What are some psychosocial implications of congenital

craniofacial anomalies? What factors contribute to the

current situation? A brief historical, comparative survey
of pertinent science and noted thinkers.

"I just wanna be normal Doctor, give me that old fashioned

normality"
--Actress Uma Thurman as Sissy Hankshaw pleading
to Dr. Dreyfus in the film "Even Cowgirls get the Blues"

Dedication

To Dr. Robert W. Blakeley

Professor of Speech Pathology

Director, Craniofacial Disorders Program

Oregon Health Sciences University
Child Development & Rehabilitation Center

Thank you

Your effort and treatment on my behalf have

given me the voice to make this oral presentation

Table of Contents

Page 1

Introduction

Page 2

Birth

Page 6 . Freud

Page 7

Hi story

Page 9

Teasing

Page 12

Speech

Page 15

Bi bl i ography

Final Page

Reasearch Outline

Introduction

~" "'." '"

~
My interest in the subject of the psychosocial
implications of congenital craniofacial anomalies is
personal.
palate.

I am afflicted with a unilateral cleft lip and

I welcome the opportunity to write and speak on the

subject to promote further public understanding.

The

process also provides me with greater self-awareness.

This report will focus on persons with congenital
anomalies as opposed to acquired disfigurement.

Acquired

craniofacial disfigurement results from accidents, fires and

illness.

The psychosocial implications for each group vary

and I will note them throughout the report.

My presentation will include photographs of persons
with various examples of craniofacial disorders.

Unlike

other disabilities, facial disfigurement is to a large

extent visual, and a picture really is worth a thousand
words.
I will begin this paper with the story of a young
mother and the birth of her son.

I'll also discuss Freudian

implications, historical background, the subject of teasing

and speech concerns.
In America, about 4 million babies are born each year.
Between the 7th and 8th week of gestation, the nasomedial
process completes the fusing of the philtrum of the lip.
This fails to occur in about 1 of every 700 live births,
resulting in about 5,700 new cleft cases per year.

Page-l

Birth, the beginning of mother-child relationship

I would like to begin this project by considering the

thoughts of a young mother, Rita Brzozowski, and her
reaction to the birth of her son, Adam.

Rita's story

appeared in the May/June 1992 issue of AboutFace, a

craniofacial support group newsletter.

Rita begins,

"For most people, having their first child is

an exciting event.

There are the usual

concerns about what could go wrong, but a

normal, healthy baby is expected.

When our

first child, Adam, was born this was not the

case.

It started with a discernible hush in

the delivery room.

"Just a hare lip",

replied my obstetrician.
baby's face,

Not able to see the

I tried to recall anything I

knew about this condition ... When I saw him,

my heart sank.

This was not the perfect baby

I had envisioned - the one with the rosy

checks, delicate lips and upturned nose.
This baby's face was disfigured ... As I held
my newborn son, all I could see was this
defect ... I felt I was in a dream and held
someone else's child."
Later Rita would say,
blow.

"My ego had suffered a major

I did not feel pride in showing my baby to others.

Even a trip to the pediatrician was a challenge to my pride

Page-2

and vanity.

In the waiting room I would keep Adam's face

hidden over my shoulder."

My information indicates that Rita's experience is not
unusual.

Brantley and Clifford (1979b) found that mothers

of children with cleft lip and/or palate reported

significantly greater negative recollections of the
postnatal period than mothers of normal children. Other
reactions have been more negative,

the child.

including abandonment of

This is particularly true in Russia (Blakeley),

Korea and to a lesser extent, China (Li).

~ .~"
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t!.- ~-
All of this ~-~~~

information points to an important fact: The interaction

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between mother and child is a critical factor in determining

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the psychological adjustment of these children. ~6\A ~ to.~

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A recent study entitled The Role of Maternal Factors in

the Adaptation of Children with Craniofacial Disfigurement
was completed at Harvard Medical School and Children's
Hospital, Boston, MA (Campis, DeMaso, Twente,

1993) and

reported in The Cleft Palate-Craniofacial Journal

1995).

(January

This study hypothesized that maternal adjustment,

perceptions, and social support would better predict child

adaptation to craniofacial disfigurement than medical
severity.

Of the 77 children (ages 6-12)

in the study,

33

had cleft lip and/or palate, the other 44 had a more severe
deformity.

The study found that maternal adjustment and

maternal perceptions of the mother-child relationship were

more potent predictors of children's emotional adjustment
than either medical severity or maternal social support.
This study also reported that the degree of facial

Page-3

disfigurement had no relationship to child or maternal

perceptions, but that having a comorbid severe medical

condition was related to greater behavior problems in

children.

This study cited nine prior studies which

indicated that children with craniofacial disfigurement have

difficulties in psychological adjustment and two studies to

the contrary.

The study also cited other conflicting

information in almost every category.

The major limitation

of this study was that the evaluation of child adjustment

relied." on, p~~le~t r!~~~Ett_

Also, with .aJ..~

gedo . nanc~ ~~ .upper rS&~)
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LA ~ VI
'd<1 Q/)'tI""_ e..:-. ~_.fr

SES families in this study, caution is he word regarding ~ ~

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~ralization

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of findings.

Another study I found was done at the University of

Washington School of Medicine in Seattle, entitled

"Psychological Functioning of Children with Craniofacial

Anomalies and Their Mothers: Follow-up from Late Infancy to

School Entry" (Speltz, Morton, Goodell, Clarren, 1992).

In

this study, 23 mothers and their 5- to 7-year old children

with craniofacial anomalies (CFA) who were assessed in an

earlier study (Speltz, et al., 1990) were followed.

Despite

the small sample size and high rate of control-group

attrition, this study is important because longitudinal

research on the psychological development of CFA children

and adolescents is almost nonexistent.

The results of this

study indicated that a (1) a sizable minority (18%) of the

children with CFA had clinically significant behavior-

problem scores;

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(2) individual differences of CFA children

were predicted by observational measures of earlier mother

Page-4

infant interaction;

(3) mothers of CFA children with visible

defects reported less favorable social support than mothers

of CFA children without visible defects.
One interesting aspect of this survey was that the
potential predictor variables used were based on
observational measures of mother-infant play and teaching
interactions.

These measures are infrequently used in CFA

psychological research despite their widespread application

in other areas of developmental psychology.

Also, mothers

of CFA children reported higher levels of emotional distress

and greater marital conflict than controls, as reported on
standardized questionnaires.

In the Child Behavior

Checklist (CBCL) portion of this study, girls with CFA had

mean scores above the 85th percentile for their normative
group, but boys with CFA had mean scores very near their
normative average.

In addition 18% of the CFA children had

CBCL scores above the 95th percentile, indicating the need

for clinic-referral for psychiatric problems (compare with
non-CFA children at considerably less than 5%). The
researchers suggested that the mother's child-directed
orientation during play with her infant or toddler may
predict maternal behavior problem reports up to 4 years
later; higher levels of child-directed play skill were
associated with lower subsequent CBCL scores.
As we have seen from the foregoing information, there
are early psychological implications for persons with
congenital craniofacial anomalies.

Juxtaposed with acquired

disfigurement in later life, these implications are unique.

Page-5

Freudian Considerations
From a Freudian psychosexual developmental perspective,
cleft lip and palate offers some interesting considerations.
These considerations involve the first psychosexual stage,
the Oral Stage.
"According to the theory, from birth to age one, the
mouth, tongue, and gums are the focus of pleasurable
sensations in the baby's body, and feeding is the most
stimulating activity." (Berger, 1994)
Feeding an infant with cleft lip and palate presents a
challenging set of physical circumstances.

"Children with a

cleft palate cannot create sufficient negative pressure to

suck milk, which is expressed from the nipple between the
upper and lower gum pads, because of the absence of a
palatal seal" (Berkowitz, 1994).

One mother described each

feeding of her cleft palate infant as a "nightmare"

(AboutFace January/February 1993).
In addition to feeding problems, surgery of the lip,
palate and gums of an infant presents an opportunity for
pain and trauma.

Presurgical orthopedic alignment

procedures as well as postsurgical concerns are another

source of possible interference with oral stage development.
In addition postsurgical feedings are sometimes especially
difficult.
I feel that the above issues place an afflicted infant
"at risk" for possible oral stage fixation.

This is not a

concern with craniofacial disfigurement acquired later in

life.

Page-6

Historical Perspective
Dr. Benjamin M. Spock, in his latest book A Better
World For Our Children, provides a poignant example of the
negative attitudes confronting persons with congenital
deformities.

On page 21 of his book, Dr. Spock relates a

story told by his mother and the impact the remarks made on
him.

"She taught us that sinful thoughts were as harmful as

deeds, and to touch ourselves "down there" was not just

sinful but might cause birth defects in our children.

After

four years of medical school and four residencies, I thought

I had long outgrown such teachings, but I recall when our
first child was born I returned from the hospital's nursery
to my wife's room to exclaim happily,

"Mike has ten fingers

and ten toes!"

Attorney Allen Fagin spoke at the 1992

~conference

on facial disfigurement and noted that until recently a

number of major American cities had "ugly laws" that imposed
fines on "unsightly" people who were seen in public places.
An example was the Chicago municipal code which, until 1974,
fined persons who appeared in public who were "diseased,
maimed, mutilated or in any way deformed, so as to be an
unsightly or disgusting object".
In addition, I found examples dating from Medieval
England.

One example dating from the late eleventh or

twelfth century is the first evidence for both cleft lip and
palate in British archaeology.

"Despite the inability to

breast-feed, and the possible social stigma, the individual

had survived into adulthood" (CPJ).

Page-7

Another example is found in documentary evidence from

sixteenth century Kent.

The document, with an illustration

of the child, is dated 1568.

for two reasons.

This document is interesting

While descriptive of the facial cleft, the

document clearly repudiates the child's mother for being

unmarried.

The headline of the document proclaims "The

forme and shape of a monstrous child", and describes the

cleft lip as "the mouth slitted on the right side, like a
Libardes [lizard's] mouth, terrible to beholde".

The

document also proclaims "A warnying to England", describes

the mother, one Marget Mere as,

" ... being unmaryed, played

the naughty packe, and was gotten with childe ... "

The

document suggest that this deformed child should be a

warning to those indulging in a sinful life, and thus move
them to repentance.

Page-8

"Teasing"
I'd like to begin this section with a brief quote from
the book "Beauty is the Beast, Appearance-Impared Children
in America", by Ann Hill Beuf.

"On Monday, March I, 1988,

an American sixth-grade student walked into his elementary

school classroom and shot himself.

He did this because his

classmates had teased him about being overweight".

Clearly

the time has come to address the problem of "teasing".

The first step in confronting the issue of "teasing" is
to give this activity a more appropriate name: Verbal
Assault, based on disability or appearance.
In a sense, it is easy to understand why children
verbally assault those who look different.

As Dr. McCurdy

states in his book "The Complete Guide to Cosmetic Surgery",

"Young children are extremely perceptive of differences in
appearance, and, as they are relatively uninhibited in their
social interactions, such differences are freely pointed
out" .
Sociologist

Ma~regor

notes that derisive laughter is

also a potent and destructive force.

She writes "These

reactions to derisive laughter appear to be universal.

The

Hopi Indians, well aware of its effect, could and did

deliberately drive an offender in the community to insanity
by the simple punishment of laughing at him".

;vi.

~ l 'o~ )

Two other groups of unlikely offenders are health care

providers and teachers.

"When a child is born with impaired

appearance, many hospital staff members employ the term

F.L.K. ("funny looking kid") to describe the infant to one
another (Beuf).

"Use of the "F.L.K." term constitutes an

Page-9

act of objectification.

So does any use of language that

refers to the child by his or her disorder such as "the

cleft palate in room 320"

(Beuf).

"That is, by focusing on

the master-status of "person-with-impaired-appearance" and

thus ignoring the traits possessed by the child as an
individual, the stigmatizer manages to reduce the victim to
the position of a thing rather than a person"

(Beuf).

Trivialization was used by some doctors to remind the

children of people who were worse off than they were, with
comments such as,

"You're lucky you don't have cancer."

Surely doctors do not set out to wound the feelings of their

young patients, but they have been taught in medical school
to judge the seriousness of a medical problem in terms of
its life-threatening nature.
In a New York Times story on physical disfigurement,
author Jill Krementz said that while many of the disfigured
children she interviewed received support from their peers,
a few were teased mercilessly or even attacked by
schoolmates because of how they look.

who had a really painful time

f;~m

who had facial disfigurements, ,;

"The only children

their peers were the ones

~s. Krementz said, adding

that children who are missing limbs or have other

disabilities are more likely to receive comments on how well
they are doing.
Krementz's observations have been noted by Macgregor
who states;
" ... there are two other handicapping aspects
associated with dento-facial deformity.

