The.Disabled Child A The Family and
the Physician *

Twenty-fifth Anniversary Foundation Day Lecture
Our Lady's Hospital for Sick Children, Dublin, Ireland

C. EVERETT KOOP
M.D., Sc.D.
Surgeon General
U.S. Public Health Service

After almost 36 years as the Surgeon-
inChief of the Children's Hospital of
Philadelphia, I have entered the
public domain and am now the Deputy !
Assistant Secretary for Health and the
Surgeon General of the Public Health
Service in the United States. The
departure from the operating theatre,
the decision-making processes dealing
with life and death, and the demands
of teaching I miss to some extent, but
not nearly as much as I had expected.
I miss the actual operating almost not I
at all, but 1 do miss being able to
diagnose the sore point of a family's
anxiety and bring them to an accom-
modation with all their concerns that
seems to work.

We will soon come to the end of
the International Year of Disabled
Persons and it is fitting, therefore, on
this 25th Anniversary of the founding
of this remarkable hospital dedicated
to eliminating handicaps that we talk
about the disabled and 1 would like to
do so in the context of family and
private initiative as well as the some-
times necessary public and institutional
setting.

The Disabled

I was pleased that this International
Year .of Disabled Persons was not called
the International Year of Handicapped
Persons. Individuals are disabled. It is
society or other extraneous forces
that handicap them. If I am propelling
myself along the street in a wheel-
chair, I only become handicapped
when I have to go up or down steps
where there is no sloping ramp, or
when my arthritis makes it impossible
to safely manipulate my vehicle.

I am assuming that you have
espoused Christian values regarding the
sanctity of human life and the integrity
of the family; that the family was
instituted by God as the basic module
around which society and, therefore,
civibsation  is built and that each

a person with unique preciousness  overall, there is the thought of im-
because he was created in the image  pending doom, particularly associated
of God.                     with economics.

. . .

When the family is threatened by '
poverty, by inadequate education and
the lack of a beneficent social planning
government, these deprivations fre-
quently mould, knit and glue together
the family structure so that it can survive
and prosper in the face of adversity.
So it is with the introduction of a
disabled child into a family, provided
that we build in the proper supports.

The past several decades have seen
encroachment on the traditional family
structure by the many anti-family
forces abroad in the Western World
today. Add to that the preoccupation
with perfect health, and compound it
all with the new economics of modem
medicine - cost effectiveness - and
you must agree that the ordinary
family is at risk. Deliver a disabled
baby into that family and risk becomes
a reality in potential disaster - disaster
for the family in part but especially
for the youngster.

Let me set the stage. A family is
expecting a baby for nine long months
and their mental image is that of the
bright-eyed, adorable baby on the
label of a baby food jar. The expected
labour arrives, the delivery is difficult,
and the mother wakes not to cuddle
the cherubic baby of her dreams in
those first precious moments of
bonding but to be told her baby had
a congenital defect and even now is
en route with her husband to a
medical centre where complex surgery
will be performed in an effort to save
the child's life, after which a long
process: of habilitation must take
place for the youngster to assume a
normal role in society. The props are
gone. Hope has become despair. Joyful
expectancy has been replaced by a
fear of the unknown, a devastating
anxiety of how to cope. She does
not know  whether the medical
estimate of form and function is
realistic or grossly deficient and,

It is my belief that the baby - my
patient - will do best in the heart of
his family and that the shattered
family can be rehabilitated. I know
what can be accomplished in the
habilitation of a child born less than
perfect. I know what can be done
with that child's family. I know that
these children become loved and
loving, that they are creative, and that
their entrance into a family is fre-
quently looked back upon in sub-
sequent years as an extraordinarily
positive experience. I am aware that
those who never had the privilege of
working with handicapped children
after the correction of a congenital
defect think that the life of the child
could obviously be nothing but
unhappy and miserable. Yet it has
been my constant experience that
disability and unhappiness do not go
hand in hand. The most unhappy
children I have known have been
completely normal. On the other
hand, there is remarkable joy and
happiness in the lives of .most handi-
capped children; yet some have borne
burdens which I would have found
difficult to face indeed.

