Barbara Fisher

Care
Without
Care
Chapter
VIII

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

Care
Without
Care
Chapter VIII

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.
 He had been born in March. They performed
the neurosurgery in June and it wasn’t until the
following April that he was admitted to the hospi-
tal for the first hand operations. He was thirteen
months old.
The ten months had passed quickly. We began
to feel more secure as parents. More like parents
than specimens being observed by the medical pro-
fession.
When tragedy strikes there are three options—
you can crumble, you can withdraw, or you can
fight. I fight because I refuse to allow anyone
ascendancy over my life. After I delivered, and
while I was still in the hospital, one of my neigh-
bors had asked Ernie whether or not they should
clear out the baby’s room before I arrived home.
Ernie had asked why. She had said so that I
wouldn’t have any unpleasant associations. Ernie
had said to leave everything alone. That there
would be other children. The room was there when
I got home. It was also ready when they finally
released Athelantis after two weeks. He was hor-
ribly spoiled. Several of the nurses in the hospital
had been pregnant. They doted on him and carried
him around everywhere. He expected the same
treatment at home.
The second time he came back from the hospi-
tal after the neuro operation he was again very
aggressive about being picked up and made much
of, but this time it was more for reassurance.
Knowing that we would have a respite before
the series of hand operations began made us more
relaxed about being parents. The continued neuro
outpatient visits were intrusions, unpleasant
things that we had to face, but we always brought
the baby home again and that made them
endurable.
At first before his hair grew back he looked
very odd, with the obvious surgical scar stretching
from temple to temple and a lot of stubble on his
head. Adults that you’d meet in the park would
look first at his head, then at his hands, and last-
ly at us. And they wouldn’t say anything.
Children were much more direct. They would
always ask why his hands were that way. They’d
then ask if it hurt. Sometimes they would want to
know if they could separate the fingers. We always
gave them real answers.
The most difficult part of the ten months was
the constant uncertainty about his progressions.
Was he doing things at the normal time and speed?
Were there any signs of something wrong? Since
he was our first we had no other child to judge him
against. According to my mother I had been a
paragon and infant prodigy; Ernie’s mother could-
n’t remember all the things he did when that age.
When the neurologists questioned us, it was
different from the proud, isn’t-he-cute type of ques-
tions and answers. They were serious questions
duly noted in the casebook. They didn’t always
believe me when I told them what he did. I some-
times think that parents should be given a cram
course in words that doctors use that would make
them more intelligible to us and we more believ-
able to them.
He turned over at four months, three weeks; he
sat up unsupported at five months, three weeks; he
stood in his crib at eight months and three weeks
and marched around the boundaries; he stood
alone at eleven months. To me these things were
perfectly logical, even though some of them
occurred early.
When he was born his back was extremely
strong. That’s the only positive thing they had told
me at the time. It would be assumed that those
skills requiring a strong back would be developed
early. His legs are also very powerful.
His arms and back muscles have become very
well developed because he can’t rely on his clus-
tered digits. He uses his arm and back muscles to
enable him to pick up and grip things. He’s very
thoughtful. He has to be in order to play with his
toys. He has no fingers to use for exploring tiny lit-
tle openings and attachments. We have no special
toys for him. He uses what other children his age
play with. In order for him to play properly, since
his fingers aren’t nimble, he has to think and care-
fully plan his activities.
Our pediatrician says that this is not uncom-
mon. Children with birth defects are forced to
think things through rather than experiment hap-
hazardly if they want to do the ordinary normal
everyday things.
He practices. He always has. When he first
began to turn over, he would repeat the activity
until he was convinced he really knew how to man-
age it. You could see his concentration and deter-
mination. He did the same thing with standing up.
The first time he pulled himself up to the top of the
couch he was delighted with himself. Instead of
staying on the couch, however, and lolling about,
he went back down to the floor and repeated the
maneuver. He repeated it until he had mastered
the technique of pulling himself up by , first,
anchoring his hands then heaving his shoulders
forward and lifting one leg up high. The weight of
his upper body and his anchored arms supported
him until he was able to hurl his other leg after
him. He has no fear of heights. He hooks his arms
over and around and through whatever can sup-
port him and up he squirrels.