Page-IO

In the

first place, the area in and around the mouth is

both emotionally charged and strongly connected
with one's self-image.

As an instrument of speech

and eating, as well as a mirror of emotions, it

also has unique social and psychological
implications and symbolic meaning.

Any

abnormality in this area, therefore, is not only

highly visible and obtrusive but - as research has
shown - tends to evoke a type of aversion which is
J F~
both esthetic and sexual. jV~
I

Teachers are another source of problems for afflicted

children (The Providence Sunday Journal).

Examples cited by

Beuf include a teacher ridiculing a student who lost a

contact lense and another who's home-room teacher didn't see
the harm of a student being called "Dumbo ears" because of
protruding ears.
Legislation such as the American's with Disabilities
Act, the Rehabilitation Act of 1973, and the recently passed
Washington State bill # 5474 on Disability Discrimination
should be utilized to prevent the abuses cited in this
section.

Parents must be willing to fight for their child,

Beuf emphasized, "and why they don't is sometimes a

mystery" .

Page-II

Speech

Speech is a mirror of the soul; as a man speaks, so is he.

Publilius Syrus, circa 42 B.C.

Speech is a concern that separates cleft palate from

some other craniofacial disorders.

The psychological

implications of speech present challenges to the afflicted

individual from infancy through adulthood.
Cleft palate children are at risk for language
development problems.

A screening device to address this

issue was the subject of a recent study.

The "Parent

Questionnaire for Screening Early Language Development in

Children with Cleft Palate" is the title of the paper.
Thirty subjects, 16 to 30 months of age received the
MacArthur Communicative Development Inventory: Toddler
(CDI:Toddler).

A control group was also tested.

groups received a speech language screening.

Both

Results

indicated that the CDI:Toddler was a valid screener of

language development.
The cleft group demonstrated evidence of delays in
expressive language development.

The cleft group had a mean

vocabulary of 177 words, compared with 288 words for the

control group.
sentences.

The cleft group used shorter, less complex

Intelligibility was poorer in the cleft group.

Within the cleft group, hypernasality ratings of moderate

and severe were associated with expressive language delays.

Page-12

Adult cleft palate populations are also at risk for

impaired speech concerns, when related to employment, as
demonstrated by two studies.

"From a psychological

standpoint Neiman and Duncan emphasized the importance of

speech.

This study revealed that speech was the single

factor that adversely affected the selection of prestigious

jobs even in the presence of a facial disfigurement.

It

would appear that speech should be given top priority."

(Lehman, Jr., MD, 1993)
I spoke with Dr. Lehman about this study, where photos
of persons with both unilateral and bilateral cleft lip and
palate were shown to a personnel manager.

Also presented

were tape recorded voices, both normal and hypernasal

speech.

The hypernasal speech was much less likely to be

viewed as having the communication skills needed in the

marketplace.
Another study was conducted by Dr. Jane Scheuerle at
the Tampa Bay Craniofacial Center.

In this test adult cleft

palate subjects voices were tape recorded, both preoperative

and postoperative.

The recorded voices were presented to a

panel of three business persons for evaluation as employees.

The results favored the postoperative voices unanimously.
Adult speech issues were also noted at the First
International Symposium for Long Term Treatment in Cleft Lip
and Palate at the University of Bern, Switzerland. "When an
adult does not speak correctly, those around him notice it
immediately, and speculate whether or not the affected
person is of normal intelligence.

Page-13

For this reason, we feel

that correct speech has many important consequences." (J.

Weissen, 1979)

"From the beginning our team considered

speech evaluation and speech therapy as most important,

because receptive speech, i.e. that which one hears, is
dependent on the entire environment (i.e. 360 degrees) as
opposed to the operative cosmetic result which is only
visual, i.e. maximal field of 180 degrees." (Weissen

& M. Bettex, 1979)

Goffman's view of craniofacial handicapping conditions
expressed the subject especially well.

"The closer the

defect is to the communication equipment upon which the

listener must focus his attention, the smaller the defect
needs to be to throw the listener off balance.

These

defects tend to shut off the afflicted individual from the

stream of daily contacts, transforming him into a faulty
interactant, either in his eyes or in the eyes of others".
Sigmund Freud was an individual who suffered acquired
speech impairment.
for palatal cancer.

In April, 1923, Freud underwent surgery

More operations followed in the fall

and Freud was compelled to wear a prosthesis.

Page-14

He had

Bibliography
1.

Robert W. Blakeley, Ph.D., Professor of Speech

Pathology, Director, Craniofacial Disorders Program,
Oregon Health Sciences University, CDRC, Portland, OR
Personal communication and photographs.

2.

The Cleft Palate-Craniofacial Journal (CPJ),

January 1995, Volume 32, number I, American Cleft
Palate-Craniofacial Association (ACPA).

"The Role of

Maternal Factors in the Adaptation of Children with

Craniofacial Disfigurement" by Leslie Campis, Ph.D.,
David Ray DeMaso, M.D., and Allison White Twente, Ph.D.

3.

CPJ, January 1995, Volume 32, number I, ACPA,

"Parent

Questionnaire for Screening Early Language Development

in Children with Cleft Palate" 1993, Nancy Scherer, Ph.D
and Linda L. D'Antonio, Ph.D.

4.

CPJ, November 1994, Volume 31, Number 6, ACPA,

"Medieval

Example of Cleft Lip and Palate from St. Gregory's

Priory, Canterbury", by Trevor Anderson, M.A.

5.

CPJ, September 1993, Volume 30, Number 5, ACPA,

"Psychological Functioning of Children with
Craniofacial Anomalies and Their Mothers:
Follow-Up from Late Infancy to School Entry" by
Matthew L. Speltz, Ph.D., Kathi Morton, Ph.D.,
Elizabeth W. Goodell, Ph.D., Sterling K. Clarren, M.D.

Page-IS

6.

Dr. Benjamin M. Spock,

"A Better World For Our Children"

National Book Network, 1994

7.

National Foundation For Facial Reconstruction (NFFR),

Conference Proceedings of 11/18/92, "Special Faces:
Understanding Facial Disfigurement."

8.

AboutFace newsletter, May/June 1992, Vol. 6, No.3,

Rita Brzozowski, "A Mother's First Lesson", cover story.

9.

Weissen, J., Speech Therapist, Department of Pediatric

Surgery, Inselspital, CH-3010 Berne.

Proceedings of the

First International Symposium, Long Term Treatment in

Cleft Lip and Palate, August, 1979, University of Bern,
Switzerland.

10

Jim Lehman, Jr., MD, AboutFace Newsletter, March/April,

1993, "Ask a Professional" column and personal
communication.

11

Ningyi Li, MD, DDS, Professor and Chairman, Department

of Stomatology, Qingdao University Medical College and
Hospital, Qingdao, Shandong, The Peoples Republic of
China.

12

Personal communication.

The Complete Guide to Cosmetic Facial Surgery,

John A. McCurdy, Jr., MD FACS, 1981, Frederick Fell
Publishers, Inc.

Page-16

13.

Ann Hill Beuf, "Beauty is the Beast; Appearance

Impaired Children in America", 1990, University of
Pennsylvania Press.

14.

Kathleen Stassen Berger, "The Developing Person Through

the Life Span", third edition, 1994, Worth Publishers

15.

Samual Berkowitz, DDS, MS, FICD,

"The Cleft Palate

Story", 1994, Quintessence Publishing Co., Inc.

16.

The New York Times, Thursday, October 1, 1992, "Parent

& Child" by Lawrence Kutner.

17.

Frances Cooke Macgregor, M.A., Social and Psychological

Implications of Dento-Facial Disfigurement, 1969

18.

The Providence Sunday Journal, October 7, 1990, by

Rosemary Jones of the Allentown Morning Call.

19.

Thurston County Works in Progess, November 1994,

Legislative Report Card, Disability bill

20.

Cleft Palate and Cleft Lip: A Team Approach to Clinical

Management and Rehabilitation of the Patient. 1979,
W.B. Saunders Company

21.

Sigmund Freud, Introductory Lectures on Psycho-Analysis

Page-17

1966, W.W. Norton & Company, Inc., Peter Gay, intro.

22.

Dr. Jane Scheuerle, Co-Director, Tampa Bay Craniofacial

Center, Tampa, Florida, personal communication 1993.

23.

Goffman, E., Alienation from interaction,

Relations,

1957.

Page-18

~aA

LIFESPAN HUMAN DEVELOPMENT

Jerry Shulenbarger, Faculty
Winter Quarter, 1995
Research paper topic:

What are some psychosocial implications of congenital

craniofacial anomalies? What factors contribute to the
current situation? A brief historical, comparative survey
of pertinent science and noted thinkers.

At this point I am submitting my topic as outlined

above, as opposed to a diagram, because I'm not exactly sure
where the research will take me.
I have ordered some
excellent books on the subject of craniofacial anomalies and
need to read them.
I will also reference several current
mainstream publications as part of my project. My research
will also include input from health care professionals in
the Pield and their research.

Submitted by:

Neil J. Gillespie
866-7400

\,

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P4//lte..- C;"/I#iOMU/1 / ")'dvfULv9/ -.rl1tV l.lr'J'7

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The Role of Maternal Factors in the Adaptation of Children

with Craniofacial Disfigurement
LESLIE BIRON CAMPIS, PH.D.
DAVID RAY DEMASO,

'A.D.

ALLISON WHITE TWENTE, PH.D.

__This study hypothesized that maternal adjustment, perceptions, and social

. support would better predict child adaptation to craniofacial disfigurement than
_ medical severity. Mothers of 77 children (ages 6-12) completed the Child Behav
ior Checklist, Beck Depression Inventory, Spielberger Trait Anxiety Scale, Social
Support Questionnaire Revised, and Parenting Stress Index. Medical severity
was assessed by the number of operations (craniofacial and other), comorbid
medical conditions, and the Hay Attractiveness Scale. The children and moth
ers in our sample resembled a normal population in terms of their psychologi
cal functioning and quality of the mother-child relationships. Maternal adjustment
and maternal perceptions of the mother-child relationship were more Dotent
predictors of children's emotional adjustment than either medical severity or mater
( nal social support.

KEY WORDS: adaptation, child adjustment, craniofacial disfigurement,

maternal adjustment, medical severity, mother-child
relationship, social support

Craniofacial reconstructive surgery has progressed dra

matically in the last several decades. New surgical tech
nology has given children with craniofacial anomalies
significantly improved appearances and social acceptance
(Murray et aI., 1979). Along with these advances, inter
est in examining the emotional adjustment of children
with craniofacial abnormalities has generated increased
research. To date, the findings of these studies have been
highly variable.
A number of studies have reported that children with
craniofacial disfigurement have difficulties in psycho
logical adjustment, which include a diminished self-con
cept (Arndt et aI., 1986; Kapp-Simon, 1986: Pillemer and
Cook, 1989), lowered school achievement (Brantley and
Clifford, 1979a; Kommers and Sullivan, 1979), marked
,social inhibition (Kapp-Simon, 1986; Pertschuk and
Whitaker, 1988; Pillemer and Cook, 1989), and greater
dependence on adults (Pillemer and Cook, 1989).. ~
trasL other researchers found these children to have psy
chosocial adjustment comparable to that of nonnal children_
(Richman, 1983; Arndt et aI., 1987). Postoperative mea
sures revealed improvement in children's self-concept,
adaptive behavior, and school functioning.

The variability in children's adjustment as described in

these studies may in part be accoun!ed for by the hetero:
geneity in diagnosis, age, methodology, and outcome mea
~ However, children with craniofacial conditions do
appear to have the potential for healthy adjustment.
Researchers have identified protective factors in other
vulnerable populations which help children cope with
challenging life events (Garmezy, 1981, 1985; Beardslee,
1989; DeMaso et aI., 1991). The protective factors which
may ameliorate the negative aspects of living with facial
disfigurement have not been well defined (Bennett &
Stanton, 1993).
Maternal emotional adjustment may be an influential
determinant of the emotional adaptation of children with
craniofacial abnormalities. The substantial emotional
impact on parents when they learn of their child's mal
formation has been documented in the literature. Brant
ley and Clifford (1979b) found that mothers of children
_with cleft lip and/or palate reported significantly greater
negative recollections of the postnatal period than moth
, ers of normal children. Similarly, Speltz et al. (1990)
reported that mothers of children with facial abnormali
ties experienced significantly greater stress, felt less com
petent, and experienced more marital conflict than a control
group. In contrast, Palkes et ai. (1986) found that children
with craniofacial disfigurement did not have a negative
impact on parent's adjustment or a family's structure.
The interaction between mother and child is another criti
cal factor in detennining the psychological adjustment of
children (Rutter, 1986; Speltz et aI., 1993). Mothers' per
ceptions regarding their parenting skills and interactions with
their children may facilitate or hinder a child's adjustment

Dr. Campis is Instructor in Psychology, Dr. DeMaso is Assistant Profes

sor of Psychiatry and Dr. Twente is Instructor in Psychology, Department
of Psychiatry at Harvard Medical School and Children's Hospital, Boston,
Massachusetts.
This study was funded in part by a research grant from the Foundation for
Faces of Children.
Submitted October 1993; Accepted August 1994.
Reprint requests: Dr. Leslie Biron Campis, Department of Psychiatry,
Children's Hospital, 300 Longwood Avenue, Boston, MA 02115.