No one enters the medical pro-
fession skilful in managing the prob-
lems that are generated in the hospital,
in the family, and in the community
by the arrival of a disabled child. The
physician's role is difficult and the
skills he requires are hard to learn.
The physician who understands his
role in the treatment of disease and
the postponement of death,frequently
does not understand his role in making
the disability of a child free of handi-
caps as the child is rehabilitated into
society. More than that, it may be that
the physician himself is affected by
the catastrophic nature of the dis-
ability and finds it difficult if not
impossible to cope with the multi-
tudinous problems that surround the
diagnosis.


The problems in management are
related to' the patient himself, the
patient's parents, the broader aspect
of the patient's family, .particularly
his siblings, the hospital personnel,
and the community. Each of these
requires a  different approach, a
different understanding, and a different
management goal but, if that were
not difficult enough, it must also be
recognised that these management
goals vary at different times in the
course of the child's disease.

The Physician's Role

While it is true that no one enjoys the
management of the emotional prob-
lems surrotiding the disabled child,
there is, nevertheless, a satisfaction to
the one who serves as guide through
difficult times to the end that the
family is salvaged, the community is,
able to get on without bitterness
toward the hospital or the medical
profession, and the hospital staff is
able to return to the routines df care,
knowing that they have played a
positive role in an unpleasant situation.
For this reason, the physician aggned
the primary role must be chosen care-
fully. The process of relating to the
family and to the paediatric patient
must begin at the very fit encounter
between physician and family. He
must project his integrity and his
capacity for compassion and under-
standing, in such a way that the family
will be assured during the time of
diagnostic confirmatory studies that,
when they are completed, the surgeon
will not only be honest in his dealings
with the family, but will to the best of
his ability help them to understand
the situation and bear the burden.

Believing that when the family and
the disabled child are given the proper
support and guidance, they will all be
better for the experience, it has been
my lifelong practice to provide this
support and guidance and I know it
works.

The manner in which the family is
told the diagnosis and prognosis has
to be positive and have built into it
every single possible supportive system
and promise that it is possible for the
primary physician to accomplish,
whether he be paediatrician, obste-
trician or family practitioner.

What do I mean by being suppor-
tive? I am always realistic and, in
reference to the deformity in question,
tend to be pessimistic if anything so
that, if things work out better than
my experience would indicate, ?htn
that is a positive dividend for the
family rather than a disappointing
descent to reality. On the other hand,
as the paediatric surgeon into whose
hands the problem has been de-
livered for at least immediate atten-