I was very worried about the first hand opera-

tion. I didn’t know what to expect, but I had two
huge logs on both shoulders waiting to be rolled.
He didn’t talk and he wasn’t walking. I worried
about whether or not Athelantis could be able to
make his wants known . . . and whether they would
bother trying to understand him.
He was crawling and he hauled himself about
in a walker. He was no longer an infant. He was
busy and moving about. I knew he’d be miserable
in a crib or playpen.
We were continuing with the hospital because
I had grown used to it. I knew the problems with
this hospital. I didn’t know if another would be
any better. And I wanted to get this all over as
soon as possible. I was afraid that switching hos-
pitals would mean more delays.
Originally, the neuro people had told me that
all the operations would be over by the time he was
five or six. The ortho people, though, said that
they wanted to operate at two-month intervals and
that the whole thing (baring repeated operations if
the limbs weren’t growing straight and had to be
re-operated) could conceivably be over by the time
he was two-and-a-half.
So here we were following one of the pink
ladies to the ortho floor. It was Saturday, 11:00
A.M. On weekends visiting hours extend from ten

in the morning until seven at night. I had packed

a thermos of coffee, and lunch things into the car-
ryall that also had all of Athelantis’s clothes and
toys. Everything was marked with his name.
It was brighter and sunnier on the ortho floor.
The curtains were parted, the blinds were raised,
and there wasn’t the murky, dismal feeling as up
on neuro. There was also a telephone on the floor.
The children were up and running or rolling
themselves through the halls. Children on crutch-
es are very dangerous to pedestrians. They glide
quickly, stretching the crutches as wide as they
can reach, and pulling themselves along. Their
bodies are huge pendulums swinging fore and aft
of the crutches.
The older children on stretchers rolled them-
selves down the halls by pushing the wheels and
palming the walls. Some of the children were
wearing hospital clothes: the others were in their
own garments. On ortho, they can wear their own
things. That’s important for the morale of the chil-
dren . . . they look better and they know it. And
they’re certainly more comfortable in things
they’re used to. And parents don’t have to put on
robes before touching their children, which makes
the parents more relaxed.
The older children were getting ready to go see
a movie. Athelantis was assigned a crib and we
started unpacking his stuff.
The orthopedic-floor resident arrived. Despite
the fact that you have to have a preadmission
examination before they’ll formally admit a
patient (to screen out communicable diseases—
one child came in with chicken pox and infected a
whole ward) soon after you’re on the floor another
doctor comes by to repeat the same procedure. It’s
an amazing waste of manpower. Within the same
few-hour span, two doctors have to check ears,
eyes, nose, throat, and respiratory, just the basics.
But it’s routine.
Ernie called the nurses on the ortho floor mini-
nurses because most of them were short and very
slender. They were also very young The surgeon
who was going to perform the operation arrived.
We had met him the first time we’d been to the
ortho clinic. This first operation they were going to
do on the right hand. They wanted to separate the
cluster of four fingers by cutting straight down the
middle so he would have a thumb and two double-
sized fingers. They also were going to cut through
the webbing on the thumb in order to give it more
mobility and make it longer.
During the procedure they take a skin graft to
complete the plastic surgery. This would come
from his left thigh. The general rule is to operate
on one hand and take a skin graft from the oppos-
ing thigh.
They hoped to operate the first of the week.
He’d have to remain in the hospital for a full week
after that then they’d change the dressing and, if
all looked well, send him home.
I never understood why they kept him so long.
They didn’t remove the bandages for a full week.
As long as they didn’t begin to smell and his tem-
perature stayed within the normal range, he was
provided with no special medical treatment. I
could just as easily have tracked his temperature
and had him recuperate at home. But their policy
was to keep them a full week. Perhaps if you have
a lot of children and an outside full-time job, it’s
just as well. But for us, it made life harder.
Because we hated going to the hospital and he
hated being in it.
During that visit, Athelantis began to develop
his eye for the ladies. A very pretty little blonde
child, one month younger than he, was also in for
surgery. She had been born with an extra thumb
and it had been removed.
Athelantis liked her a lot. He used to walk
after her, pushing himself in his walker. She was
already toddling by herself. He demanded that
when she was in a stroller being pushed up and
down the halls, he be put into a stroller and simi-
larly promenaded.
Once when I arrived before her parents, I
found them both in strollers in the ward.
Apparently, the nurses’ aides had been pushing
them. They both yelled for immediate attention.
It is very hard pushing two strollers simultaneous-
ly down a narrow hospital corridor filled with ado-
lescents on stretchers, children on crutches, and
stretchers piled high with clean laundry waiting to
be sorted.
The first ortho operation went very well. They
did everything according to plan. There were no
complications in the operating room and it was
lovely. When they brought him down from the
recovery room, he was already beginning to wake.
Our only jolt had been upon arriving at the
hospital to discover that his name wasn’t on the
list for his floor. This was the second time they
had done that to us. I didn’t yell this time. We had
them call upstairs and the nurse confirmed the
fact that he was indeed in recovery. They had mis-
spelled his name, however, and placed it backward