55

"

56

Cleft Palate-Craniofacial Journal, January 1995, Vol. 32 No. 1

(Holroyd and Guthie, 1986; OeMaso et aI., 1991). There has

been some examination of mothers' feelings and perceptions
regarding their interactions with their children with cranio
facial conditions (Field and Vaga-Lahr, 1984; Palkes et aI.,
1986; Barden et aI., 1989; Speltz et aI., 1990). Field and
Vega-Lahr (1984) found that these mothers were less active
in their interactions and their infants made less eye contact
than nonnal children. Consequently, their interactions were
getennined to be significantly different from those of nonnal
infants and mothers. B~den et at (1989) found that the moth
ers of children with craniofacial malformations reported more
personal and general life satisfaction than mothers of a healthy
control group. However, behavioral obselVations of the mother
infant interactions demonstrated less nurturant relationships.
In contrast, Speltz et aI. (1990) found no qualitative differ
ences in the interactions of children with craniofacial condi
tions (ages 1-3 years) and their mothers when compared to
a normal sample. The two groups of mothers were observed
to be equally responsive, critical, and instructive to their chil
dren. Their children were also equally responsive and active.
Similarly, Palkes et aI. (1986) described parents as no less
accepting of their facially disfigured child or their parenting
responsibilities.
The extent and quality of a mother's social support net
work has been identified as a mediatin~ variable that
buffers the stress of having a child with a physical hand
icap (Barakat and Linney, 1992). Researchers have found
greater social support to correlate with both better parent
(Jessop et aI., 1988; Kronenberger and Thompson, 1992)
and child adjustment (Barakat and Linney, 1992). This vari
able is particularly important to study in children with
craniofacial anomalies as this parent group appears to be
at greater risk for limited social support. Benson et aI.
(1991) and Speltz et aI. (1993) found that parents of chil
"dren with visible facial deformities reported less social sup
......12.2IL Parents in the Benson et al. study were also less
satisfied with the quality of their social support. In con
,trast, Krueckeberg and Kapp-Simon (1993) found no dif
ferences in the social support networks of parents of
children with craniofacial conditions and a control group.
These studies assessed social support of parents whose chil
dren ranged in age from preschool to 7 years. Speltz et
ai. (1993) hypothesized that social support decreases over
time because of the negative effect of greater social expo
sure. It is important to study this variable in a school age
population.
It has been assumed that children with severe facial dis
figurement are at greater risk for disabling psychopath
ology. However, Macgregor (1979) disputes the validity
of this assumption. The severity of medical impairment
has not proven to be a significant contributor to the
emotional adjustment of children with other physical ill
nesses (Stein and Jessop, 1984; Mullins et al., 1991).
Researchers who have investigated medical severity or
its occurrence have found maternal adjustment (Walker et
aI., 1989), social support (Barakat and Linney, 1992), and

maternal perceptions (OeMaso et aI., 1991) to. be more

strongly associated with better child adjustment. Kruecke
berg and Kapp-Simon (1993) noted the need for more
studies to clarify whether severity of a craniofacial prob
lem or the mere presence of a problem is a crucial factor
in these families.
Maternal emotional adjustment, relationship with their
children, and social support along with medical severity of
a craniofacial condition have been identified as potential
influential factors in the adaptation of children with cran
iofacial conditions. This study uniquely examines the rela
tive contributions of all these variables to child adjustment
in a school age sample of these children. The maternal vari
ables were hypothesized to be significantly more predictive
of child adjustment than measures of medical severity.
METHODS

Subjects
The study was conducted in three outpatient settings
at Children's Hospital: (1) Craniofacial Centre Clinic,
(2) Cleft Lip and Palate Clinic, and (3) Outpatient Plas
tic Surgery Clinic. The subjects were 77 mothers whose
children (ages from 6 through 12 years) were diagnosed
with an observable craniofacial anomaly. The children
(44 boys and 33 girls) had a mean age of 8.1 years (SO
= 2.0). Table 1 lists additional sample characteristics.
Mothers of children in a self-contained special needs
classroom were excluded from the study. This study sample
was part of a larger sample of 100 mothers and children
between the ages of 6 and 17 years. In this larger study,

TABLE 1 Sample Characteristics (0=77)

Characteristic
Ethnic Group
White
Hispanic
Black
Other
Marital Status
Married
Divorced
Separated
Single
SES*
Major Business/Professional
Medium Businessrrechnical
Skilled Craft/Clerical
Semi-skilled
Unskilled
Craniofacial Diagnosis
Cleft lip and/or palate
Facial microsomia
Unilat. coronal synostosis
Vascular anomal ies
Syndromic craniosynostosis
Frontonasal dysplasia
Acquired facial deformity
*Dala nor availahle on four subjecrs,

% ojSample

67
4
3
3

87
5
4
4

56
15
3
3

73
19
4
4

21
23
18
6
5

27
30
23
8
7

33
18
11
6
4
4

43
23
15
8
5
5

Campis et al.. MATERNAL FACTORS IN DISFIGUREMENT

105 mothers were approached consecutively with five declin

ing to participate in the study.
Prior to their clinic appointment, potential participants
were mailed a letter informing them of the study's purpose.
The research assistant invited mothers to participate in the
study while they waited for their child's appointment.
Informed consent was obtained from all mothers, who then
completed the questionnaires and received five dollars for
~heir participation.

Dependent Variable Measure

Child Adjustment Measure
The Child Behavior Checklist (CBCL) was completed
by each mother (Achenbach and Edelbrock, 1983). The
behavior problems measure of the CBCL was used in this
analysis. This measure consists of 118 items which assess
internalizing and externalizing behavior problems; an
overall T score of psychological adjustment is calculated
from these subscales. Achenbach and Edelbrock (1983)
reported high test-retest reliability and good discriminant
validity.

Predictor Variable Measures

Demographic Variables
The following demographic information was collected:
child's age, sex, and race; parent's occupation and level of
education (Hollingshead, 1975); and marital status.

Maternal Adjustment
The Beck Depression Inventory (BDI) is a self-report mea
s~re of depression (Beck & Steer, 1987). The BDI has 21
"syn1ptom-attitude categories" which represent characteris
tic manifestations of depression. It has clinically validated
severity cutoff scores and extensive data regarding its accept
able psychometric properties (Derogatis, 1982).
. The Spielberger Trait Anxiety Scale (STAS) is a self-report
symptom mood inventory (Spielberger et aI., 1983). The
STAS, which contains 20 statements concerning how an indi
vidual feels, is designed to provide a measure of "an endur
ing personality characteristic," as opposed to a transient
emotional experience. This scale has good internal stability
and construct validity (Derogatis, 1982).

Maternal Perceptions
The Parenting Stress Index (PSI) identifies parent-child sys
tems under excessive stress and at risk for the development
of dysfunctional parenting behaviors or child behavior prob
lems (Abidin, 1986). This 126-iten1 measure is divided into
Child and Parent domain subscales. The Child domain sub-

57

scale assesses child temperament and the extent to which

these child characteristics are stressful to the parent. High
scores are associated with child qualities that interfere with
parenting. The Parent domain subscale evaluates parents'
personal characteristics and social support system as they
correspond to the demands of parenting. High scores indicate
that the parent characteristics are a potential source of dys
function in the mother-child relationship.
Although each mother completed the entire PSI, four of the
six Child domain subscales (Adaptability, Demandingness,
Mood, and Distractibility) were deleted because of their sub
stantial overlap with CBCL items. The remaining subscales
of Child Acceptability and Child Reinforces Mother were
used as a more accurate measure of mother-child interaction
(DeMaso et aI., 1991). The Parent domain subscale was left
unchanged. The PSI has a reliability coefficient of .95 for the
total stress score.

Maternal Social Support

The Social Support Questionnaire Revised (SSQ) is a mea
sure of an adult's perceived level of social support available
from family and friends (Sarason et aI., 1987). The SSQ mea
sures the extent of the social network as well as the individ
ual's degree of satisfaction with their social support. The
questionnaire items posit different situations and the respon
dent lists supportive persons (up to nine people), character
izes their relationship with supportive persons (whether a
family member or friend), and rates their degree of satisfac
tion with the support provided. Two scale scores are derived
from the average number of persons listed (the number score)
and the average satisfaction rating (the satisfaction score).
Acceptable reliability coefficients for the total scale have
been reported at or above .75.

Medical Severity Measures

Medical data were collected on all children from medical
chart review. The craniofacial diagnosis was also recorded.
Information was obtained regarding: (1) number of cranio
facial operations, (2) number of noncraniofacial operations,
and (3) comorbid medical conditions. Comorbid medical con
ditions were defined as other problems requiring ongoing
monitoring or medication. They were coded none, minor
(e.g., otitis media), or major (e.g., seizures).
The Hay Attractiveness Scale (HAY) was used to provide
an objective rating of physical appearance (Hay and Heather,
1973). The scale has nine points ranging from perfect features
(1) to very marked imperfection (9). Each child was assigned
an appearance rating by the research assistant at their hospi
tal visit. Interrater consistency was also assessed. Another
researcher familiar with the craniofacial population provided
appearance ratings for 25 randomly selected particip~nt.s.
Comparison of the ratings revealed an 85% agreement WIthIn
one point on the scale.

58

Cleft Palate-Craniofacial Journal, January 1995, Vol. 32 No. 1

TABLE 2

Means and Standard Deviations

Measure

Mean

Maternal Adjustment
BDI
STAS
Maternal Perceptions
PSI Child Domin
PSI Parent Domain
Maternal Social Support
SSQ Family Support t
SSQ Friend Support t
SSQ Satisfaction
Medical Severity
Total Operations
Craniofacial Operations
Comorbid Medical Problem
HAY
Child Adjustment
CBCL

5.04
36.45

SD

5.00
7.88

24.30
151.56

6.40
39.82

2.59
1.18
5.21

1.53
1.00
1.09

3.45
2.60
1.71
3.75

2.77
2.37
0.69
1.82

55.84

11.00

*BDI = Beck Depression Inventory: STAS = Spielberger Trait Anxiety Scale; PSI = Parenting
Stress Index: SSQ = Social Suppon Questionnaire - Revised; HAY = Hay Attractiveness Scale:
CBCL =Child Behavior Checklist.
t p < .01.

RESULTS

Descriptive Data
Nine measures were used in these analyses: BDI, STAS, three
subscales of the SSQ, child and parent domains of the PSI,
HAY, and the behavior problems measure of the CBCL. Oper
ations and comorbid medical problems were additional mea
sures used to assess medical severity. Means and standard
deviations are reported in Table 2.
The sample mean scores on the BDI, STAS, PSI, and CBCL
were all within the normal range. When the mean scores of
the SSQ were compared with the nonnative SSQ data, this
sample reported significantly more Family support and less
Friend support (p < .01). This sample's overall Satisfaction
rating was comparable to that of the normative group.
Intercorrelations between Maternal Factors
Intercorrelations were calculated to measure associations
between maternal adjustment and maternal perceptions. Given
the large number of correlations in this study, the signifi
cance level was set at the more stringent .01 level for this and
subsequent calculations. The maternal adjustment and per
ception variables were only minimally correlated (Table 3).
Both Parent and Child domains of the PSI were significantly
linked to maternal reports of anxiety and depression, such that
mothers who reported more stress also reported increased
levels of anxiety and depression. The social support vari
ables were not related to maternal adjustment or maternal
perception. Global satisfaction with social support was only
significantly related to social support provided by family.

TABLE 3 Intercorrelations among Maternal Adjustment

and Maternal Perception Variables
Maternal
Variables

1.
2.
3.
4.
5.
6.
7.