tion, I feel certain concerns and I.feel   "Why did you tiy so hard to save my
them deeply. 1 recognise the family's   child's life?"  nor has any grown
tendency to believe that they are   patient (and some are over 35) ever
responsible for the defect, perhaps   put that question to me.
guilty about it, and certainly angry    Now I realise that my approach is
and frustrated into the bargain. I feel I   very old-fashioned. I recently .came
must be authoritative, transmit a sense   into a situation in a nearby hospital
of competence baaed upon experience,   third-hand. The opening gambit on the
and give the impression that, having   part of the neonatologist to the
been through this situation before   parents of a mongoloid child with
with other families and their defective   intestinal obstru+on was something
child, I know my way around the   like this:  "Your child has Down's
morass of private and government   Syndrome which means he will be
agencies that can give aid. I will act as   severely, mentally retarded. He also
the pilot through these troubled   has a surgical problem of intestinal
waters to see that every conceivable   obstruction which will kill him if
supportive effort that is available is   uncorrected. You have several options
brought to bear upon the eventual   in treatment, the first of which is to
outcome in this specific instance.      do nothing, in which case you will not
It has been my custom for several   have to face either of the problems
decades to telephone the mothe.r in   that I have just outlined."
her lying& hospital or at home and !   . That family opted not to have ,
assure her of all the things that I ttink   their child operated upon and then,
will be supportive. I repeat tb.ese   foolishly, that neonatologist asked for
things to her husband and ask him to   a surgical consultation by one of my
go home and transmit them to his   surgical colleagues. This immediately
wife. We have a built-in nursing and   provided a contrary suggested form of
social service communication system   management and, after an unbeliev-
that underlines what I have tried to do   able number of legal, social and
personally. I might also add that my   personal manoeuvres which I will not
colleagues involved in the same type of   go into, the child was operated upon
surgical endeavour practise medicine in  (it had malrotation of the colon; not
this same way.              duodenal atresia and, therefore, the
Contrary to what the local protec-   surgery was more urgently indicated
tive obstetrician usually wants to do, I   than usual), recovered well, was
insist that the mother come to see her   adopted by a marvellous lady who had
child as soon as she possibly can and,   recently lost a child and has entered
even though it may be bandaged,   what I think will be a lifelong loving
intubated, monitored and being fed   supportive relationship.
with a hyperalimentation line, I want    Now, I am absolutely convinced
her to touch her child and if possible   that the parents who opted to let
even hold it and cuddle it to establish   their child die and only consented to
as best we can those bonds which   its surgery when it was guaranteed
should have been established earlier.   that they would never have to be
If 1 have anything to do with it, this   concerned with the child again, will
child is going to make it but he is   have - if not now, later - the grief,
going to make it ever so much better   the guilt, the shame, the physical
socially and emotionally if he can   problems and even the mental aber-
make it in his family.              rations that come with the abandon-
I read constantly about the prob-   ment of one's flesh and blood.
lems that parents face in these    Last year in ' Birmingham after
situations: how it is like losing a child,   presentation of our ftis `Whatever
how they experience a prolonged   Happened to the Human Race?", a
period of grief, how they feel isolated   woman rose to ask a question. This
from society, how they share guilt and   is essentially what she said: "I am a
shame and, indeed, eventually might   general practitioner in the National
become physically ill and mentally   Health Service. Three years ago a
disturbed.                 daughter was born to us who had
It has been my lifelong experience   spina bifida and I was told that she
that the support that I have just   would die within three weeks. When a
mentioned actually prevents these
catastr&hes. When it takes so little   nurse told me that she was being
                    starved to death, I signed her out of

effort and is so rewarding, I cannot
see how there can be any argument
about how the family should be
approached.

Treatment of the Severely Disabled
infant
One of the proofs of this is that no
parent has ever come to me to say

the hospital against advice. She is now
a bright, adorable, three-year-old girl
who is the light of our lives. However,
she has an incontinent bladder and
orthopaedic deformities which keep
her from walking. But because I
signed her out of the hospital against
advice and because she was initially
classified as non-treatable, there is no


way that I can obtain any urologic or
orthopaedic help for my child. At my
own expense, I am keeping her on
urinary antibiotics in order to protect
her kidneys. What can I do?"

Professor Zachary told her that her
only recourse was to seek private care
in England and I told her that, if she
would get the child to Philadelphia,
we would eventually send her home
walking in calipers, controlling her
urine with an ileal bladder and she
might even be the second lady Prime
Minister of Great Britain.

A young man of my acquaintance,
now in graduate school, was born
without arms below the elbow and
missing one leg below the knee. He
was the victim of the prescription of
thalidamide to his pregnant mother
at the time of limb budding. When his
father stood at his baas&t in the I
hospital where he was born, he said
only this: "This one needs our love
more." With that love and muddling
through, it had a happy ending -
which is really now only the beginning
of this young man's productive life.
The love they needed, they had; the
muddling through could have been
better.

Here is how the young man feels
today: "I am very glad to be alive. I
live a full, meaningful life. I have many
friends and many things that I want
to do in life. I think the secret of
living with a handicap is mahsing who
you are - that you are a human
being, somebody who is very special
- looking at the things that you can
do in spite of your handicap, and
maybe even through your handicap."

This family in crisis is a threat to
itself as well as to other families;
indeed, to all of society as well. It is
a crisis situation which must be faced;
it has a solution; indeed, it has long-
term benefits even for you and me.

