Care Without Care (chapter Ii)

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 pediatrician 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 diseases, it meant the head, instead of being flexible at birth, was fused or almost fused in certain sections. 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 fingers 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 institution 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 abandoned 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 abandoned, 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 remember 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, institutionalization was best for him. At his age, it was impossible 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 position, often, but he was lying flat and normal. He began to do all the things a child of his age is supposed 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 pediatrician 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 connotations.