PSI-C
PSI-P
SSQ-FA
SSQ-FR
SSQ-SA
STAS
BDI

Demographic Variables. Pearson correlation coefficients

were calculated to measure associations between demographic

1
PSI-C

2
PS!-P

.58'
-.27
-.11
-.23
.312 t

-.05
-.19
-.15
.30t

.44 t

.3~

Adjustment

3
SSQFA

SSQFR

5
SSQSA

-.05
.34 t
-.01
-.28

.26
-.14
-.14

-.10
-.10

6
STAS

7
BD!

.6~

*PSI = Parenting Stress Index. Child Domain (PSI-C) and Parent Domain (PSI-P):
SSQ =Social Suppon Questionnaire - Revised Family (SSQ-FA) Friend (SSQ-FR).
and Global Satisfaction (SSQSA); STAS =Spielberger Trait Anxiety Scale;
BOI = Beck Depression Inventory.
'p < .01.
.p< .001

variables and the following measures: BDI, STAS, SSQ, and

PSI. There was a significant negative correlation (p < .001)
between SES and amount of social support from friends.
Mothers in lower SES families reported less social support
from friends. No other correlations were significant.
Medical Severity Measures. Since the medical severity
measures (operations, comorbid medical conditions, and
HAY) were skewed by some extreme values, Speannan rank
correlation coefficients were calculated to measure associa
tions between medical severity variables and the measures of
maternal adjustment and perception. No statistically signifi
cant correlations were found.
Predictors of Child Adjustment

Demographic Variables. Pearson correlation coefficients

were computed to detennine the relationship between the
demographic variables and child adjustment..:....l~~'one of the
demographic variables were significantly correlated with
CBCL scores. Analysis of variance models using categorized
demographic variables to predict CBCL scores were con
structed and showed no significant effects for these variables.
Maternal Adjustment and Perceptions. Correlations between
the maternal adjustment, maternal perception, and child adjust
ment variables were also completed. Several significant pos
itive correlations were found (Table 4). The STAS, the BDI,
and the PSI (both Child and Parent domains), were all highly
correlated with the CBCL. Mothers who reported symptoms
of anxiety and depression described their children as more
TABLE 4 Pearson Correlation Coefficients for Child Adjustment
and Maternal Adjustment, Perception, and Social Support Variables
Child
AdjuSTment
CBCL

Influences on Maternal Factors

Perception

STAS

BDI

SSQFA

SSQFR

SSQSA

-.17

-.14

-.26

PS!-C

PSI-P

*STAS = Spielberger Trait Anxiet)' Scale: BDI = Beck Depression Inventory: SSQ =Social Sup
pon QUt'stionnaire - Revised Family (SSQ-FA). Fncnd(SSQ-FR). and Global Satisfaction (SSQ
SA): PSI = Parenting Suess Index. Child Domain (PSI-C) and Parent Domain (PSI-P): CBCL =
Child Behavior Checklts!.
'p < .001

Campis et al.. MATERNAL FACTORS IN DISFIGUREMENT

maladjusted. In addition, the relationship between the PSI and

the CBCL indicates that stress within the mother-child rela
tionship was associated with child maladjustment.
Medical Severity Measures. Speannan rank correlation coef
ficients showed no significant correlations between the med
ical severity measures and child adjustment. Additionally,
analysis of variance models using categorized medical sever
ity variables were tested. A significant effect was found for one
medical severity variable, comorbid medical conditions (F =4.39,
p < .016). A series of planned comparisons revealed that the group
. with the most severe comorbid medical conditions had the hi~h
est CBCL scores. This group had more adjustment problems
than did children with mild or moderate comorbid medical con
ditions. The groups with mild and moderate comorbid medical
problems did not differ statistically.
Differential Contributors to Child Adjustment
The relative importance of specific measures in predicting
child adjustment was detennined next. First, the large set of
predictor variables was reduced by creating a single sum
mary score (accomplished by summing standardized scores
of the individual variables) to represent each of the four vari
able domains: (a) maternal adjustment, STAS and BDI; (b)
maternal perception, PSI Child and Parent domains; (c) mater
nal social support, SSQ family, friend, and satisfaction; (d)
medical severity, operations, comorbid medical conditions,
HAY appearance rating.
A series of iterative multiple-regression analyses (Cohen and
Cohen, 1983) were then conducted using the set of four key
variables. Iterative analyses were completed so that each of
the four variables were entered last into the regression equa
tion. This approach provided an examination of the unique
contribution of each specific variable above and beyond the
variance explained by the other summary variables. The strat
egy also allowed for a test of the central hypothesis that
maternal adjustment and maternal perceptions would be more
predictive of child adjustment than medical severity.
The total variance in child adjustment explained by the set
of four summary variables was 38% (Table 5). As hypothe
sized, both maternal adjustment and maternal perceptions
made unique contributions to the explanation of child adjust
ment. Neither medical severity nor maternal social support

TABLE 5 Summary of Multiple Regression Analyses Predicting

Child Adjustment

Predictor
Variables
Maternal Perception
Maternal Adjustment
Medical Severity
Maternal Social Support

Correlation
with DV

Beta

.53'
.4 7'
.13
-.27

.35
.34
.18

*TotaJ variance accounted for by model. R2 = .38;

tCalculated as incremental change in multiple R;

'P< .001;
'Significant incremental change at p < .05 level.

-.06

Uniqul'
Contribution t
.087
.086'
.030
.003

59

contributed significantly above and beyond all other vari

ables to the total model.
DISCUSSION

The findings of this study support the psychological resiliency

and adaptive potential of children with craniofacial conditions
and their mothers. Mothers' emotional adjustment and per
ceptions of their relationship with their children were more
potent predictors of children's emotional adjustment than the
severity of the craniofacial anomaly. This finding corresponds
to other studies in which illness severity was less important
to a child's adjustment than maternal functioning (Spaulding
and Morgan, 1986; Walker et aI., 1989). Furthermore, the
children and mothers in our sample resembled a normal pop
ulation in tenns of their psychological functioning and qual
ity of the mother-child relationships.
While there were no significant differences in maternal
adjustment between these mothers and a normal population,
this finding must be interpreted cautiously. This sample had
",a slightly higher means SES than the normative samples of
_the predictor variable measures. Mothers who did report clin
ically significant levels of depression and anxiety also rated
their children as having more behavior problems. This find
ing is consistent with that of Barakat and Linney (1992) who
found that maternal psychological functioning was related to
child adjustment. An impaired mother-child relationship,
including under involvement or overprotection, has been con
ceptualized as an important etiologic factor in childhood
depression (Weller and Weller, 1991). The presence of mater
nal maladjustment in a family with a chronic medical illness
may place a child at greater risk for the development of emo
tional difficulties.
The Parenting Stress Index (PSI) was found to have a strong
relationship to children's emotional adjustment. Within the
Child domain on the PSI, mothers reported their interactions
with their children to be reinforcing and felt acceptance of their
child. As measured by the Parent domain, the mothers of the
well-adjusted children described greater emotional closeness
and empathy in their relationships, despite the degree of med
ical severity. Speltz et a1. (1993) hypothesized that child adjust
ment in this population can be predicted from observations of
parent-child interactions. These researchers discovered that
mother's child-directed orientation in a play task was predic
tive of lower CBCL scores at 4-year follow-up.
Contrary to expectations, maternal social support was not
highly associated with child adjustment. Other researchers
(Speechley and Noh, 1992) have found the extent of social
support to be inversely related to psychological distress for
mothers. The population in this study appears to be different
in this regard. The mothers had small social networks which
were primarily comprised of family members. Benson et a1.
( 1991) and Speltz et a1. (1993) also found that parents of
children with craniofacial conditions reported decreased social
support systems. Despite this, mothers appeared to be con
tent with the extent and composition of their social network.

60

Cleft Palate-Craniofacial Journal, January 1995, Vol. 32 No. 1

Such insular social networks may be related to the unique

social stresses with which this population must contend. Par
ents of children with craniofacial disfigurement !pay be less
emotionally reliant on social support because soci,al rejection
of their child is greater in the elementary school age years.
This may also account for mothers' tendency to rely on rel
atives for social support, instead of friends. Limiting social
contact outside the family may serve a protective function in
reducing the child and parent's sense of stigmatization. How
ever, the dependence on family members may also be stress
ful, in that these relationships are potentially more conflict
ridden and less amenable to change (Coyne and Delongis,
1986; Sarason et al., 1990). Before conclusions can be drawn
about the qualitative differences in this group's social sup
port system replication of this finding with a similar age
group is necessary.
The de~ree of facial disfj2urement had 00 relationship
. to child or maternal psychological functioning or to mater
nal perceptions. However, having a comorbid severe med
. ical condition was related to greater behavior problems in
_children. The impact of additional illnesses may multiply
the stress to children and their family systems.
The rna' or limitation of this stud is that the evaluation
of child adjustment relied on parent report. There were no
other sources of information of child behavior to corrob
orate the mother's view. In addition, emotional malad
justment in mothers is related to negative maternal reports
of children's behavior (Brody and Forehand, 1986; Fried
lander et al., 1986). Despite this finding, these researchers
found that depressed mothers were still able to differenti
ate children with and without emotional problems, sup
porting the criterion validity of the CBCL. However, causal
relations between maternal variables and child adjustment
can not be derived from the present study given its method
ological limitations. Future studies should use multiple
informants in a longitudinal assessment of the children
with craniofacial conditions.
Despite the presence of a craniofacial malformation, chil
dren have the capacity for healthy psychological adjust
ment in the school age years. This study supports the
. important association between the mother-child relation
ship and children's psychological adaptation. Given the
small nUITlber of minority families and the predominance
of upper SES families in this study 2eneraJjzatioD Of these
findings to a more heterogeneous population must be done
with caution. The findings are strengthened by the sample
size and the inclusion of a limited age range to control for
the effects of developmental differences. It is important that
future studies assess whether the mother-child relation
ship has a direct and moderating effect on the psycholog
ical and social stress of facial disfigurement.

Acknowledgment. The authors would like to thank John B. Mulliken.

M.D. and the staff of the Craniofacial Centre, Children's Hospital for their

support of this project. The contributions of Sarah Bynum and Melissa

Brodie are appreciated.

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----I

/793

l/oL. 30 -#S-

Psychological Functioning of Chil~ren with Craniofacial Anomalies and

Their Mothers: Follow-Up from Late Infancy to School Entry
MATTHEW L. SPELTZ, PH.D.
KATHI MORTON, PH.D.
ELIZABETH W. GOODELL, PH.D.
STERLING K. CLARREN, M.D.

Twenty-three mothers and their 5- to 7-year-old children with craniofacial

anomalies (CFA) who were assessed during the child's infancy were followed.
Three types of CFA were Included: cleft lip and palate (CLP), isolated cleft
palate (CP). and sagittal synostosis. Measures of child status focused on
behaylor-problem frequency and self-concept. Moth9rs completed self-re
port measures of emotional well-being, marital satisfaction, and social sup
port. Results Indicated that (1) a sizable minority (18%) of the children with
CFA had clinically significant behavior-problem scores shown in concordant
repgrts by parent and teacher of behavior problems; (2) individual differences
in child func'lioning within the CFA group were predicted by observational
measures of earlier mother-infant interaction during play and teaching situ
,ations; (3) mothers of children with CLP reported less fayorable social
support than mothers of children wltb Cp gf sagittal synostosis
KEY WORDS:

craniofacial anomalies, infancy and early childhood,

psychological functioning

In a previous study (Speltz et aI., 1990) the maternal

interactions and parenting characteristics affecting infants
and toddlers with craniofacial anomalies (CFA) were investigated. The present paper will describe a follow-up of
the same children at ages 5 to 7 years. The objectives of
the follow-up were to determine the psychological status
of the children and their mothers at a later age and to
identify measures from infancy associated with later variation among the children.
Although small sample size and a. high rate of control. group attrition were factors limiting the methods of this
follow-up, the data were collected for several reasons.
First,previous longitudinal research on the psychological
development of CFA children and adolescents is almost
nonexistent. There has been only one previous study of a
longitudinal nature to our knowledge (Allen et aI., 1990)
and that contained a heterogeneous disability group only
partially comprised of children with CFA. Several investigators in this area have indicated the need for longitudinal
data (e.g., Kapp-Simon et aI., 1992). Second, the potential

pro Speltz, Dr. Morton, Dr. Goodell. and Dr. Clarren are all affiliated
l\'ith the University of Washington School of Medicine, Seattle,
Washington. .
f h
d
d
h 1991 B
. I
Sorne portions 0 t IS stu y were presente at t e
lennla
Meeting of the Society for Research in Child Development, Seattle,
Washington.
This research was supported by a grant from the National Institute of
Child H.ealth and Human Development (HD25987).
Submitted November 1992; Accepted May 1993.
Reprint requests: Matthew L. Speltz, Mailstop CL-08, University of
Washington, Seattle, WA 98195; mspeltz@u.washington.edu.

