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Barbara Fisher

Care
Without
Care
Chapter
II

A true story
by and about
a young mother
who sought
health care
for her child.
Barbara Fisher

Care
Without
Care
Chapter II

First published by Avon Books


(a division of The Hearst Corporation)
in September, 1972

© 1972 Barbara Fisher

All rights reserved.


For information address
Ten Penny Players, Inc.
The plants were sagging when I returned
home. Otherwise, the loft remained the same.
Barbrah had arranged a leave of absence from her
job to help with the baby. Instead, she took care of
us. I felt quite displaced. She did everything; I
wasn’t even allowed to answer the phone. It rang
a lot. Barbrah admitted few visitors. Those who
came were stiff and formal, as if they were offering
condolences. Yet, there had been no bereavement.
Athelantis hung on.
After a week or so Barbrah went back to work.
Everything settled back to normal, more or less.
Ernie and I spent a lot of time deciding whether or
not to adopt a child. We had been all geared for
one and it seemed the right thing to do. We called
the city’s adoption services’ office. They were
interested in us until they discovered we had only
been married a year and a half. They wouldn’t
consider placing a child with a married couple who
had been married less than two years. They will,
however, place children with single people.
We called the hospital every day, learning only
that he continued to progress. Two weeks finally
passed. It was afternoon. The sun was beaming
strongly through the west windows. The pediatri-
cian called. Athelantis wasn’t going to die. She
and the staff radiologist had consulted many x-ray
books to discover documentations of similar cases.
They had found one that looked very close—
Apert’s Syndrome. One of a family of Crouzon dis-
eases, it meant the head, instead of being flexible
at birth, was fused or almost fused in certain sec-
tions. That was one of the reasons the labor had
been so long. The head wasn’t flexible enough to
allow for a graceful exit. The toes were webbed,
the fingers webbed; the children sometimes had
cleft palates. Some were retarded; others were
normal. it had been named relatively recently and
there were few recorded cases.
Medically, it was all very iffy. An operation,
timed correctly, could prevent retardation and
blindness. A section of bone is removed from the
cranium, a strip of cellophane inserted, and the
brain is given a chance to develop normally. It
sometimes works, not always, and few hospitals
specialize in the procedure. It was also possible
that the medical procedure would be successful,
but the child would be retarded anyway. The fin-
gers and toes would be operated on separately at a
later date.
The hospital didn’t want to keep him any
longer. He was considered a well baby. No insti-
tution wanted him. He was too young. We had few
options: take him home until he was old enough to
be institutionalized, or take him home and try to
find a hospital willing to operate and then take the
chance that it might not be successful. Of course,
we could have just left him there, abandoned him,
but that didn’t occur to us.
We found out later that many babies are aban-
doned when they are born with deformities and in
small hospitals. The parents often are disgusted by
the physical appearance, the hospital hasn’t had
similar cases or doctors who cared enough (or had
the time) to do the necessary research, and the
child is considered hopeless. Another child is aban-
doned, doomed to death or certain retardation,
because no one knew enough, or cared enough, to
risk the emotional upheaval of surgical procedures.
I cracked. I had been prepared for a phone call
telling me he was dead. We had been told that he
couldn’t possibly survive and the whole thing was
settled. And then, without warning, I was told he
would live for years, the condition was operable,
although not necessarily successfully, and that I
had to make an immediate decision. Thunck.
You set up defenses to protect yourself. You
live your defenses and they become part of your
reality. One phone call proves the fragility of the
whole frame.
There was really no choice. We collected
Athelantis the next day. The nurses dressed him
in the things we brought, and there he was—loud
and tiny in my arms. I was terrified. We took a
taxi home. Climbing the four flights to our loft, I
was convinced I would trip and fall. I didn’t. The
dog was curious about the bundle. What is the
first thing to be done . . . diapering of course. I
couldn’t remember how to fold a diaper. All the
lessons I had taken evaporated. I couldn’t remem-
ber where I had put The Book, either. I ranted at
Ernie until it was found. One beautiful thing
about Spock is his index. It was created for
moments of panic. Look for Diaper and find
Changing, and a picture. Successfully completing
the procedure, I had to cope with one of the cats.
Boutique was twelve years old and had never seen
an infant. She was hysterical. You can’t catch an
hysterical cat. She was flying from the walls.
Boutique has always been a climber. Even at her
age, she was getting as high as she could climb and
then leaping from furniture to rafter, shrieking
and hissing as she went. It was hideous, but we
finally managed to lock her out of the baby’s room.
We were under a great strain. Here we were
with this child, still not convinced he was going to
live, and we were waiting to hear from our doctor
as to where and when they would operate. We had
him at home, but still didn’t know if we would keep
him. If he were severely retarded, institutionaliza-
tion was best for him. At his age, it was impossi-
ble to tell what his intelligence was like. It is hard.
You grow more and more attached to a child, even
a funny-looking one, and all the time you know
that the familiar arrangement has every chance of
being temporary.
He cried a lot, it seemed, for no reason. We
now think that he probably had severe headaches.
But at the time, I just felt persecuted. It was hard
to like him. I began gradually to grow fond of this
stranger, but he was a lot of trouble. Nothing
pleased him. Ernest thought he was wonderful.
Little things became victories. My doctor came
to visit us and looked at him sleeping in his crib.
She said that retarded babies slept in foetal posi-
tion, often, but he was lying flat and normal. He
began to do all the things a child of his age is sup-
posed to and I kept looking for little signs to prove
his normalcy.
And we waited and waited to hear whether or
not a hospital was prepared to operate. The pedi-
atrician finally (after calling nearly every hospital
in the city) made contact with a neurologist who
said that his hospital specialized in Apert’s.
I called the hospital and made an appointment
to bring Athelantis in for an examination. Our
doctors had arranged for us to come through the
hospital clinic. I hated the idea of the clinic, but,
with the prospect of many operations, I knew we
could never afford surgeons’ fees. Yet, “clinic”
smacks of welfare, and that had derogatory conno-
tations.