differences were found on either the Mental or Motor
Scale by sex, birth order, geographical location, or parents' educa-
tion. Separating the results by ethnic group (white, Negro, and Puerto
Rican), the only significant difference was a consistant tendency for
Negro children to obtain slightly superior scores on the Motor Scale at

all ages from 3 through 14 months (Bayley, 1969).

79

The Bayley Scales of Infant Development are designed to provide a
basis for the evaluation of a child's developmental status in the first
two and one-half years of life. The Mental Scale is designed to assess
sensory-perceptual acuities, and the abilities to discriminate stimuli
and respond appropriately. It also attempts to assess the development
of "object constancy," memory, learning and problem-solving ability in
the infant and toddler. Some items assess vocalization and the begin-
nings of verbal communication while still other items deal with the
child's ability to generalize and categorize.

The purpose of the Motor Scale is to provide a measure of the
degree of control a child has over his body. Coordination of the large
muscles and the finer manipulatory skills of the hands and the fingers
are assessed.

Motor abilities are important in the development of the child's
orientation toward his family and environment. They influence the
quality of his interactions. As the infant gains mobility he becomes
open to new and more varied experiences. He becomes able to make
active choices and express himself in new and varied ways.

The Mental and Motor Scales correlate well with each other,
usually of the order of .50 to .60, even during the first 12 months
of life.

Split-half reliability coefficients for the Mental Scale range from
.81 to .93, with a median value of .88. Since the Motor Scale has
about half as many items as the Mental Scale, reliability coefficients
for the Motor Scale tend to be somewhat lower, ranging from .68 to .92,

with a median value of .84 (Bayley, 1969).

80

Using another statistic, that of standard error of measurement, the
Mental Scale ranges from 4.2 to 6.9 standard score points, while the
Motor Scale ranges from 4.6 to 9.0 (Bayley, 1969). This serves to em-
phasize that a test score is not a precise point on a scale, but rather
an estimate of a "true" score.

When the Mental Scale score (MDI) is compared with the Motor Scale
score (PDI), a difference of more than 17 to 20 points is considered to
be significant at the .05 level (Bayley, 1969).

It should be emphasized that the Bayley Scales are not predictive
for future intelligence as measured by such classic instruments as the
Stanford-Binet. Rather, the scales provide information regarding the
infant's developing facilities; his awareness of his environment and
his ability to respond to and interact with it.

Marked discrepencies from the norm emphasize several potential pro-
blems however, and provide clues as to areas where remedial efforts
might well be applied.

On both the MDI and the P01 a score of 100 is considered average.
The more broadly defined "average" range is considered to be from about
87 to 113. Infants scoring above 113 are considered to be accelerated.
Those with scores between 70 and 87 are considered borderline and
suggest cause for concern and further assessment and follow-up.
Children scoring below 70 and children with wide discrepancies between
MDI and PDI scores (20 points or more) should be considered at risk
developmentally. These children warrant close follow-up and whenever
possible special programs should be planned for them to help stimulate
them and enrich their environmental experiences. Neurological impair-

ment is often evident in such children.

81

Premature children represent exceptions to the above rules. It is
not uncommon for these children to perform more in accordance with
their gestational ages than with their chronological ages. However, a
"catch—up" phenomenon is usually observed and can be expected to be

completed by 15 to 18 months of age.

APPENDIX E

DENVER DEVELOPMENTAL SCREENING TEST

82

The Denver Developmental Screening Test

The Denver Developmental Screening Test (DDST) is a short, easily
administered measure of physical, motor, perceptual and cognitive de-
velopment in pre—school aged children (Frankenburg and Dodds, 1967).

It was devised to provide a simpler method of screening for evidence
of delayed development in infants, toddlers and pre-schoolers.

The test, made up of 105 items, covers four functions: gross
motor, language, fine motor-—adaptive, and personal--social. It has
been standardized on 1,036 presumably normal children (2 weeks to 6
years of age) whose families fitted the occupational and ethnic
characteristics of the population of Denver, Colorado (Frankenburg and
Dodds, 1967).

One general finding has been that, after two years of age, children
of "white collar" workers tended to do better on verbal items than did
children of "blue collar" workers.

Three studies have been conducted by Frankenburg and his associates
(Frankenburg, Camp, Van Natta, 1971; Frankenburg & Dodds, 1967; Frank-
enburg, Goldstein, & Camp, 1971) in an attempt to assess the validity
and reliability of the DDST. On the basis of the first two studies,
the interpretation of the test scores was revised. The third study was
then undertaken to cross—validate the revised method of interpretation.
Non—professional health screening aides tested 2,000 Children; the
results of 237 were validated by testing with the Revised Bayley Infant
Scale or the Stanford—Binet Intelligence Scale. Analysis of these data
revealed that with the use of a revised method of interpretation, over-

referrals wwrn decreamwd from 21 percent to 11 percent and

83
underreferrals increased slightly from two to three percent. A total
of 186 children varying in age between 1.5 and 76 months were tested
with the DDST on two occasions 7 days apart; use of the revised
method of interpretation yielded 97 percent agreement. The health
aides were then retrained in the administration and interpretation of
the DDST; cross validation of the revised method of interpretation with
another sample of 246 children indicated only 3.2 percent overreferrals
and 0.4 percent underreferrals (Frankenburg, Goldstein, & Camp, 1971).

In interpreting the results of the Denver, a test result is con-
sidered to be "abnormal" if two sectors (of the four: personal—-
social, fine motor——adaptive, language, and gross motor) each have two
or more item delays or if one sector has two or more delays and one
other sector has one delay and in the same sector the age line does not
go through an item that is passed.

A test result is considered to be "questionable" if there are two
or more delays in one sector or if one or more sectors have one delay
and in the same sector the age line does not go through an item which
is passed.

The test is interpreted as being "normal" if the performance is not
"questionable" or "abnormal," (Frankenburg, Dodds, & Fandal, 1970).