predictor variables examined in our study were based on

observational measur s of moth r-inf nt
ing interactions. Such measures have been infreQuently
used in previous CFA psycholo~ical research. despite their
widespread application in other areas of pediatric and dey"e]opmental psycholoiY (e.g., Barnard et aI., 1989)..IhiI:d.
the time period encompassed by the follow-up (infancy to
the child's entO' into irade schoo]) is one jn whjch re]a
tively little is known about the development of children
with CFA, despite the intensity of the medical care and
family emotional factors operative durini this period
(e.g., parental adjustment to the anomaly, surgeries, feed
ing and speech difficulties, early peer encounters).
The original sample studied by Speltz et a1. (1990) com
prised infants and toddlers (ages 12 to 36 months), with
three types of repaired anomalies including cleft lip
and palate (CLP), isolated cleft palate (CP), and sagittal
synostosis (SS), and a matched control group. The moth
ers of children with CFA (Le.! CLP/CP/SS combined)
~ reported higher levels of emotional distress and greater
-7\' marital conflict than controls, on standardized question- "
naires. There were no differences on these measures among
the dmerent CFA diagnostic groups. The videotaped ob-

servational measures during play and teaching situations

f ocuse d on the moth

d b
eer' s f requency
0 f c hld
I -dIrecte
..
...
. ,
.
.

havlors (I.e., faCIlItatIng the chIld s control and dIrectIon

of the interaction) and her use of specific teaching skills

(e.g., positioning the child to facilitate interaction with

materials, and clear instructions and feedback). These in-

. . .

teractIonal charactenstIcs were of Interest because of pre-

vious research showing that the mothers of infants with

482

Speltz et aI., PSYCHOLOGICAL FOLLOW-UP 483

other types of physical impainnents (e.g., prematurity) are

more controlling and less child-directed than controls,
presumably as a consequence of their efforts to stimulate
a relatively unresponsive baby (e.g., Goldberg et aI., 1980).
Furthermore, in samples of preschool children without
.~
physical impairment, mothers of problem-behavior chil
,...'" .dren have been observed to show more controlling and '
critical styles of interaction during play than the mothers
of their well-adjusted peers (e.g., Argona and Eyberg,
1981; Robinson and Eyberg, 1981; Webster-Stratton,
1985). Thus the parent's ability to encourage and facilitate
the child's control and autonomy during early play and
teaching situations may be related to the child's later in
terpersonal behavior. The relevance of this hypothesis to
the CFA population is uncertain, as Speltz et aI. (1990)
found no differences on any of these dimensions of inter
action between the CFA and control groups; nor were
there differences among the three CFA diagnostic sub
groups in this respect.
The follow-up study involving this sample examined
two domains of psychological outcome in which children
with CFA have shown elevated risk. The first is behavior
problem frequency. Both teachers and parents have re
ported higher levels of externalizing and/or internalizing
behavior problems for children and adolescents with CFA
compared with matched control groups or nonnative sam
ples (Richman, 1976; Harper et aI., 1980; Tobiasen et aI.,
1992). The second domain is related to the child's self
evaluations of various skills and dispositions. Although
the self-perceptions of older children and adolescents with
CFA have not differed substantially from those of peers
without anomalies (Leonard et aI., 1991; Tobiasen et aI.,
1992)"elementary school children with CFA (ages 6 to 9
, years) have been found to endorse less desirable _self
attributes than controls (Kapp-Simon, 1986; Broder and
Strauss, 1989). Thus self-perception would apoear to be
an area of potential risk and vulnerability at least for
younger children with CFA.
The follow-up was designed to address three questions:
(1) What is the relative status of the children with CFA at
school entry, in tenns of behavior problem frequency and
self-perception? (2) Do mother-child interaction measures
taken in late infancy/early toddlerhood predict the later
adjustment of children with CFA, after controlling for
family social-economic status? (3) Within the CFA group,
is visibility of impainnent associated with variations in
child status or maternal self-reports of psychological
status?

earlier study participated in the follow-up (time 2). Of the

total of 55 subjects from time 1, 47 were located before
the follow-up. Of these 47, 7 families containing a child
with CFA and 7 control group families declined to partici
pate in the follow-up; the most common reasons given
were distance and lack of time. Among the 23 children
with CFA participating at time 2, there were seven with
CP, nine with CLP, and seven with SSe Table 1 lists the
demographic characteristics at time 2 of the resulting CFA
and control groups, and the 3 diagnostic subgroups within
the CFA group.

Analyses of Participants Compared with

Nonparticipants in the Follow-Up
Given the relatively high attrition rate of the follow-up
sample, it is important to detennine whether the partici
pating subjects at time 2 were representative of those who
enrolled in the study at time 1. This was examined by
comparing the time 1 characteristics of time 2 participants
and nonparticipants. Within both the CFA and control
groups, participants did not differ significantly from non
participants in marital or socioeconomic (SES) status at
time 1 or in child and maternal age (each p > .20). Gender
distribution was, however, significantly different at time 2
(chi-square = (1) 3.9, P < .05). Whereas the CFA and
control groups at time 1 had 66% and 45% males, respec
tively (a nonsignificant difference), 74% of the participat
ing children with CFA at time 2 were male as opposed to
30% of the control group.
There were no significant differences between time 2
participants and nonparticipants on the major dependent
variables taken at time 1 (Le., mothers' reports of emo
tional distress, social support, and marital satisfaction
and observational measures of mother-infant/toddler
interactions).

Measures
Predictor Variables from Time 1. For reasons noted
earlier, three dimensions of mother-infant/toddler interac
tion observed at time 1 were selected for study as potential
TABLE 1 Means of Subject Characteristics at Time 2
Clinic Subgroups
Clinic Comparison
=23 n = 10

Child age (mo)

METHOD

Subjects
Twenty-three of the original 33 mother-infant pairs with
CFA from the investigation by Speltz et aL (1990) (time
1) and 10 of the original 22 control group dyads from the

Gender (% m)
SES index
Two-parent
families t (%)

76
74
3.9
87

73
30
4.3
100

CP
n=7

CLP
n=9

SS
n=7

76
57
4.5

81
78
3.6
67

70
86
3.8

100

100

Hollingshead four-factor social strata ranging from 1 to S: (1) business and professional
to (S) unskilled labor.
tlncludes unmarried, in-home partnen.

484 Cleft Palate-Craniofacial Journal, Septernber 1993, Vol. 30 No.5

predictors of time 2 child psychological adjustment in the

CFA group: (l)_J)laternal frequencies of child-directed

play interaction (CDP); (2) maternal frequencies of criti

. cal/negative comments during play (CRIT)i and (3).!!l:
ings of maternal teaching behavior skill (TEACH). The
CDP and CRIT scores were the result of a factor analysis
in the Speltz et al. (1990) study of seven behavior codes
taken from the Dyadic Parent-Child Interaction Coding
System (DPICS; Robinson and Eyberg, 1981). The DPICS
was used by trained observers at time 1 who watched
videotapes of parent-child play interaction recorded in a
clinic playroom (for details see Speltz et aI., 1990). The
CDP score represented the sum of four DPICS categories
including reflective and descriptive comments, reflective
questions, and other neutral or positive comments about
the child's play. The CRIT score represented a single
DPICS cate~0O" critical comments The TEACH score
was the total of three parent subscales from the Nursing
Child Assessment Teaching Scale (NCAST; Barnard et aI.,
1989), including Sensitivity to Cues, Social-emotional
Growth Fostering, and Cognitive Growth Fostering. The
score represents 39 NCAST items that describe specific
maternal teaching behaviors, scored for their presence or
absence. Trained observers used the NCAST to code a
5-minute teaching task in which the mother was asked to
teach her child a simple task just beyond the child's cur
rent level of skill. Some of the families with CFA were
unable to participate in the observational procedures at
time 1. Among the 23 children with CFA in the follow-up
study, observational data were available for 19.
Maternal Self-Report Measures at Time 2. One of
the maternal self-report measures given at time 1 was
re-administered at time 2, the General Well-Being Sched
ule (GWBS).. The GWBS measures the emotional well
being of adults in nonpsychiatric samples. Higher scores
on this instrument reflect better emotional health as shown
by reports of fewer day-to-day experiences of anxiousness
and despondency, and fewer occurrences of minor physi
cal symptoms (DuPuy, 1979).
Maternal reports of social support were assessed with the
.SociaJ Network Reciprocity and Dimensionality Assess
ment Tool (SNRDAT). In a structured interview, respon
dents were asked to list social network members and rate
their degree of satisfaction with the support received
from, and provided to each member (Kazak et aI., 1988).
In previous research, test-retest reliabilities for network
size have ranged from .65 to .90 and scores from the
SNRDAT have shown predictable relationships with
measures of stress and daily hassles (Kazak and Parkes,
1987). In our study, a single overall score was developed
by multiplying total network size by total satisfaction rat
ings with a logarithmic transformation of the product (in
order to reduce variance and normalize the distribution of
multiplied scores). The SNRDAT was used instead of the
social support questionnaire given at time 1 (Social Health

Battery) because it places greater emphasis on the respon

dent's perceived quality (versus quantity) of support.
The Dyadic Adjustment Scale (DAS) was used to meas
ure marital satisfaction, as reported by the child's mother.
The DAS is a widely-used, 16-item measure with well-es
tablished reliability and validity that is an expanded and
updated version of the Locke-Wallace Marital Adjustment
Scale used at time 1. Internal consistency is .96 and the
DAS has been shown to discriminate married and divorced
couples, and intact couples seeking marital therapy versus
those reporting satisfying long-term relationships (Spa
nier, 1976).
Child Psychological Adjustment at Time 2. The
Child Behavior Checklist (CBCL: Achenbach, 1991 a)
was used to assess parent-reported child problem-behav
ior frequency. Parents were asked to rate the approximate
frequency of 11 8 child problem behaviors over the pre
cedjn~ 6 months. The CBCL provides age and gender-spe
cific standard and percentile scores for total problems, as
well as internalizing and externalizing scores and subtest
scores for particular kinds of problems (e.g., aggression,
hyperactivity, social withdrawal). The Teacher Report
Form (TRF; Achenbach, 1991 b), which contains items
and instructions that parallel the CBCL, was also given to
the kindergarten or first grade teacher of all children at
time 2 (one teacher did not return the TRF).
Children's self-perceptions were measured with a
method developed by Eder (1990). Children were pre
sented with 55, randomly ordered pairs of opposing
descriptive statements about age-relevant behaviors and
emotions (e.g., "I usually play with friends" versus "I
usually play by myself."). Using puppets and a small
stage, the statements were delivered as if spoken by a pair
of puppets, each describing one of the opposing state
ments. In each paired presentation, the child was asked to
select the puppet that best represented themselves. In a
sample of 180 children aged 3.5 to 7.5 years, Eder (1990)
found this method to yield factor scales with good internal
consistencies (mean alpha coefficients of .75 to .78, de
pending upon age) and to correspond with self-evaluatory
constructs identified in adults (e.g., achievement, affili
ation, rejection). These factor scores were composed of
different items at different ages, making their use in our
sample implausible. Because we did not have a large
enough sample to develop new factors empirically, a total
score was used in this study, with higher scores repre
senting the number of forced-choices endorsing a positive
dispositional concept.

Procedures
All subjects were seen at the Seattle Children's Hospital
, and Medical Center Craniofacial Program. Mothers were
interviewed and completed questionnaires while the chil
dren participated in the self-concept assessment. Two of

Speltz et al., PSYCHOLOGICAL FOLLOW-UP 485

TABLE 2 Intercorrelations among Dependent Measures at Time

2 for the CFA Group

the children with CFA and one child in the control group
declined to participate in the self-concept procedure. The
families were debriefed and parents were later sent an
individualized summary of our assessment.

CBCL

TRF

SelfConcept

GWBS

DAS

CBCL

RESULTS

.53*

TRF

Table 2 shows the intercorrelations among the three

child adjustment measures and three maternal self-report
measures from time 2 for the CFA group. Table 3 lists the
means and standard deviations of the CBCL and TRF
behavior checklist scores by group and gender. All other
time 2 measures for the CFA and control groups are
shown in Table 4. Table 5 contains the means and stand
ard deviations for all measures by CFA diagnostic sub
group (CP, CLP, and SS).

Self-concept

-.28

GWBS

-.32'

.11

DAS

-.28

-.31'

-.13

SNRDAT

-.20

-.04

-.18
.58*

AO

.31'

-.04

.08

.p < .01.
'p < .05.
'p < .10.