One of the so-called options in
treating a youngster such as I have
just described is to do nothing and let
the baby expire from inattention. The
relativistic ethic in medicine which
permits this has been the target of my
concern for the past two years. I
allude to it only in passing to say that
there has to be a better way than
killing the patient to get rid of the
defect.

For almost thirty-five years now, I
have devoted the major part of my
professional life to the management of
children born with a congenital defect.
Because I was the sixth person in the
United States to limit his surgical
practice to the care of children, I was
in my early years a surgeon of the
skin and its contents. Therefore, my
experience with congenital defects is
broader than just the field that
ordinarily  is now called general

paediatric surgery. Although in. my
more recent years I have become a
specialist's specialist and my interests
have been confined to those congenital
anomalies incompatible with life but,
nevertheless,  amenable to surgical
correction, early on I was concerned
with the management of cleft lips and
palates,  orthopaedic defects, spina
bitida and its complications, congenital
heart disease, and major urologic
defects.

There was a day when medicine
was not only a profession but was
considered to be an art. There were
even those who considered it to be a
calling such as the ministry. A man
who practised medicine was called to
a compassionate ethic that led him to
the service of his fellow man. He
worked in diagnosis and treatment in
the realm of trust between the patient
and himself. When he dealt with a
child or an incompetent adult, he
dealt in the realm of trust between
the patient's family and himself.

One of the distortions in society
which will not benefit any family and
least of all the family we are discussing
is a change in semantics and, hence,
philosophy in the practise of medicine.

Consumerism in Medicine

The semantic change which has
crept into medicine is one in which
the patient is called the consumer. The
patient is called the consumer as
though he were eating cereal. The
physician is called a provider as
though he were delivering petrol. We
refer to the health care delivery system
as though it were some monolithic
structure from which the consumer
had the right to expect only success.
Delivery systems and consumers imply
contracts. Contracts imply restrictions
and the restrictions that are implied
are not just on the physician but they
end up by being restrictions on the
type of health care actually delivered
- the very thing that the system is
seeking to avoid by the semantic
change.

One of the complications of this
change toward consumerism is the
expectancy. of perfection. There was a
day when the patient (not the con-
sumer) had confidence in his physician
in such a way that .he saw him
practising in the realm of trust, knew
he was Being to get the best that was
possible for his physician to accom-
plish. Now, after the provider has
outlined for the consumer what his
expectancy is from the ensuing re-
lationship, if the result is either less
than perfection or less than the
provider's estimate of his approach to
perfection, then the consumer feels
it is his right to be compensated for
the discrepancy.

I would like to suggest to you some
of the things that happen in reference
to the handicapped newborn and his
family. Eventually, one physician
assumes the responsibility for primary
care; he is the overseer, the guide, and
the counsellor. He will be representa-
tive of one of four kinds of physicians.

First, he might be a physician who
will act in support of the child and the
family as I have suggested. 1 think it
is not only fitting and proper, but
rewarding to all concerned as well.
Secondly, there will be a physician
who presents death as an option in
management.

Thirdly, there will be the physician
who suggests institutionalization for
the child in question.
Finally, there will be the physician
who will be one of the previous two
but who becomes hostile to the family
if his advice is not taken.

`IheFamilyinCrisis

What of the parents? They have
several courses of action open to them.
If they are not in the hands of a team
that will do all it can to bring the
pertinent agencies into contact with
the family for their ultimate benefit,
they will have to forage for themselves.
These parents seek on their own what
society has to offer and usually admit
that they face society in an adversary
position. Most apply their learning
to their own child and adjust slowly
and with difficulty to the life that lies
ahead of them as does their child.
Occasionally, a set of parents will
become so incensed at the failure of
support from society that they will try
to do for similarly afflicted children
all they have learned to do for their
own. Out of what is early on a selfuh
exploration there comes the desire to
share with others; of such stuff are
local and national foundations formed
for the betterment of specific diag-
nostic problems.