Scores on the DDST correlate approximately with scores on both the
Bayley and the Stanford—Binet, especially for children achieving
"normal" or "abnormal" scores. Children falling in the "questionable"
range however, should be rescreened since Frankenburg, et al., 1971,
found that up to two—thirds of these children had DQ or IQ scores

above 80 .

84

Since the Denver Developmental Screening Test was developed as a
shorthand screening instrument to be used primarily by medical pro-
fessionals, it seems advisable to use it in a study where children with
heart defects are being assessed. Such professionals may want to com-

pare their findings with heart patients with the results of this study.

APPENDIX F

STANFORD-BINET INTELLIGENCE SCALE

85

The Stanford-Binet Intelligence Scale

The Stanford-Binet Intelligence Scale is a thoroughly standardized
and reliable test of intellectual achievement. It has been known and
widely used for several decades, having been most recently revised in
the 1950's, resulting in the 1950 form of the scale (Terman and Mer-
rill, 1960).

The rationale underlying the Stanford-Binet and other IQ tests is
that they consist of specific samples of highly structured problem-
solving behavior. The assumption is that these samples are so similar
to problem-solving tasks in other structured situations that one can
directly extrapolate to and predict the behavior of the child in these
situations; those where he is faced with structured problem-solVing
tasks.

The 1960 revision retains the main characteristics of the scales
from the previous tests. It is an age scale making use of age stan-
dards of performance. It attempts to measure intelligence regarded as
general mental adaptability. The 1960 scale incorporates into a single
form the best subtests of the 1937 scales. The selection of the actual
subtests was based on records of tests administered over a five-year
period (1950-1954) to 4498 subjects ranging in age from 2% to 18 years.

In scoring the Stanford—Binet, the child's "mental age" (MA) is

compared with his chronological age (CA) to result in his intelligence

quotient or IQ. An IQ of 100 is considered average. The overall
average range extends from 90 to 109. The "low average" range extends
from 80 to 80. Children scoring between 70 and 79 are classified as

”borderline" defective." Scores below 70 are considered to be

86

representative of mental defectiveness or retardation. Roughly 3 per-
cent of the general population falls in this category (Terman & Mer—

rill, 1960).

APPENDIX G

NEONATAL PERCEPTION INVENTORY

87

The Neonatal Perception Inventory

The Neonatal Perception Inventory (NPI) was devised by Broussard
and Hartner for their work with mothers of newborn infants. They were
concerned with trying to predict how a primiparous mother might respond
to her baby based on the extent to which her baby was perceived by her
to be similar to or different from her conception of the average.

In their research, 120 full-term, normal, first born infants were
categorized at one month of age into a high-risk or low-risk group for
possible development of emotional and developmental deviations. The
predictions were based on measurements of the mother's perception of
her infant as compared to the average. At age 4% the children were
evaluated by two child psychiatrists who had no knowledge of the chil-
dren's predictive risk rating. A statistically significant association
was evident between prediction and outcome, (Broussard & Hartner, 1970).

The inventories that were used asked the mothers to rate, first the
average baby and then their baby, on such variables as crying, feeding
problems, spitting up or vomiting, sleeping difficulties, bowel move—
ment problems, and predictability of eating and sleeping patterns.

A "Degree of Bother Inventory" was also developed by Broussard and
Hartner (1971). This form asks mothers to describe how much they were
bothered by their baby's behaviors in regard to the same, above
mentioned variables.

While Broussard and Hartner used their instrument only with primi—
parous mothers and only during the neonatal period, the plan in this
study is to ask mothers of cardiac children to retrospectively rate
both their child's behaviors and how bothered they were by them, re-

gardless of the Child's"; present. age.

88

Our purpose is to attempt to see if a mother's responses vary
depending upon the nature and severity of her child's defect. The
forms used (essentially the same as those used by Broussard and
Hartner) are on the following three pages.

Average Baby and Your Baby Scales—-Method of Scoring

 

The Average Baby form elicits the mother's concept of the average
baby's behavior. The Your Baby form elicits her rating of her own
child. Each of these instruments consists of six single item scales.
Values of 1-5 are assigned to each of these scales for each of the in-
ventories. The blank signified "none" is valued as l and "a great
deal" has a value of 5. The lower values on the scale represent the
more desirable behavior.

The six scales are totaled with no attempt at weighting the scales
for each of the inventories separately. Thus, a total score is ob-
tained for the Average Baby and a total score is obtained for the Your
Baby.

The total score of the Your Baby form is then subtracted from the
Average Baby form. The discrepancy constitutes the Neonatal Perception
Inventory score. (Broussard & Hartner, 1971).

Degree of Bother Inventory-—Method of Scoring

 

The Degree of Bother Inventory to assess problems of infant be-
havior is administered following the other NPI items. The total prob-
lem score is calculated by assigning values of 1-4 to each of the six
items on the inventory. These are totaled with no attempt in weighting
the items. Broussard and Hartner (1971) found the Degree of Bother

Inventory to have high face validity.

89

Neonatal Perception Inventory

AVERAGE BABY

You probably have some ideas of what most little babies
are like. Please check the blank you think best describes

the AVERAGE BABY.

How much crying do you think the average baby does?

 

 

 

 

 

great deal a good bit moderate amount very little none

How much trouble do you think the average baby has in feeding?

 

 

 

 

great deal a good bit moderate amount very little none

How much spitting up or vomiting do you think the average baby
does?

 

 

 

 

great deal a good bit moderate amount very little none

How much difficulty do you think the average baby has in sleeping?

 

 

 

 

great deal a good bit moderate amount very little none

How much difficulty does the average baby have with bowel
movements?

 

 

 

 

 

great deal a good bit moderate amount very little none

How much trouble do you think the average baby has in settling
down to a predictable pattern of eating and sleeping?

 

 

 

 

great deal a good bit moderate amount very little none

9O

Neonatal Perception Inventory

YOUR BABY

Please check the blank you think best describes your child's

behavior during the first six months of his or her life.