Analyses of CBCL externalizing (EXT) and internalizing

(INT) scores showed similar interactions between group
and gender (see Table 3). This interaction was significant
for EXT scores [F( 1,31) = 4.3; P < .05] and marginally
significant for INT scores (p = .06). ANOVAs of the TRF
and child self-concept total scores revealed no significant
interactions or main effects (p > .20).
Maternal Self-Reports of Psychological Status. Uni
variate group by gender ANOVAs were used to compare
the CFA and control group on three maternal self-report
measures (OAS data were available for all but 3 single
mothers without partners). A main effect for group was
found on the GWBS; F(l,32) = 4.3; P < .05. ~others of
she CFA children reported poorer emotional health (Le.,
lower GWBS scores) than mothers in the control group.
There was no effect for gender nor a significant group
by gender interaction on this measure. There were no
significant interactions or main effects for the DAS and
SNROAT (p > .20).

CFA-Control Group Comparisons

Child Adjustment Measures. CBCL and TRF nonna
tive t scores (mean = 50; SO = 10) were used as dependent
variables in the analyses of these data (derived from
nonns provided by Achenbach, 1991 a and Achenbach,
1991b). Analysis of variance (ANOVA) was used to test
group differences and the interaction between group and
gender (because of the small sample size, nonparametric
tests were used to corroborate the ANOVA findings for all
measures; the nonparametric analyses produced identical
results). An ANOVA of CBCL total scores showed a
significant interaction effect: F(l,31) = 5.04; P < .05.
Whereas boys with CFA and control group boys had
equivalent mean CBCL scores,.girls with CFA had higher
. mean scores than girls in the control group; F(l,12) = 9.2;
P < .02. Girls with CFA were also found to have higher
total scores than boys with CFA [F(l,22) = 5.7; p < .03].

TABLE 3 CBCL and TRF Total, Externalizing, and Internalizing Scores by Group and Gender
Control Group

CFA Group
Boys

Girls

Boys

Girls

SD

SD

SD

SD

Total*

51.4

9.2

62.2

lOA

51.3

6.3

43.8

11.1

EXTt

51.5

9.8

60.8

9.0

50.0

8.6

42.8

8.5

INT'

50.1

9.1

59.7

12.4

49.7

1.1

42.3

11.2

Total

47.9

8.7

54.0

12.5

50.7

7.0

47.3

7.6

EXT

48.0

8.5

54.2

10.8

49.3

6.5

47.5

7.1

INT

50.9

9.1

51.2

11.8

55.7

3.0

50.8

6.4 '

CBCL

TRF

*CFA girls> CFA boys; F(1,22) = 5.6; P < .03. CFA girls> control girls; F(1,12) = 9.2; p < .02.

girls> control girls; F(1,12) = 13.5; P < .01.

'CFA girls> control girls; F(l,12) 7.0, P < .03.

t CFA

486 Cleft Palate-Craniofacial Journal, September 1993, Vol. 30 No.5

TABLE 4 Child Self-Concept and Maternal Measures

CFA Group

Control Group

SD

SD

38.9

4.6

41.0

5.5

172.3

23.1

191.8

21.5*

31.2

2.2

33.0

1.3

Variable

interactional variables from time 1 (CDP, CRIT, and

TEACH), to each of three child dependent measures at
time 2 (CBCL, TRF, and total self-concept score), after
controlling for variance associated with family SESe For
each dependent variable SES was entered first, followed
by the stepwise entry of the interactional variables (prob
ability of F to enter was set at .05). These analyses in
volved only the 19 children with CFA in the follow-up
study for whom time 1 observational data were available
(in analyses of the self-concept data there were fewer
,subjects as two of the children with CFA did not partici
pate in this measure).
The results of the regression analyses are shown in Table
6. For the CBCL, the best predictor was maternal child-di
rected play behavior (CDP) which, with SES, accounted
for 36% of the variance in problem behavior scores at
school entry. CDP contributed significant variance to
CBCL scores beyond that associated with SESe The
child's self-concept was best predicted by maternal teach
ing behavior (TEACH), which contributed significantly
after controlling for SESe This variable, along with SES,
accounted for nearly 50% of the variance in self-concept
scores. No independent variables were significantly re
lated to the TRF problem behavior scores.

Child
Self-concept
Mother
GWBS
DAS
SNRDAT

2.4

.24

2.4

.25

p < .05.

Comparisons among the CFA Diagnostic Subgroups

One-way ANOVAs were used to examine differences
among the three diagnostic subgroups (there were too few
subjects in these subgroups to conduct two-way analyses
of group by gender). No significant subgroup differences
were found for any of the child adjustment measures
(p > .20). Maternal reports of social support during the
SRNDAT were found to differ significantly; F(2,20) =
3.6; p < .05. Multiple comparisons (Student-Newman
Keuls) indicated that the CLP mothers reported less social
support/satisfaction than mothers in the other two diag
nostic groups. Analyses of the DAS and GWBS found no
differences among the diagnostic groups (p > .20).

DISCUSSION

Relative Adjustment of Children with CFA

Relative deficits in behavioral adjustment were found
only for girls with CFA as indicated by maternal reports.
Although this interaction between CFA status and gender
may have been influenced by uneven gender distribution
across groups, the use of scores reflecting gender-specific
norms suggests otherwise.. Girls with CFA had mean

Prediction of Time 2 Adjustment from Time 1

Interaction Scores
A combined hierarchical and stepwise multiple-regres
sion procedure was used to assess the contribution of three

TABLE 5 Child and Maternal Measures by CFA Diagnostic Subgroup

CFA Subgroups

SS

CLP

CP

SD

SD

SD

CBCL
Total
EXT
INT

50.3
50.7
49.0

9.1
7.1
9.9

55.7
56.2
53.2

11.6
10.7
11.3

56.1
54.4
55.4

10.6
12.7
11.1

TRF
Total
EXT
INT

50.6
52.5
47.14

8.3
8.7
4.5

49.2
48.8
50.8

12.7
11.5
9.8

48.8
47.5
55.5

9.5
6.8
12.9

Self-concept

39.1

3.6

37.1

4.0

40.8

5.9

176.4
31.9
2.4

25.3
1.8
.21

175.1
30.1
2.2*

20.2
1.7
.27

164.4
31.6
2.5

25.7
2.8
.11

Child

Mother
GWBS
DAS
SNRDAT
ClP < CP and < 55; p < .05.

Speltz et al., PSYCHOLOGICAL FOLLOW-UP 487

TABLE 6 Mother-Infant Interaction Variables Contributing to

the Prediction of Child Outcomes in the CFA Group
Step

R2
Change

Variable

Change

r*

8.9 t

-.11
-.53

Dependent variable: CBCL Total Scores

I

SES
CDP

.01
.36

.35

F(2, 16) =4.6; P < .03; adjusted R 2 =.29

""'if'

Dependent variable: Self-concept

I
2

SES
TEACH

.13
.49

the 95th percentile to be considerably less than 5%, as

parent-teacher agreement with these instruments is rela

tively low (i.e., the average correlation between concurrent

parent and teacher CBCLffRF scores in the nonnative

sample is .34 and .29 for the externalizing and internaliz

ing scales, respectively; McConaughy et al., 1992). Al
though the possibility of sampling error is great in such a

small group of children with CFA" we cannot ignore the

implication that these children may be three or four times ~

more likely than their nonimpaired peers to have clinicall~

significant behavior problems when first entering school.

The estimate of behavior problem prevalence must, how

ever, be regarded as tentative until further examination in

a much larger sample of young children is possible.

.36

9.7 t

.36
-.55

F(2,14) = 6.6; P < .01; adjusted R2 = .41

*Zero order correlation; t p < .01.

Predictive Significance of Mother-Infant Interaction

scores above the 85th percentile for their normative group
t and boys with CFA had mean scores very near their nor
. mative average. This difference is not attributable to the
scores of one or two outlying subjects. Among the six
girls with CFA in this sample, five had CBCL scores
above the 85th percentile.
The gender difference in maternal reports is inconsistent
with findings from other high-risk groups in which boys
are usually more likely than girls to be referred at this age
for behavior problems, especially of the externalizing type
(Greenberg et al., 1993). The fact that teacher reports of
problem behavior did not show significant gender effects
suggests that the gender difference may be associated
uniquely with maternal factors. Perhaps there are gender
linked maternal expectations that influence mothers' per
ceptions of problem behavior (e.g., mothers might have
lower tolerance for difficult behavior in girls with CFA)
or there is an objectively higher level of problem behavior
among girls that is primarily manifested in the context of
the mother-daughter relationship. Further study is needed
to replicate the gender difference found herein with a
larger and more balanced number of girls and boys with
CFA, and with the use of both mother and father reports.
xamination of Individual Subjects. Another per
spective is gained by examining the CBCL and TRF
scores of individual subjects in relation to a clinical crite
rion. With regards to CBCL scores, four of 23 children
with CFA (two CLP and two sagittals, two boys and two
girls) were found to have internalizing and/or externaliz
ing CBCL scores above the 95th percentile in the Achen
bach (1991 a) normative sample. Scores at or above this
oint have been stron 1 associated with clinic-referral
( for psychiatric problems (Achenb~ch and Edel rock,
1981). It is important to note that all four of these children
had Teacher Report Form scores in this range as well.
Thus, about 18% of the children in our CFA sample had
J>oth parent and teacher scores above the 95th percentile.
Among children generally, we would expect the base rate
of concordant parent-teacher CBCLffRF reports above

'*

The regression analyses of the interaction data were

exploratory, limited by a low case-to-variable ratio and

the tendency of stepwise regression to capitalize on

chance relationships (Tabachnick and Fidell, 1983). In the

absence of previous longitudinal findings on which to

formulate hypotheses, the present analyses provide a

much-needed basis for subsequent hierarchical analyses

with new longitudinal samples.

Our results suggest that the mother's child-directed ori

~ntation during play with her infant or toddler may predict .

maternal behavior problem reports up to 4 years later.

Specifically, higher levels of child-directed play skill

were associated with lower subsequent CBCL scores. I~

regression findings also suggest that the child's endorse

ment of positive self-perceptions at age 5 to 7 years may

.be related to the mother's style of teaching during the late

infancy period. Both maternal interaction variables (play
and teaching) added significant variance to the predicted
outcome measures after controlling for socioeconomic
status. This is important because previous research has
found that some measures of mother-infant interaction
correlate with family socioeconomic factors (e.g., mater
nal teaching behavior and parent education; Barnard et al.,
1989).
The negative correlation between maternal teaching

scores and child self-concept indicated that higher self

concept scores were associated with lower levels of active

maternal teaching in our sample. This suggests that the

self-perceptions of young children with CFA may be en

hanced by a parental interaction style which, even during

teaching, places less emphasis on correct performance and

contingent feedback. In other words. mothers who are

. less performance-oriented and more child-directed'may be

more likely to have children in this population who report
positive self-evaluations later on. If these longitudinal
findings pertaining to maternal play and teaching style can
be replicated, early interventions using child-directed in
teraction training for the parent (e.g., Eyberg and Robin
son, 1982) should be considered for some familjes jn

488

Cleft Palate-Craniofacial Journal, September 1993, Vol. 30 No.5

which there is particular concern about the quality of the

parent-child relationship.

Differences Associated with Visibility of Impairment

Mothers in the cleft lip and palate group reported less
social support than those in the "invisible" impairment
groups (isolated cleft palate and sagittal synostosis). The
measure used to assess social support (SNRDAT) re
flected several sources (adult partner, family, commu
nity), but this finding may primarily reflect the mothers'
dissatisfaction with support from intimate relationships,
as over 30% of the mothers in the CLP group were without
parenting partners (all mothers in the other diagnostic
groups had partners living in the home, although some
were unmarried). It is possible that the child's visible
impairment is also associated with fewer family-friend
and community contacts. as has been hypothesized (e.g.,
Benson et aI., 1991). There are several possibilities: the
family may avoid others because of some discomfort or
embarrassment related to the child's appearance; others
may avoid the family because of uncertainty of how to
behave in a potentially awkward social situation; or peer
teasing and other forms of rejection-independent of
adult behavior-may lead the family to generally perceive
the social network as unfriendly or unsupportive.~
l latter hypothesis is most plausible because the difference
.' in reported social support was not evident at time 1 before
peer interactions were a prominent influence in the lives
of these children. Speltz et al. (1992), in the first analyses
of a new longitudinal cohort, found that mothers of 3
month-old CLP babies before first surgery reported
greater social support than mothers with CP infants,
which suggests that visible CFA may in the early months
of life draw more supportive attention than invisible im
pairment. Perhaps, then, there is change over time in the
effects of visible impairment on the family's social sup
port network, with positive effects early on, followed by
adverse effects associated with the child's increasing so
cial contacts with community and peer group.
CONCLUSION

On the b~si~ of t~efil1dings fr9tn this ~nd previous work,

we would hypothesize that children with CFA have at
)east twice the risk of behavior problems at school entry
. than children generally, as defined by the relatively strin
gent criterion of extreme parent and teacher reports on a
standardized behavior checklist. Further, girls with CFA
may be judged by their mothers as more problematic than
boys at this age. The present results would also lead us to
hypothesize that behavior problem risk, and perhaps some
aspects of child self-perception, can be predicted in this
population by clinic observations of mother-child interac
tions in play and teaching situations during the late in

O'

fancy period. Finally, we would anticipate that the relation

between CFA visibility and family social support will

vary during the first 6 to 7 years of life, dependjn~. upon

the child's developmental age.