How does an. outsider view the
physician? Roslyn Benjamin Darling
has done this in a book appropriately
entitled Families Against Society. In
reference to paediatricians caring for
spina bifida patients being raised. in
intact families, she had this to. say:
"Some doctors were quite sympathetic
toward   parents  of handicapped
children. Others were not. A few were
decidedly hostile toward parents who
kept such children at home. These
doctors'  views are understandable
within the context of their socializa-
tion and the stigmatizing society and
their training in medical school where
success is typically equated with
curing and normalcy of function and
problems are treated on an individual-
istic rather than a societal basis."

I have tried to paint, in broad


strokes, the family in crisis, particu-
larly with a disabled child. I would
like to say a few words about solutions
and non-solutions as weIl as the.
side-effects of society's proper care of
the situation.

One non-solution I have already
referred to is getting rid of the baby.
The medical profession has tradition-
ally made its treatment of patients a
reflection of our society's concern for
those who are ill or helpless. `Often
the profession has acted as advocate
for those who had no one else to stand
up for them. In the Hippocratic
tradition and in line with the Judeo-
Christian ethic, the medical profession
formerly responded with love and
compassion toward the helpless child
and I think that is the only acceptable
way it can function in the future.

I would like to tell you about a
computer that can give courage and
care, to remind you that experience
cuts costs, and that ingenuity can take
the handicapped out of an institution
and restore him to his family and
home.

National Advisory &mice

In the years ahead of me in Govem-
ment, it is my hope that I can make
available to physicians and parents a
comprehensive service to take the
sting out of managing a handicapped
chiId. What I envisage is a National
Computerized Setice that could be
questioned by physician or parent to
provide for any handicapping diagnosis,
the most competent diagnostic service
close to home, the closest -competent
therapeutic service, a list of all the
available Governmental and private
agencies that could be of help to the
parents and their other children and,
finally, a read-out of nearby parents
with similar situations who have coped
with the problem in the past.

If we could make this service
available to parents and physicians
alike, I think we would remove the
terrible fear that exists that the odds
are too great against the handicapped
child and his family to make any
effort worthwhile and to slay forever
the myth that only perfect quality of
life is life worth living. That is a com-
puter that can deliver care and courage.

As experience grows, as techniques
improve, hospital care is shortened,
rehabilitation is quicker, and the
economic impact is far less. I have
repaired a great many thoracic wall
defects. During the operation in days
gone by I used to transfuse these
patients, post-operatively they were in
oxygen tents, their hospitalization
consumed three weeks, and their
return to normal activity was delayed
for three months. Now, when in
certain seasons of the year I do one of
these every operating day, I never use

a blood transfusion, post-operative
oxygen is almost unheard of, hospitali-
zation varies from three to seven days,
and full activity is resumed two weeks
after discharge. That is experience that
cuts cost.

In the extraordinary care which is
absolutely essential to the surgical
management of any congenital defect
incompatible with life but amenable to
surgical correction, there will be
certain patients who become respirator
dependent. As such they live in
hospitals, they are extraordinarily
expensive, and they are deprived of
the nurture of the family because
they cannot live at home. It does not
have to be this way. Taking our cue
from a remarkable French experience
in a northern suburb of Paris, we now
have sent a number of respirator-
dependent patients home. We have
had to revise the technology of their
care, but, in addition to the tremen-
dous human benefits to the family and
the patient, the cost has been cut from
$1,000 a day for care in a respiratory
unit in the hospital to $120 a day at
home. As the numbers increase, I am
confident that this cost can be reduced
to $100 a week. Incidentally, the
process of weaning the youngster off
the respirator is better accomplished
in the loving environment at home
than it is in the caring but, neverthe-
less; non-family atmosphere of the
hospital.

And, the care of those youngsters
at home does not have to be done at
the cost of the Government. Given
enough patients at home on respirators,
the French experience has shown that
competitive free enterprise can deliver
a superior service to patients and
families than that provided by the
Government and can do it more
cheaply.