How much

 

great deal

How much

 

great deal

How much

 

great deal

How much

 

great deal

How much

 

great deal

crying did your baby do?

 

 

 

a good bit moderate amount very little

 

 

 

 

 

 

 

 

 

none
trouble did your baby have with feeding?
a good bit moderate amount very little none
spitting up or vomiting did your baby do?
a good bit moderate amount very little none
difficulty did your baby have in sleeping?
none

a good bit moderate amount very little

difficulty did your baby have with bowel movements?

 

 

 

a good bit moderate amount very little

none

How much trouble did your baby have in settling down into
a predictable pattern of eating and sleeping?

 

great deal

 

 

a good bit moderate amount very little

none

91

Neonatal Perception Inventory

DEGREE OF BOTHER INVENTORY

Listed below are some of the things that have sometimes bothered

other mothers in caring for their babies.
if you were bothered about any of these.

We would like to know
Please place a check

in the blank that best describes how much you were bothered by
your baby's behavior in regard to these.

Crying

Spitting up or
vomiting

Sleeping

Feeding

Elimination

Lack of a predict-
table schedule

Other: (Specify)

 

 

 

 

 

 

 

very

little

 

 

 

very

little

 

very

little

 

 

very

little

 

 

very

little

 

 

very

little

 

 

very

little

 

 

very

little

 

very

little

 

 

great deal somewhat
great deal somewhat
great deal somewhat
great deal somewhat
great deal somewhat
great deal somewhat
great deal somewhat
great deal somewhat
great deal somewhat
great deal somewhat

very

little

 

none

 

none

 

none

 

none

 

none

 

none

 

none

 

none

 

none

 

none

APPENDIX H

CARDIAC SYMPTOM GROUPS--INDIVIDUAL SUBJECT DATA

92

Table 10

Individual Subject Data Values--Family Information Variables

 

 

Group Case Age Sex Age of Age of Mother Father Father Mother
# mother father educ. educ. occ.* emp.
at at

birth birth

 

 

 

 

 

 

 

 

 

 

 

I 18 Ol 07 F 3 -
26 05:10 F 20 24 ll 12 4 -
27 00:10 F 19 24 12 12 2 -
46 03:06 P 31 31 16 18 5 +
47 05:08 M 33 36 10 08 2 -
49 03:07 M 25 25 l2 l2 3 +
56 05:02 F 19 ll -
63 02:00 F 28 30 17 20 5 +
76 02:01 M 29 30 13 16 5 +
13 00:07 F 34 41 10 12 3 -
53 00:10 M 26 28 12 12 3 -
74 03:07 M 19 20 ll 12 2 -
67 00:05 P 23 26 12 13 3 -
32 05:02 F 21 24 09 12 l :__
Mean 02:11 M=5 25.15 28.52 12.00 13.25 3.15 +4

F=9 -10

II 43 10:01 M 29 29 15 2O 5 -
05 05:10 F 23 23 15 18 4 +
06 05:07 M 24 31 ll 12 3 -
15 00:07 F 23 24 14 13 2 -
12 02:03 M 28 28 12 12 3 -
16 00:07 F 26 28 12 16 l +
21 03:02 M 25 26 12 -
22 02:01 F 25 26 16 16 5 -
28 05:01 F 19 22 12 12 3 -
33 04:09 F 21 22 12 12 l -
44 04:08 F 16 18 10 12 3 -
57 03:09 F 35 15 +
59 02:04 F 18 18 12 12 3 -
65 04:00 M 21 34 ll 08 2 -
69 03:07 F 29 31 13 14 4 ' -
58 03:01 M 23 34 10 ll 2 -
75 04:05 M 31 38 12 16 5 :;__
Moan 03:11 M27 24.47 27.00 12.59 13.60 3.07 +3

l"+10 - 1 4

* Father occupation variable values: 1 = unemployed; 2 = unskilled;

3 I somi-skillnd; 4 I skilled; 5 = professional.

Table 10

(continued):

93

 

 

 

 

 

 

 

 

 

 

 

 

 

Group Case Age Sex Age of Age of Mother Father Father Mother
# mother father educ. educ. occ. emp.
at at
birth birth
III 20 08:97 F 23 29 l4 l6 5 -
25 00:09 M 25 27 12 12 3 —
38 11:03 M 20 24 09 10 2 +
39 07:10 M 23 25 12 10 l —
48 06:06 M 20 20 12 14 5 +
50 08:08 M 34 37 11 12 3 -
52 04:04 M 24 28 12 12 3 -
61 02:02 P 23 31 13 13 3 -
66 08:08 F 22 33 12 16 1 +
72 02:00 M 20 33 12 12 4 -
73 02:03 M 22 24 12 12 3 -
19 01:06 F 20 20 12 12 2 —
70 01:08 M 20 27 10 06 2 :;__
Mean 05:01 M=9 22.77 27.54 11.69 12.00 2.85 +3
F=4 -10
IV 02 03:06 M 27 29 16 15 5 -
04 05:08 M 23 24 l3 l6 3 +
10 06:10 M 19 20 12 13 3 -
14 02:05 M 29 33 16 25 5 +
23 04:10 M 28 29 12 12 3 +
29 04:08 M 26 30 l2 l6 4 -
30 04:08 M 26 30 12 16 4 -
31 03:07 M 24 26 13 16 5 -
35 06:08 F 25 25 12 14 3 +
36 02:07 M 25 29 14 16 5 -
37 05:04 F 26 28 12 14 l -
40 05:10 M 21 20 12 12 2 -
54 00:11 F 26 27 13 13 4 -
68 03:00 M 23 23 12 12 3 ':__
Mean 04:04 M=ll 24.86 26.64 12.93 15.00 3.57 +4
F=3 -10

 

 

94

 

 

 

 

 

 

 

 

 

 

 