Larger and better-designed longitudinal studies are

needed to test these hypotheses with infants aIld I!r~~<;hoQJ .
children with CFA. This research should include measures
of speech, appearance, hearing, language and learning
skills, as these are factors that probably contribute to be
havior adjustment and self-perception in an interactive
manner with parent-child relationship variables. For ex
ample, we may find that children with CFA having more
severe speech difficulties and a parent with a controlling
style of teaching or play may be at higher risk for poor
adjustment than children with either factor alone. This
type of multifactorial approach to the prediction of individual differences in children with CFA will likely pro
duce a more reliable and sensitive psychological r i r
profile than studies focusing on only one or two variables
in isolation.

REFERENCES
ACHENBACH TM. Manual for the child behavior checklist and 1991
profile. Burlington, VT: University of Vennont, Department of Psy
chiatry, 1991 a.
ACHENBACH TM. Manual for the teacher's report fonn and 1991 profile.
Burlington, VT: University of Vennont, Department of Psychiatry,
1991b.
ACHENBACH TM, EDELBROCK CS. Manual for the child behavior check
list and revised child behavior profile. Burlington, VT: University of
Vennont, Department of Psychiatry, 1981.
ALLEN R, WASSERMAN GA, SEIDMAN S. Children with congenital anom
alies: the preschool period. J Pediatr Psychol 1990; 15:327-345.
ARGONA JA, EYBERG SM. Neglected children: mother's report of child
behavior problems and observed verbal behavior. Child Dev 1981;
52:596-602.
BARNARD K, HAMMOND MA, BOOTH CL, BEE HL, MITCHELL SK,
SPIEKER SJ. Measurement and meaning of parent-child interaction. In:
Morrison F, Lord C, Keating D, eds. Applied developmental psychol
ogy, Vol. 3. San Diego: Academic Press, 1989.
BENSON BA, GROSS AM, MESSER SC, KELLUM G, PASSMORE LA. Social
support networks among families of children with craniofacial anoma
lIes. Health Psychol 1991; 10:252-258.
BRODER H, STRAUSS RP. Self-concept of early primary school age
children with visible or invisible defects. Cleft Palate J 1989; 26:
114-117.
Dupuy HJ. A brief description of the research edition of the general
psychological well-being schedule (GWBS). Fairfax, Virginia: Na
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EDER RA. Uncovering young children's psychological selves: individ
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EYBERG SM, ROBINSON EA. Parent-child interaction training: effects on
family functioning. J Clin Child Psychol 1982; 11: 130-137.
GREENBERG MT, SPELTZ ML, DEKLYEN M. The role of attachment in
the development of disruptive behavior disorders. Dev Psychopathol
1993; 5: 191-213.
GOLDBERG S, BRACHFELD S, DIVITfO B. Feeding, fussing, and play:
parent-infant interaction in the first year as a function of pre-maturity
and perinatal medical problems. In: Field TM, Goldberg S, Stem D,

Speltz et aI., PSYCHOLOGICAL FOLLOW-UP

Sostek M, eds. High-risk infants and children: adult and peer interac
tions. New York: Academic Press.
HARPER D, RICHMAN L, SNIDER B. School adjustment and degree of
physical impainnent. J Pediatr Psychol 1980; 5:377-383.
KAPP K. Self-concept of the cleft lip or palate child. Cleft Palate J 1979;
16:171-176.
KAPP-SIMON K. Self-concept of primary school-age children with cleft
lip, cleft palate, or both. Cleft Palate J 1986; 23:24-27.
KAPP-SIMON K, SIMON D, KRISTOVICH S. Self-perception, social skills,
adjustment, and inhibition in young adolescents with craniofacial
anomalies. Cleft Palate J 1992; 29:352-356.
KAZAK A, PARKES L. Reliability and validity data for a social network
assessment technique. Unpublished manuscript, 1987.
KAZAK AE, REBER M, CARTER A. Structural and qualitative aspects of
social networks in families with young chronically ill children. J
PediatrPsychol1988; 13:171-182.
LEONARD BJ, BOUST JD, ABRAHAMS G, SIELAFF B. Self-concept of
children with cleft lip and/or palate. Cleft Palate J 1991; 28:347-353.
MCCONAUGHY SH, STANGER C, ACHENBACH TM. Three year course of
behavioral/emotional problems in a national sample of 4- to 16-year
olds: I. Agreement among infonnants. J Am Acad Child Adolesc
Psychiatry 1992; 31 :932-940.
RICHMAN LC. Behavior and achievement of cleft palate children. Cleft
Palate J 1976; 13:4-10.

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ROBINSON EA, EYBERG SM. The dyadic parent-child interaction coding

system: standardization and validation. J Consult Clin Psychol 1981;
49:245-250.
SPANIER GB. Measuring dyadic adjustment: new scales for assessing
the quality of marriage and similar dyads. J Marriage Family 1976;
38: 15-28.
SPELTZ ML, ARMSDEN G, CLARREN S. Effects of craniofacial birth
defects on maternal functioning post-infancy. J Pediatr Psychol 1990;
15: 177-196.
SPELTZ ML, ENDRIGA M, WILSON K, CLARREN SK. Effects during
infancy of cleft lip and/or palate on maternal and family psychosocial
status. Paper presented at the 49th Annual Meeting of the American
Cleft Palate-Craniofacial Association, May 12, Portland, Oregon,
1992.
TABACHNICK BG, FIDELL LS. Using multivariate statistics. New York:
Harper and Row, 1983.
TOBIASEN JM, PERKINS A, WEAVER SJ, HIEBERT MD. Incidence of
psychological adjustment problems in children with cleft lip and
palate. Paper presented at the 49th Annual Meeting of the American
Cleft Palate-Craniofacial Association, May 12, Portland, Oregon,
1992.
WEBSTER-STRATTON C. Mother perceptions and mother-child interac
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Child Psychol 1985; 14:334-339.

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October 1, 1992

By Lawrence Kutner

ALTHOUGH Ashleigh and Grace Anne Howe are 7-year-old identical twins, they've always looked
quite different from each other. Grace Anne was born with several congenital defects. The bones on
the left side of her face didn't form completely. She was born with a cleft palate and without a left
ear. Despite seven reconstructive operations, she still doesn't look like her sister or her classmates.
"No child has ever been nasty to Grace Anne because she looks different," said Dawn Howe, the
girls' mother, who lives in Quantico, Va. She admits that her daughter is often stared at by children
who don't know her. Adults will sometimes say things that are insensitive and ignorant; a man
recently asked if the girls' dance teacher would allow Grace Anne on stage during a class recital. Ms.
Howe told the man that there was nothing wrong with her daughter's legs.
A growing number of children are surviving accidents, illnesses and congenital defects that a few
decades ago would have been fatal and that today leave them looking different from other children
their age. That means that most children at some point will have a classmate who's been badly
burned, is bald from cancer chemotherapy, is missing parts of the body or is disfigured in some
other way. How children respond to a child who looks different is largely a function of their age, the
type of disfigurement and how the adults around them react.
Infants and toddlers seem to take physical differences among their playmates in stride. Scars or a
wheelchair may be curiosities but are not viewed as things to be feared or to become upset about.
"There may be an initial unwarranted fear of contagion among some preschoolers," said Dr. Stanley
D. Klein, a clinical psychologist in Boston and the publisher of Exceptional Parent magazine, which
is aimed at the parents of children with disabilities. For example, 4-year-old children may worry
that playing with a bald child might cause them to lose their own hair.
"But talking to them about what happened to that child helps their fear go away," Dr. Klein
continued. Children this age are uninhibitedly curious about people who look different. A 5-year-old
may wonder how a playmate who has a cleft palate brushes his teeth or whether burn scars are
painful.
Betsy Wilson, the director of Let's Face It, a national organization for people with facial deformities
and their families, which is based in Concord, Mass., lost her jaw to cancer 20 years ago and has
since had reconstructive surgery.

http://www.nytimes.com/1992/10/01/garden/parent-child.html?pagewanted=print

"Parents are embarrassed, but kids will ask me why my face looks funny," Ms. Wilson said. "I tell
them that I was very sick, that this is what the doctors did to make me better and that it isn't
painful. That honors their curiosity and doesn't tell them that it's bad."
Older children sometimes face more difficult problems with others' reactions. Jill Krementz, the
author of "How It Feels to Live With a Physical Disability" (1992, Simon & Schuster, $18), found
that while many of the disfigured children she interviewed received support from their peers, a few
were teased mercilessly or even attacked by schoolmates because of how they look.
"The only children who had a really painful time from their peers were the ones who had facial
disfigurements," Ms. Krementz said, adding that children who are missing limbs or have other
disabilities are more likely to receive comments on how well they are doing.
"But because the other kids don't know what to say and are fearful of saying the wrong thing, they
sometimes avoid the disabled kids altogether," she continued.
Since adolescence is a time when all children are more sensitive about how they look, it can be
particularly trying for children who are disfigured. They are bombarded by messages on television
and in magazines that equate physical beauty with success, popularity and attractiveness. They are
told (and believe) that even small defects, like a pimple, can lead to social rejection. They long
simply to blend in with their peers.
"One of the hardest parts of facial disfigurement is that you lose your anonymity," Ms. Wilson said.
"You have no control over people staring at you. We need, as parents, to get children to see the
person behind the face." Getting to Know the Child Behind the Face
IF your child looks different from his peers, there are some things you can do to help everyone in
the class or play group understand one another better. The first step is usually to meet with teachers
and administrators at your child's school to talk not only about your child's disabilities, if any, but
also about his strengths. Try to anticipate questions, and offer to provide information that will help
them appreciate your child for who he is.
"If the adults in the school community, including teachers, janitors and the principal, accept the
child, then it's easier for the children to do the same," said Dr. Stanley D. Klein, a clinical
psychologist in Boston and the publisher of Exceptional Parent magazine.
Here are some other things to keep in mind and to try:
Keep a photo album of your child, both alone and with friends and family members.
Start as soon as possible, rather than waiting for corrective surgery. "That tells him that the family
has accepted him from the time of birth and continues to accept him as changes occur," said Dr.
Kathy Kapp-Simon, a psychologist at the craniofacial center at the University of Illinois in Chicago.
"There wasn't a magic moment at which he became acceptable."
Prepare your child for some teasing.

http://www.nytimes.com/1992/10/01/garden/parent-child.html?pagewanted=print

Sometimes, teasing is an immature way for children to express their own discomfort and to try to
ask questions. Try rehearsing some answers your child might give if someone teases him about his
appearance.
"Try to have your child learn to stand up for himself without putting the other child down," said Dr.
Kapp-Simon. "Your child needs to hear you answering questions in the way you wish him to handle
them. If you're comfortable, then your child will also be comfortable."
Find a mentor for older children, especially adolescents.
These children need to know that they can be successful and happy as adults, even if they're having
some trouble now. Support groups often try to pair children with successful adults who have had the
same type of disfigurement. That often gives them a new and better perspective on their future.
Drawing.
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THB NBW YORK TIMBS, THURSDA~ OCTOBBR 1,1992