This is the only one instance where
ingenuity can restore a child to his
home and family and at a savings.

Beneficial Side-effects of TTrerapy
There are beneficial side-effects to all
of us that come from our attention on
the care of the disabled newborn.
First of all, as the patient is benefited,
so is his family. Secondly, the necessity
for the special care required raises up
a new type of paraprofessional that
makes the care of the next patient
easier and cheaper but also has a
spin+ff:to the care of patients with
similar or related if not identical
problems. Finally, every so often there
comes a time when the-experience and
sometimes the ,mcrlfice of one child
will provide untold benefits to other
patients.

A number of years ago a newborn
child was operated upon in the Chil-
dren's Hospital of Philadelphia and

almost her entire bowel was found to
be gangrenous; the unaffected bowel
was not long enough to support life.
In an institution aggressively seeking
innovative  procedures and trying
desperately to push back the frontiers
of paediatric surgery, one of my
colleagues resected the gangrenous
bowel and kept the child alive on total
parenteral nutrition. She never ate by
mouth; all her nutrition was supplied
by vein. The hope was that a small
bowel transplant would eventually be
possible to restore this child to satis-
factory existence. Before that tech-
nique could be achieved, the patient
succumbed but, until then, she had
been on total intravenous feedings,
gaining weight and developing accord-
ing to acceptable standards over a
period of 400 days. The cost was
enormous. The patient died &a.(
because she was the fti to ever be
maintained on total parenteral nutri-
tion, medical science learned a great
proportion of what it now knows
about hyperalimentation or total
parenteral nutrition from this one
little girl. It is, without doubt, one of
the greatest medical advances of the
past several decades.

What we learned from that experi-
ence was intended for her own good
and not for the good of society. But
it did provide society with a now
recognized nutritional technique which
has saved the lives of thousands upon
thousands of children and hundreds
of thousands of adults around the
world. In addition to that, hospital
stays have been shortened, wounds
have healed more quickly, rehabilita-
tion has been possible sooner, and
hitherto    almost   unmanageable
situations like smalI intestinal fistulae
have come under surgical control.

Hospitalization for this nutritional
support alone averages about $300 a
day and now can be done at home for
about one-tenth of that cost.

I have spent my life professionally
in the care of what the world called
handicapped children. All of these
had a physical defect to start with,
some were habilitated to be imi&
tinguishable from normal. Others were
not pristine in form or function. Some
had a mental handicap as well. They
live and do well in families. They
merely exist in institutions. I have
seen many childless couples become
a family when they took a handi-
capped child by adoption. Other
traditional natural families have ex-
panded by the same process. It ah
takes a tremendous investment in
vision, time, effort, and money. There
are tragedies and triumphs.

I would like to close with an
anecdote.

Some time ago, in preparation of a


talk I was going to give in Toronto, I
intervicv&d the mother of one of
my patients and told her I would like
to quote her answers to two questions.

The first question I asked was:
"What is the most awful thing that
ever happened to you in life?"
And she said:  "Having our son
born with all those defects that
required 37 operations to correct."
Having performed 22 of those
operations and having stayed with her
during the others, 1 said: "That was an
easy answer and I expected it. But
now tell me, what is the best thing
that ever happened to you?"

And she said:  "Having our son
born with all those defects that
required 37 operations to correct."
Bonnie Jean Wheeler wrote a book
last year and sent me the manuscript
to review. I suspect the book has been
published by now. It is quite a remark-
able book and ends with a prayer that
this good lady wrote as she reflected
upon the seven children under her
care, some natural born, some adopted,
some white, some of other colours,
but all seven handicapped:

"Red and yellow, black and white,
They're at Wheeler's house tonight

and woven us into a family.

Stitch after stitch
Wete gone through testings,
Seen your love.
Been down to the pits and tou.ched

the stars.

Stitch after stitch
You've patiently and lovingly
Turned our sorrows into joys,
Our tragedy into triumph,
Our pain into victory,
Our braces into blessings.*`*

*Wheeler, Bonnie: Of Braces and Blew.