Table 11
Individual Subject Data Values-—Neonatal Information Variables*
Group Case PP Labor AN Birth Birth Gest. ICU TRP Days Br.
# wgt. 1gth. age SCN in fed
hosp.
I 18 4:07 19.5 35 + + 55 —
26 + 2 - 7:04 19.5 40 - - 04 +
27 - 2 + 7:02 21.0 40 - - 03 -
46 + 3 + 7:14 20.5 40 — - 05 -
47 + 1 - 6:12 20.5 37 — + 24 -
49 — l + 4:06 18.5 34 + - l8 -
56 - 7:00 20.5 40 — - 05 -
63 + 2 - 8:02 20.0 40 - - 02 +
76 + 6 - 7:13 21.0 40 - - 05 -
13 — 9 — 6:04 20.0 40 - - l4 -
53 — 2 - 8:05 20.0 38 — - 08 -
74 - 9 - 7:05 21.0 42 - - 04 -
67 + 1 + 8:10 21.7 40 - - 06 +
32 :__ 2 :__ 7:10 21.0 41 - - 04 -
Mean +8 3.33 +7 7:00 20.34 39.07 +2 +2 08.36 +3
-6 -7 -12 -12 -11
II 43 - 2 + 7:08 19.0 40 - - 05 +
05 + 8 + 6:00 19.5 40 - - O4 -
06 + l - 8:00 21.0 40 - - 04 -
15 + 4 - 9:01 20.5 39 - - 08 +
12 + 2 + 5:11 20.0 41 - - 05 -
16 — 8 + 8:12 22.2 40 - - 08 +
21 + 6 + 9:06 21.0 40 + + 30 -
22 + 3 + 7:07 20.0 40 - - 04 +
28 — 3 - 7:13 20.0 40 - — 05 —
33 - 6 — 8:02 20.5 40 + — 09 +
44 + 7 + 6:11 19.5 40 - - 03 -
57 6:15 19.5 40 — - 08 -
59 - l + 7:08 22.0 40 - - 05 -
65 + 3 + 7:01 20.0 40 - - 03 -
69 — 2 - 8:12 21.0 40 + - 07 -
58 - 5 + 6:03 19.0 40 - - 03 —
75 — 7:06 17.0 40 — - 05 -
Mean :59— 4.07 E? 7:09 20.04 40.00 +3 +1 6.82 +5
—8 —5 -14 -16 -12
* Definitions of variable symbols and abbreviations: "PP" — planned

pregnancy; "Labor" — hours of labor: 1 = 1-2 hours, 2 a 3-4 hours,

3 = 5-6 hours, 4 = 7—8 hours, 5 = 9-10 hours, 6 = 11—12 hours,

7 = 13—14 hours, 8 = 15—16 hours, 9 = more than 16 hours; "AN" -
anesthetic administered; "Birth wgt." — birth weight in pounds and
ounces; "Birth 1gth.: — birth length in inches; "Gest. age" - ges—
tational age in weeks; "ICU — SCN" - admission to neonatal intensive
care unit or special care nursery: "TRP" — transported to another
hospital; ”Br. fed" ~ breast—fed.

Table 11 (continued);

95

 

 

 

Group Case PP Labor AN Birth Birth Gest. ICU TRP Days Br.
# wgt. 1gth. age SCN in fed
hosp.

III 20 + 3 + 7:06 19.0 40 - - 04 -
25 - 2 - 7:07 20.5 40 + + 05 -
38 - 3 - 7:14 21.0 40 - - 03 —
39 - 1 - 6:07 19.0 41 - - 06 +
48 + 3 - 8:07 20.0 40 - - 04 +
50 - l + 9:05 20.0 40 — - 04 +
52 + 1 — 7:11 21.0 40 - — O4 —
61 + 2 - 7:12 19.0 40 - - 05 -
66 + 4 + 7:05 20.0 40 - - 05 -
72 + 1 - 8:01 20.0 40 + + 21 +
73 + 2 - 7:02 19.0 40 - + 08 -
19 + 2 - 7:00 21.5 40 - - 04 -
70 :___ 4 :;__7:09 19.5 40 - - 08 i__
Mean +8 2.23 +4 7:10 19.98 40.08 +2 +3 6.23 +5

-5 -9 -ll -10 -8

Iv 02 + 6 + 8:05 21.0 40 - - 05 +
04 + 3 - 7:06 21.5 39 - - 04 -
10 + 2 — 6:14 19.5 40 - - 05 —
14 + 1 + 6:06 18.0 40 - - 04 -
23 + 2 - 5:02 18.0 36 + - 07 -
29 + 1 + 6:04 19.0 40 - — 10 +
30 + 1 + 7:03 20.0 40 - - 10 +
31 + 2 - 5:12 18.5 37 — - 05 +
35 + 6 - 6:00 19.0 39 - - 03 -
36 + 1 - 9:02 19.5 40 - - 04 -
37 - 2 + 6:07 21.5 40 - - 05 -
40 — 1 + 7:08 18.5 38 - - 05 —
54 + 1 + 6:15 18.0 40 — - 04 +
68 :;__ 2 :___8:14 22.0 40 — - 04 :___
Mean +12 2.21 +8 7:00 19.57 39.21 +1 +0 5.79 +5

-2 -6 -13 ~14 -9

 

 

 

 

 

 

96
Table 12

Individual Subject Data Values--Catheterization and Surgery Variables*

 

 

Group Case Cth. Cth. Cth. Srg. Srg. Srg. Fut. Fut.