Parent &.Child

Lawrence Kutner

When a child faces

life with ~ physical
disfigurement.
Rodrtao SbopIi

THOUGH Ashleigh and Grace Anne

is missing parts of the body or is disfigured in some
Howe are 7-year-old identical twins,
other way. How childr~n respond to a child who
they've always _looked quite different
looks different is largely a function.of their age, the
type of disfigurement and how the adults around
from each other. Grace Anne was born
them react.'
_
with several congenital defects. The bones on the
left side of her face didn't form completely. She
Infants and toddlers seem to take physical dif
ferences among their playmates in stride. SCars or
was born with a cleft palate and Without a left ear.
Despite seven reconstructive operations, she still
a wheelchair may be curiosities but are not viewed
as things to be feared or to become upset about.
'doesn't look like her sister or her classmates.
t, ~hild has' ever been nasty to Grace Anne
uThere may be an initial unwarranted fear of
'he looks different," said Dawn Howe, the
contagion among some preschoolers,"- said Dr.
""
her, who lives in Quantico, Va. She ad- .Stanley D. Klein, a clinical psychologist in BoSton
her daughter is often stared at by chiland the publisher of Exceptional Parent magazine,
01 _
.JO don't know her. Adults will sometimes
which is aimed at the parents of children with
say things that are insensitive and ignorant; a man
disabilities. For example, 4~year-old children may
recently asked if the girls' dance teacher would
worry that playing with a bald child might cause
allow Grace Anne on stage during a class recital. ~ to...lose their own hair.'
Ms. Howe told the man that there was nothing
"But talking to them abo}ll--Wb~penedto
wrong with her daughter's legs.
that child helpstheir~go away," Dr. Klein
continued. Children this age are uninhibitedly curi
A growing number of children are surviving
ous about people who look different. A 5-year-old
accidents, illnesses and congenital defects that a
few decades ago would have been fatal and that
may wonder how a playmate who has a cleft palate
today leave them looking different from other
brushes's teeth or whether burn scars are painful.
children their age. That means that most children
at some point will have a classmate who's been
etsy Wilson, the director of Let's Face It, a
ational organization for people with facial defor
badly burned, is bald from cancer chemotherapy,

II
.e'

mities and their families, which is based in Con

cord, Mass., lost her jaw to cancer 20 years ago and
has since had reconstructive surgery.
"Parents are embarrassed, but kids will ask me
why my face looks funny," Ms. Wilson said. "1 teU
them that I was very sick, that this is what the
doctors did to make me better and that it isn't
painful. That honors their curiosity and doesn't tell
them that it's bad."
Older children sometimes face more difficult
problems with others' reactions. Jill Krementz, the
author of "How It Feels to Live With a' Physical
Disability" (1992, Simon & Schuster, $18), found
that while man~ of the disfirred childre""ii"'Siie
interviewed recei~ea support rom their peers, a
few were teased mercilessly or even attacked 6y
schoolmates because of how they look
\tt1be only children who had a -really painful time
from their peers were the ones who had facial'
disfigurements" Ms. Krementz said. adding 'that
children who are missing limbs or have other
. isabilities are more likel to receive comments on
ow we
e are Oln .
"But because the other ids don't know what to
say and are fearful of saying the wrong thing, they
sometimes avoid the disabled kids altogether," she
continued.
.
.
Since adolescence is a time when all children are
more sensitive about how they look, it can be
particularly tryiilg for children who are disfigured.
They are bombarded by me.ssages on television
and in magaZines that equate physical beauty with
success, popularity and attractiveness. They are
told (and believe) that even small defects, like a
pimple, can lead to social rejection. They long
simply to blend in with their peers.
'One of the hardest parts of facia I disfigurement
is that you lose your anonymity," Ms. Wilson said.
"You have no control over people staring at you.
We need, as parents, to get children to see the
person behind the face."
-0

Getting to Know the Child Behind t4e Face

F your child looks different

from his peers, there are
some things you can do to help
everyone in the class or play
group understand one another bet
ter. The first step is usually to
meet with teachers and adminis
trators a~ your child~s school to
talk not only about your child's
disabilities, if any, but also about
his strengths. Try to anticipate
~stions, and offer to prOVide in
nation that will help them ap
=iate your child for who he is.
If the adults in the school com
munity, including teachers, jani
tors and the principal, accept the
child, then it's easier for the chil
dren to do the sa,me," said Dr.
Stanley D. Klein, a clinical psy
chologist in Boston and the pub-

Usher of Exceptional Parent mag

azine.
Here are some other things to
keep in mind and tQ try:
Keep a photo album of your
child, both alone and with friends
and famlly members.
Start as soon as possible, rather
than waiting for corrective sur
gery. "That tells him that the fam
ily has accepted him from the
time of birth and continues to ac
cept him as changes occur," said
Dr. Kathy Kapp-Simon, a psychol
ogist at the craniofacial center at
the University of Illinois in Chi
cago. "There wasn't a magic mo
ment at which he became accept
able."
Prepare your child for some
teasing.

Stressing
strengths, not
disabilities.
Sometimes, teasing is an imma
ture way for children to express
their own discomfon and to try to
ask questions. Try rehearsing
some answers your child might
give if someone teases him about
his appearance.
"Try to have your child learn to

stand up for himself without

putting the other child down," said
Dr. Kapp-Simon. "Your child
needs to hear you answering ques
tions in the way you wish him to
handle them. If you're comfort
able, then your child will also be
comfonable."
Find a mentor for older chil
dren, especially adolescents.
These children need to know
that they can be successful and
happy as adults, even if they're
Ihaving some trouble now. Support
groups often try to pair children
with successful adults who have ,
had the same type of disfigure
ment. That often gives them a new
-and better perspective on their
future.

THE PROVIDENCE. SUNDAY JOURNAL

I-I

OCTOBER 7, 1990

,LIVING

:-.

4.

~~5

Facing up
to the problems
of disfigurement

In a cuJture that worships .good looks,

appearance-impaired children have it tough
Alleatowa Mora'" CaD

ALLENTOWN, Pa.

HEN ANN HILL BEUF was

a little girl Living in Gary,
Ind., she and her mother pe
riodically took a bus Into Chicago to
visit Beuf's ~dlatrlclJm. Also on the
bus now and ~~en was a Ilttle girl with
a disfiguring red birthmark on her face.
Although Beuf doesn't remember
the child, het"mother recently told her
that .heIl the little girl got on, they
the bus and walk the rest:
1of t
to the pediatrician's office
Ib
mother said, "I was afraid
Iyou'd.y IOmething to the child."
"That was my mother's way of
Iidealing with an appearance-impaired
:,child," Beuf explained' during a recent

W_oIf

~nterview.

While she has no memory of that

~xper~ence, she's seen plenty of other

~ppearance-impalred children during
~O years of sociological research, and

~hat she's learned from studying them

~as

recently been pubUshed In her

pook. Beauty Is the Beast (University

f Pennsylvania Press).

The parents to blame?

I Beuf Is particularly disturbed

by

Ihe evidence she uncovered that chil

~ren who look different are treated dif
lerently - even by their parents. Db
1ervation of the behavior of parents of
psfigured children, she writes,
Ishowed that they held their infants
rSs, touched them affectionately less
lnd smiled and laUghed less. In addl
on. these mothers prOVided less tac

le-kinestlletic stimulation and vocal

mtion to their Infants."

\ Parents often saddle thoSe children

~ith another burden, she' charged,

[when they fight over ~ho's to blame

~r the Impairment, dOUbling the

jlild's anguish because he also feels

,uilty about being the' cause of their

isseDlioa."

\~professor

members. .

'.\

'\ .
- cleft palates, psoriasis and acne, fa
,': '~.
cial burns. obesity, and those who wear
"soda-pop-bottle-bottom glasses."
"America worships beauty," Beuf
says, and enormous sums of money are
spent in the quest for it. But "while few
, ..- Journal"Bul~t~n illustration by F:R~K GERARDI
.. , '/
can conform to the ultimate oeflnttion
i
of beauty as repre$ented by a handful
of mOdels and entertainment personal
And parents often resist
.

ities. It is more possible than ever for ances and peers, close friends or famtly
lutlons that would;'ease an appearance

most people to present a pleasant or members, and even professionals, pri

marily doctors and teachers.
impaired chUd's burden - replacing an'

'normal,' if not beautiful, appearance."

. Children are extremely aware of extremeiy myop.ic child's heavy I~

In our country, we usually can af-'

with contact lenses, for Instance. ,.. :

ford to get disfigurements fiXed, she and sensitive to staring, la~ghing, the
The Insensitivity of physicians who

conspiratorial exchange of glances be

pointed out. "For this reason t~e person
trivialize appearance-related disorders

whose appearance is Impaired, who tween two strangers, innocent or rude

as "only cosmetic" especially Infuriates

stands out because of obvious flaws or questions, taunting, name caillng, In

Beuf. Obese children are told thelr

sults and even physical abuse. Name

disfigurements, is perceived as a devi
--baby fat" will disappear, 'concerns 'Qf

calling and ridicule, particularly, are

ant."
the stigmatizing weapons of peers, myopic children are curtly dlsmlsSe,(as
Children's abilities to cope with an
long as their thick glasses functlOll;8nd
impaired appearance are determined Beufsays.
She cited "Fred," a handsome child some are reminded '''you're lu~ky yoq
,by' the psychologlcal and social fe
except for large, protrUding ears. UHe ar~n 't bUnd ... or diabetic :~: or baye
sources they have, Beuf says.
;,~
later had his ears -fixed' by a pediatric cancer."
Psychological resources Include a
.: ".i
sense of humor, self-esteem, creativity surgeon. His parents, both school
Some encouraging new~ ~;
teachers, believed it was essential that
and enthusiasm - all weapons against
the boy undergo the procedure, be
despair.
Beuf Is encouraged to see ~hit.some
Social assets Include high economic cause they were aware that he was television shOWI are slowly changing
teased unmercif~ily at school. The oth
status, high parental status in the com

the pUblic's perception of appearao~

munity, ethnic group support, parental
er children called him names, such as Impaired children. '-several of the Dew
'Dumbo ears' and 'Alfred E. Neuman.' characters on Seshme Street'" have
education and political power. Igno

rance, poverty, low socio-economlc

His home-room teacher didn't see any
what we would call st1gma~nl coD~
harm in this and told him to 'laugh ditlons, and a new group of puppe~ aU
status, lack of education and social iso
with them.'"
lation are detrimental.
of whom are ap~ance-lmpa1rJ.K1,are'
Beuf reports that In all the situa
making appearanc~ 1;11 over .tbt= .COUIl
Parents must be Willing to fight for
~".: ,': -.a .. .a J l~~
tions in which she's worked, either the
their child, Beuf emphasized, -'and why try," she said.
appearance-Impaired children or their, they don't'ls sometimes a mystery."
uMcDonald's commercials have'
parents recalled episodes of rude be
She ,speculates that it could be because also provided Insight - one' leatur~
they were taught as children not to deaf people and another, a girl lit a
havior - socially stigmatizing inci
'make waves."
dents - by total strangers, acquaint
wheelchair that wasn't seen untll'the
camera faded back for" a 'complete .
shot," Beuf said, adding that the suc
cess of Beauty and'the Bea$t on televl
sion and Phantom of the. Opera' OIl
Broadway may indlcattt a Jn9re open
attitude toward people with ImPaired
AUenlown Moma... CaU
Institute for Identity and Body
appearance. But '-the bad new. I. that
A number of foundations to aid Image, Box 98048" Houston, TX
most commercials continue to convey
77048.
the appearance-impaired have been
beauty as a lon$-halred Qlonel with bl"
established In recent years. These
Let's Face It, Box 711, Con..
eyes."
;,
:
groups supply educational material
cord, MA 01742.
She received graphic proof .01 that
on partiCUlar disorders, advise pa
National Neurofibromatosis
perception recently when she'w~ tp
tients and their families, carry out re
Foundation Inc., 141 Fifth Ave., Suite
buy new c09tact lenses.
'
.
search and provide emotional sup
7-S, New York, NY 10010.
"I .can't get clear lenses, because
port. The Ust includes:
I'm so blind that il one falls out I'd neVe
National Stroke Association,
Craniofacial center, Children's
er find It. So I asked for the brown-Unt
1420 Ogden St., Denver. CO 80218.
Hospital of Boston, 300 Longwood
ed type, because my eyes are brown.
Sturges-Weber Foundation,
Ave., Boston, MA 02115.
'''The woman'told me nobody ever
P.O.
Box
460931,
Aurora,
CO
80015.
International
Craniofacial
asks for brown contacts. I ended up
Foundation, 10210 North Central Ex
Vitiligo Group, P.O. Box 919,
with green because that was the clot
pressway, LB 37. Dallas, TX 75231.
LondonSE218AW,England. .
est they had to my own eye color,~
~'

,By ROSEMARY JONES

Disfigured
children
exrerience
episodes of I,:
rude behavior..
from everyo~e:
from total ',"
strangers to ,;';
family

of sociology at
I
College In Allentown, said

~
to an important patient

ppu
because of her close work

lith Dr. Judith Porter of 'Bryn Mawr

pll~ge's sociology department, who

las doing research on children with

rin diseases. With the cooperation of

lur Philadelpbla-area medical schools

Id hospitals, she also Interviewed

\ildren with other physical anomalies

J{~
,A:

Ob~ ~

Helpfor the appearance-inlpaired