# bly # Cth. Srg.

g o
H n
K 5

+
+

26
27
46
47
49
56
63
76
13
53
74
67
32
Mean

I I I
+ + + + + + I + + + + + +
lHIH+Ham>Hihlham>Hlb.H va H
+ + + + I + + + + + + I
+ + + + I + + + + + + I

 

 

I
o H'H‘F‘H’C>P‘C>H'OIO o o HI~

1.50 +8 +4

+
I._.I
b
+
N
I+
NH
NI
U1
\1
+
|._I
...:
+
I.._I
...:

II 43
05
06
15
12
16
21
22
28
33
44
57
59
65
69
58
75
Mean

I
+

‘+ + + + + + + I + + + I I I I I + 5 I+ + + + + + + + + + + + + +

I
I
'NHHI—‘F—‘NI—‘OI—‘HHOOOOON

 

+3 +10 +2 +6 +4
-17 ~14 -7 —15 -11 -13

 

I

9 H H H HIo H'H'o HIH-H-o o o OIO H
I
I

+
H
’u—J
+
O
O
(I)
to
W
KO

I
0‘

 

* Definitions of variable symbols and abbreviations: "Cth." - cathe-
terization to date; "Cth. bgh" - catheterization before going home
from hospital as a newborn; "Cth. bly" — catheterization before one
year of age; "Cth. #” — total number of catheterizations to date;

"Srg." — surgery to date; "Srg. blv" - surgery before one year of
age; "Srg. #" — total number of surgeries to date; "Fut. Cth." — fu-

ture catheterization planned; "Fut. Srg." - future surgery planned.

97

Table 12 (continued):

 

 

Group Case Cth. Cth. Cth. Cth. Srg. Srg. Srg. Fut. Fut.

 

 

 

 

# bgh bly # bly # Cth. Srg.
III 20 + - - 2 + - 2 - -
25 + + + 1 - — 0 + +
38 + — - 4 + - 2 + +
39 + — + 3 + + 2 - -
48 + - - 3 + - 1 - -
50 + - + 4 + + 2 + -
52 + - - 1 + - 1 + -
61 + - + l - - 0 + +
66 + - - 1 + - 1 + -
72 + + + 2 + + 2 + -
73 + + + 2 + + 2 + +
19 + — + 1 - - 0 + +
70 + - + 1 :;__ + 1 + +
Mean +13 +3 +8 2. 00 +10 375'" 1772—3— 330 IE—
-0 -10 -5 —3 -8 -3 -7
IV 02 - - - 0 - - 0 — -
04 - - ~ 0 — - 0 - -
10 — - - 0 — - .0 — —
14 - - — 0 - - 0 — -
23 - - - 0 - - 0 — -
29 - - - 0 - - 0 - -
30 - - - 0 — - 0 - -
31 - - - 0 - - 0 - -
35 - - - 0 - - 0 - -
36 — - - 0 — - 0 - -
37 - - — 0 - - 0 - -
40 - - - 0 - - 0 - -
54 - — - 0 - - 0 - -
68 +__ '__. I__ __1 ;_ :__ _0 +__ ;__
Mean +1 +0 +1 0.07 +0 +0 0.00 +1 +0

-13 -14 —13 —14 -14 —l3 -l4

 

 

98

Table 13

Individual Subject Data Values--Physica1 Measurement
Information Variables*

 

 

 

 

 

Group Case Weight Weight Height Height Head Head
# % % Circ. Circ.
%
I 18 14.5 03 29.7 05 46.5 25
26 41.2 03 43.0 15 50.5 20
27 11.5 03 26.0 03 42.0 03
46 33.0 45 40.5 80 50.0 65
47 34.0 03 41.5 03 54.5 90
49 28.0 03 34.0 03 50.5 30
56 40.0 40 45.5 50 50.0 40
63 26.0 30 33.0 25 46.5 10
76 25.0 22 34.7 45 50.7 85
13 09.0 03 25.5 25 39.5 03
53 16.5 10 29.5 75 45.0 20
74 34.0 35 38.5 20 49.0 25
67 12.5 10 26.0 80 41.5 25
32 37.0 20 43.5 50 50.7 50
Mean 16.43 34.21 35.07
II 43 58.5 05 54.0 30 53.2 55
05 42.0 20 45.2 40 51.0 50
06 44.0 35 44.0 31 51.5 35
15 17.2 80 26.0 75 45.7 95
12 28.0 30 32.2 03 46.0 03
16 16.7 75 28.0 97 43.0 50
21 32.0 30 36.0 03 49.5 22
22 28.0 55 35.0 65 49.5 80
28 44.0 35 44.5 35 54.4 95
33 36.0 20 41.0 20 51.5 70
44 34.0 10 40.0 05 52.0 60
57 29.0 05 36.2 03 48.5 20
59 29.0 50 35.5 50 48.0 30
65 38.0 60 39.5 20 52.0 75
69 35.0 55 40.5 80 51.0 75
58 37.0 82 37.0 20 49.0 18
75 38.0 50 43.2 75 52.0 50
Mean 41.00 38.35 51.94
* Definitions of variable symbols and abbreviations: "Weight" - mea—
sured in pounds; "Weight %" — percentile weight for age; "Height" -
measured in inches; "Height%" - percentile height for age; "Head
Circ." - head circumference in centimeters; "Head Circ.%" - percen-
tile head circumference for age.

99

Table 13 (continued):

 

 

 

Group Case Weight Weight Height Height Head Head
# % % Circ. Circ.
‘25
III 20 44.0 03 46.7 03 49.5 03
25 12.5 03 26.0 03 42.0 03
38 84.0 50 59.5 50 53.5 50
39 54.0 55 50.0 75 50.5 10
48 50.0 50 49.5 80 52.0 40
50 50.0 45 50.5 60 53.2 75
52 32.0 10 39.5 10 50.0 20
61 30.0 75 34.5 40 49.5 75
66 57.0 55 51.0 60 50.5 10
72 28.2 60 34.0 30 49.0 50
73 19.7 03 34.0 15 47.9 10
19 24.0 20 32.0 20 47.0 10
Mean 38.77 38.92 29.31
IV 02 36.0 70 40.5 80 51.0 70
04 40.0 15 44.0 23 51.5 26
10 49.0 50 47.0 70 53.5 50
14 30.0 50 37.0 77 50.7 75
23 42.0 58 43.0 38 52.5 60
29 35.0 32 39.0 01 51.5 35
30 42.0 70 43.5 60 53.0 75
31 42.0 97 41.7 90 51.5 80
35 47.0 50 46.7 60 52.5 75
36 30.0 46 36.5 54 49.5 35
37 46.0 70 44.7 60 51.5 80
40 44.0 25 44.0 20 52.0 25
54 22.0 76 28.0 25 47.0 80
68 31.0 40 39.7 85 50.5 65

 

Mean 53.50 53.07 59.36

 

 

100
Table 14

Individual Subject Data Values--Psychological Assessment Variables*

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Group Case NPI NPI NPI DDST BSID BSID SBIQ
# OWN AVG DOB MDI PDI
I 18 A—l 070 056
23 13 16 10 N-3 091
27 19 16 14 Q-2 108 073
46 20 13 18 N-3 111
47 17 15 15 Q-2 072
49 ll 14 11 A-l 061
56 N-3 100
63 07 13 06 Q—2 079 096
76 08 12 06 N—3 109 103
13 - 20 17 15 N-3 088 076
53 19 14 08 Q—2 108 078
74 13 14 11 Q-2 085
67 18 l4 l4 N-3 096 099
32 23 18 22 N-3 100
Mean 15.67 14.67 12.50 2.36 94.00 83.00 88.57
II 43 17 13 13 094
05 16 14 14 N-3 103
O6 11 ll 10 A—l 088
15 09 12 08 N-3 115 132
12 16 14 17 N-3 065 070
16 12 14 13 N-3 123 117
21 ll 13 13 A-l 073
22 17 11 16 N-3 121 109
28 24 14 19 N-3 107
33 19 15 18 Q—2 094
44 19 17 12 Q-2 088
57 Q-2 092
59 12 13 09 N-3 077 099
65 22 20 06 N-3 105
69 19 17 13 A—l 066
58 ll 13 05 N-3 077
75 22 14 20 N—3 105
Mean 16.06 14.31 12.88 2.44 100.20 105.40 91.00
* Definitions of variable symbols and abbreviations: "NPI-OWN" - Neo-
natal Perception Inventory, "Own Baby" Rating Scale; "NPI—AVG" - Neo-

natal Perception Inventory, "Average Baby" Rating Scale; "NPI-DOB" —
Neonatal Perception Inventory, "Degree of Bother" Rating Scale (in
the above three scales lower numbers indicate more favorable rat-
ings); "DDST" — Denver Developmental Screening Test (for computation
purposes, normal = 3, questionable = 2, abnormal = 1); "BSIDMDI" -
Bayley Scales of Infant Development--Mental Scale; "BSIDPDI" — Bayley
Scales of Infant Development—-Motor Scale; "SBIQ" — Stanford—Binet
Intelligence Quotient (in the above three scales, 100 = average score
for age.

101

Table 14 (continued):

 

 

 

 

 

 

 

Group Case NPI NPI NPI DDST BSID BSID SBIQ
# OWN AVG DOB MDI PDI
III 20 15 13 09 093
25 10 14 09 Q—2 089 058
38 15 14 12 104
39 27 14 21 089
48 10 12 12 091
50 10 12 06 093
52 22 17 19 Q-2 091
61 17 14 15 Q-2 108 108
66 12 17 10 093
72 25 15 14 N-3 O96 077
73 15 12 14 Q-2 087 075
19 15 12 14 N-3 109 094
70 20 17 14 N-3 110 102
Mean 16.62 14.31 13.00 2.43 99.83 85.67 93.86
IV 02 13 16 13 N—3 109
04 12 13 11 N—3 103
10 16 18 13 120
14 12 14 12 Q-2 084 088
23 14 14 15 N-3 103
29 14 13 14 N-3 088
30 11 13 09 N-3 096
31 18 16 13 N 107
35 14 17 11 089
36 14 15 07 N-3 124 102
37 13 15 12 Q-2 083
40 13 20 10 N—3 084
54 10 13 08 N-3 117 098
68 08 11 08 N-3 089

 

 

 

 

Mean 13.00 14.86 11.14 2.83 108.33 98.00 97.36

 

 

 

 

APPENDIX 1

GROWTH PERCENTILE GROUPS—-

PSYCHOLOGICAL ASSESSMENT VARIABLES

102

Table 15

Weight Percentile Groups--Psychological Assessment Variables

All subjects were assigned to groups based on their weight
"W—I"--all subjects above the

16th percentile for weight; "W-II"—-a11 subjects at or below

the 16th percentile and above the 3rd percentile for weight;

"W-III"--a11 subjects at or below the 3rd percentile for

percentile values as follows:

weight.

(Variable symbols and abbreviations are the same as
in previous tables.)

 

 

 

GRP W-I W-II W-III Totals
N X X N X N X F df
S.D. S.D. S.D. S.D. ratio
VAR
NPI 41 15.02 17.83 8 3.59 55 15.13 0.97 2/52
OWN 4.98 3.31 3.59 4.59
NPI 41 14.39 15.33 8 1.69 55 14.53 0.53 2/52
AVG 2.22 1.86 1.69 2.09
NPI 41 12.37 12.83 8 2.64 55 12.38 0.05 2/52
DOB 4.31 3.65 2.64 3.99
DDST 35 2.66 2.33 8 0.76 53 2.51 3.62* 2/46
0.64 0.52 0.76 0.63
BSID 14 102.64 102.00 5 88.40 21 99.19 1.24 2/18
MDI 19.13 8.49 13.46 16.66
BSID 14 100,07 88.50 5 67.60 21 91.33 9.32@ 2/18
PDI 15.60 14.85 9.76 13.73
SBIQ 28 94.71 94.20 4 79.25 37 92.97 2.93+ 2/34
12.27 5.50 15.41 11.67

 

+ indicates significance at .10 level.
* indicates significance at .05 level.
@ indicates significance at .01 level.

 

 

103

Table 16

Height Percentile Groups-~Psychologica1 Assessment Variables

All subjects were assigned to groups based on their height
percentile values as follows: "H—I"--all subjects above the
16th percentile for height; "H—II"--a11 subjects at or below
the 16th percentile and above the 3rd percentile for height;
"H-III"--a11 subjects at or below the 3rd percentile for
height. (Variable symbols and abbreViations are the same as
in previous tables.)

 

 

 

GRP w+I__ wsIl_ w-II;_ Eptals
N x N x N x N x F df

S.D. S.D. S.D. S.D. ratio

VAR

NPI 43 15.37 17.25 14.13 55 15.33 0.60 2/52

OWN 4.95 4.03 3.23 4.62

NPI 43 14.53 15.50 14.00 55 14.53 0.67 2/52

AVG 2.23 2.38 1.07 2.08

NPI 43 12.19 4 13.75 8 12.75 55 12.38 0.31 2/52

DOB 4.22 3.86 2.87 3.97

DDST 36 2.69 5 2.00 8 2.00 49 2.51 6.01@ 2/46
0.58 0.71 0.76 0.61

BSID 16 104.00 2 78.50 3 87.33 21 99.19 3.18+ 2/18

MDI 15.48 12.02 21.55 15.28

BSID 16 99.00 2 65.50 3 67.00 21 91.24 10.08@ 2/18

PDI 14.85 14.35 7.94 13.45

SBIQ 28 96.00 3 91.00 6 79.83 37 92.97 4.99* 2/34
11.51 3.00 13.04 11.11

 

+ indicates significance at .10 level.
* indicates significance at .05 level.
@ indicates significance at .01 level.

 

 

104

Table 17

Head Circumference Percentile Groups--Psychological Assessment Variables

All subjects were assigned to groups based on their head
circumference percentile values as follows: "HC-I"--a11
subjects above the 16th percentile for head circumference;
"HC-II"--a11 subjects at or below the 16th percentile and
above the 3rd percentile for head circumference; "HC-III"-—
all subjects at or below the 3rd percentile for head circum-
ference. (Variable symbols and abbreViations are the same as
in previous tables).

 

 

 

GRP Hc+1_ H0111 HC-III Tgtals
N x N x N x N x F df

S.D. S.D. S.D. S.D. ratio

VAR

NPI 45 15.16 16.20 16.00 55 15.33 0.16 2/52

own 4.46 7.66 3.94 4.66

NPI 45 14.49 14.60 14.80 55 14.53 0.05 2/52

AVG 2.17 2.30 1.64 2.10

NPI 45 12.27 13.00 12.80 55 12.38 0.10 2/52

DOB 3.93 5.57 3.63 3.99

DDST 42 2.52 2.33 2.50 49 2.51 0.11 2/46

0.71 0.58 0.58 0.68

BSID 14 104.07 3 92.00 4 87.50 21 99.19 1.76 2/18

MD; 17.18 16.09 17.60 16.26

BSID 14 97.57 3 91.00 4 69.25 21 91.24 4.34* 2/18

pp: 18.78 14.18 7.89 16.08

SBIQ 34 93.09 2 91.00 1 93.00 37 92.97 0.02 2/34
13.18 2.83 0.00 12.63

 

+ indicates significance at .10 level.
* indicates significance at .05 level.
@ indicates significance at .01 level.

 

 

Failure—to—thrive -vs.- non-Failure-to-thrive Groups--

105

Table 18

Psychological Assessment Variables

All subjects were assigned to groups based on their com-
bined weight, height, and head circumference percentile val-
"F-I"--all subjects above the 16th percen-
tile for weight, height, and head circumference; "F-III"--
all subjects at or below the 3rd percentile for weight, height,

ues as follows:

and head circumference.

No "F-II" group was formed because no subjects were at or
below the 16th percentile and above the 3rd percentile in all

three measurement categories.

tions are the same as in previous tables.)

(Variable symbols and abbreVia-

 

 

 

 

GRP F-I__ F-III Tgtals
N X N X N X F df

S.D. S.D. S.D. ratio

VAR

NPI 34 14.97 3 14.67 37 14.95 0.01 1/35

OWN 4.71 4.51 4.63

NPI 34 14.38 3 14.33 37 14.38 0.00 1/35

AVG 2.32 1.53 2.25

NPI 34 12.12 3 10.67 37 12.00 0.33 1/35

DOB 4.24 2.89 4.11

DDST 30 2.70 2 2.00 32 2.66 2.68 1/30
0.60 0.00 0.58

BSID 11 107.55 2 98.50 13 106.15 0.58 1/11

MDI 15.69 13.44 14.84

BSID 11 103.00 2 65.50 13 97.23 11.59@1/11

PDI 14.65 10.61 13.72

SBIQ 24 96.21 1 93.00 25 96.08 0.07 1/23
12.27 0.00 12.01

+ indicates significance at .10 level.

* indicates significance at .05 level.

@ indicates significance at .01 level.

 

 

106

Table 19

Summary Table of Growth Percentile Groups--Psychological Assessment

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Variables

GROUP DDST BSIDMDI BSIDPDI SBIQ__

N X S.D. N X S.D. N X S.D. N X S.D.
W—I 35 2.66 0.64 14 102.64 19.13 14 100.07 15.60 28 94.71 12.27
W-II 6 2.33 0.52 2 102.00 8.49 2 88.50 14.85 5 94.20 5.50
W-III ._§ 2.00 0.76 _§. 88.40 13.46 __5 67.60 9.76 _;4 79.25 15.41
Totals 49 2.51 0 63 1 99.19 16.66 21 91.33 13.72 37 92.97 11.67
F ratio 3.62* 1.24 9.32@ 2.93+
df 2/46 2/18 2/18 2/34
H—I 36 2.69 0.58 16 104.00 15.48 16 99.00 14.85 28 96.00 11.51
H-II 5 2.00 0.71 2 78.50 12.02 2 65.50 14.35 3 91.00 3.00
H—III -_§ 2.00 0.76 _§_ 87.33 21.55 _3_ 67.00 7.94 ..2 79.83 13.04
Totals 49 2.51 0.61 1 99.19 15.28 21 91.24 13.45 37 92.97 11.11
F ratio 6.01@ 3.18+ 10.08@ 4.99*
df 2/46 2/18 2/18 2/34
HC—I 42 2 52 0.71 14 104.07 17.18 14 97.57 18.78 34 93.09 13.18
HC-II 3 2 33 0.58 3 92.00 16.09 3 91.00 14.18 2 91.00 2.83
HC—III _4 2.50 0.58 ._4 87.50 17.60 ._4 69.25 7.89 ._1 93.00 0.00
Totals 49 2 51 0 68 1 99.19 16.25 21 91.24 16.08 37 92.97 12.63
F ratio 0.11 1.76 4.34* 0.02
df 2/46 2/18 2/18 2/34
F—I 30 2.70 0.06 11 107.55 15.69 11 103.00 14.65 24 96.21 12.27
F-III ._g 2.00 0.00 _2_ 98.50 13.44 _3_ 65.50 10.61 _1_93.00 0.00
Totals 32 2 66 0 58 13 106.15 14.84 13 97.23 13.72 25 96.08 12.01
F ratio 2.68 0.58 11.59@ 0.07
df 1/30 1/11 1/11 1/23

 

+ indicates significance at .10 level.
* indicates significance at .05 level.
@ indicates significance at .01 level.

 

 

APPENDIX J

CHILDREN HAVING HAD SURGERY COMPARED

TO CHILDREN NOT HAVING HAD SURGERY-—

PHYSICAL AND PSYCHOLOGICAL VARIABLES

107

Table 20

Surgery —vs.- non-Surgery Croups--Physica1 Measurement Variables

For the purposes of this comparison all children with only
insignificant heart ailments (Group IV) were excluded since
they would probably never require surgery.

The remaining subjects were assigned to the two groups as
follows: "Surgery"——a11 children who had already undergone
a surgical procedure (either a palliative procedure or a
complete repair); "non-Surgery"--all children who had not yet
undergone surgery.

 

 

 

__ Totals N=44
GRP SURGERY NON-SURGERY X S.D. F df
N=28 N=16 ratio
VAR
Weight% 31.46 23.21 34.38 29.17 32.52 25.20 0.13 1/42
HeightZ 38.53 27.69 34.88 30.47 37.20 28.38 0.17 1/42

Head Circum— 39.93 26.81 39.81 31.94 39.89 28.41 0.00 1/42
ferenceZ

 

 

108

Table 21

Surgery -vs.- non-Surgery Groups--Psychological Assessment Variables

For the purposes of this comparison all children with only
insignificant heart ailments (Group IV) were excluded since
they would probably never require surgery.

The remaining subjects were assigned to the two groups as
follows: "Surgery"--all children who had already undergone
a surgical procedure (either a palliative procedure or a
complete repair); "non-Surgery"--a11 children who had not yet
undergone surgery. (Variable symbols and abreviations are
the same as in previous tables).

 

 

 

GRP SURGERY NON-SURGERY _ TOTALS
N X S.D. N X S.D. N X S.D. F df
ratio

VAR

NPI-OWN 25 17.08 5.27 16 14.63 4.27 41 16.12 4.85 2.44 1/39
NPI-AVG 25 14.68 2.30 16 14.00 1.46 41 14.41 2.00 1.10 1/39
NPI-DOB 25 12.76 4.81 16 12.88 3.35 41 12.80 4.34 0.01 1/39
DDST 21 2.43 0.75 16 2.38 0.72 37 2.41 0.72 0.05 1/35
BSIDMDI 8 99.63 15.97 10 96.10 19.06 18 97.67 17.25 0.17 1/16
BSIDPDI 8 87.38 18.49 10 92.30 23.11 18 90.11 20.58 0.24 1/16
SBIQ 20 92.00 10.72 6 88.17 18.84 26 91.16 12.58 0.41 1/24

 

 

APPENDIX K

SURGERY BEFORE ONE YEAR OF AGE

COMPARED T0 N0 SURGERY BEFORE ONE YEAR--

PHYSICAL AND PSYCHOLOGICAL VARIABLES

109

Table 22

Surgery Before One Year of Age -vs.- No Surgery Before One Year of Age--
Physical Measurement Variables

For the purposes of this comparison only children who had

 

 

 

already undergone surgical intervention were included in the
groupings.
GRP SURGERY N0 SURGERY
BEFORE ONE BEFORE ONE TOTALS
YEAR YEAR
NXS.D. NXS.D.NXSD.Fdf
ratio
VAR __‘
Weight% 11 26.18 22.94 33 34.64 25.95 44 32.52 24.97 0.92 1/42
Heightz 11 43.00 29.53 33 35.27 28.26 44 37.20 28.23 0.60 1/42
Head Circum— 11 37.27 29.70 33 40.76 28.39 44 39.89 28.37 0.12 1/42

ferenceZ

 

 

110

Table 23

Surgery Before One Year of Age -vs.- No Surgery Before One Year of Age--
Psychological Assessment Variables

For the purposes of this comparison only children who had
already undergone surgical intervention were included in the
groupings.

 

 

 

GRP SURGERY NO SURGERY

BEFORE ONE BEFORE ONE TOTALS

YEAR YEAR __
N x S.D. N x S.D. N x S.D. F df
ratio

VAR
NPI-OWN 9 17.67 6.20 32 15.69 4.62 41 16.12 4.93 1.11 1/39
NPI-AVG 9 13.44 1.88 32 14.69 2.01 41 14.41 1.96 2.77 1/39
NPI-DOB 9 12.56 4.98 32 12.88 4.23 41 12.80 4.34 0.04 1/39
DDST 9 2.44 0.73 28 2.39 0.74 37 2.41 0.72 0.03 1/35
BSIDMDI 8 99.63 15.97 10 96.10 19.06 18 97.67 17.25 0.17 1/16
BSIDPDI 8 87.38 18.49 10 92.30 23.11 18 90.11 20.58 0.24 1/16

SBIQ 3 91.33 2.08 23 91.09 13.51 26 91.12 12.69 0.00 1/24

 

 

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