on one of the admission sheets so that it had
become Perry Athelantis who was in surgery.
We had them change the records and went
upstairs. He was hooked up to the intravenous
machine and struggling to get free. He loathes the
I-V. He quieted down when we put him on my lap,
I-V tubing and all. One fantastic thing about ortho
is how quickly the children are up from anesthesia
and ready to eat. He was brought down shortly
before the children received their dinner trays. By
the time the other children had started to eat he
was yelling for food—apple juice, clear soup, jello,
and ginger ale. He ate well. The surgeon came
down and told us how pleased they were with the
whole procedure. I was pleased because the whole
thing had been progressing so smoothly.
The week remaining before they changed
bandages dragged on. It always does. Certain
aspects of the ortho unit are very impressive and
make things a bit easier. The playroom is exactly
that. Tumbling mats, toys for all ages, books,
miniature sinks and stoves, strollers, walkers, all
the things children need. Children from the whole
floor congregate in the room.
Every day the older children have class there,
too. Some of them are hospitalized for long periods
in neck, back, and leg casts, braces, and pulleys.
The teacher keeps them up to date on their class-
work and tutors them in areas where they’re weak.
Although you’d think they’d be bored by the hospi-
tal and welcome the classes as diversion, they
seem to hate them just s much in the hospital as
they do on the outside.
Some of the older children even hide from the
teacher. One girl hid (successfully, too) while
prone on a very long stretcher. She covered herself
over with a blanket and was ignored for quite a
while.
They try to vary the teaching to the child’s
individual needs. One little boy entered the hospi-
tal speaking no English. They decided that he had
to learn because none of the nurses spoke Spanish,
few of the children did, and he was going to be in
the hospital for some time. They felt that it would
be lonely for him without speaking any English
and slow him down in his schoolwork. Even those
workers who did speak Spanish began to speak
English to him (except when it was obvious that
translations were crucial to his understanding).
They also got flip cards with pictures and English
words on them for him. This was during
Athelantis’s second operation there. By the time
we returned several months later for the third
operation, he was speaking English very well.
In addition to the teacher, a recreational ther-
apist comes in every afternoon to teach the chil-
dren simple handicrafts: mosaics, plaster molds,
lanyard weaving, poster painting. She also plays
the piano and the children sing and dance and
really enjoy her. As soon as they see her arriving
they begin to pile out of their rooms and rush down
to the playroom. The older children are often there
waiting for her arrival.
There’s always a lot of disappointment on
Fridays when they know that she won’t be around
all weekend. But on Saturdays they all go to the
movies.
Several evenings during the week volunteers
(teen-agers from the community) come around
with stories and games and they also play with the
children and young adolescents.
There is constant noise on the ortho floor. The
children’s ward has a television hung from near
the ceiling so that the children in bed and those in
strollers can see. It’s turned off at nap time and at
night when they have to go to bed. Otherwise, it
blares. Every children’s program is seen. They
start with “Sesame Street,” and then flip channels
to other programs during the day. Sometimes dur-
ing the soap-opera peak period, when the nurses’
aides are in the rooms with the children, and are
bored, they tune to the tearjerkers.
All the babies and young children are put in
the same room. The infants and babies make do
with the ward television. The older children, how-
ever, often come equipped with their own Sony.
The fathers bring chains and attach them to the
bedposts so that the televisions aren’t stolen. In
that one room four televisions might be simultane-
ously playing four different stations.
Down the halls in the smaller rooms where the
older children and adolescents are recuperating, in
addition to the wall television each child has his
own, chained to the bed, playing simultaneously
different stations. The adolescents often also come
equipped with portable radios and cassette tape
recorders. These are also always on.
One of the most remarkable things, however, is
that despite all the incredible jumble of noise,
when the floor pay phone rings, every adolescent in
the place is aware that it might be for him or her
and waits to hear a name called. Some of them
spend their lives attuned to the sound of the ring-
ing telephone.
On ortho the patient’s families and friends
ignore the posted signs saying please don’t bring
food to the patients. People ignore similar signs in
zoos. The very adept are able to sneak whole piz-
zas past the guards downstairs. A store close-by
does a booming business in tubs of fried chicken
and fried shrimp and potatoes. At this point,
Athelantis had only one pathetic little specimen of
a front tooth. My mother was convinced that we’d
have to have him fitted for full plates.
He was eating and enjoying many flavors of
mush at home; I was not impressed by the dieti-
cian’s optimism when his first night’s tray includ-
ed very large pieces of meat, chunks of vegetables,
and the inevitable slab of white bread and butter.
I went to the dietician and requested baby
food, or at least junior food. She looked at me and
said, “But he’s thirteen months old.” “Yes,” I said,
“but he has no teeth.” How was he going to chew
the meat? “You should have specified baby food,”
she said. “I did,” I countered. I controlled my tem-
per. You don’t want to pick a fight with the lady
who controls what your kid eats when you’re not
there.
We got a new tray with junior food. He hated
it He spurned the bread. And I can’t blame him.
Athelantis is a big bread eater. He loves bread.
Whole wheat, sourdough-soy-enriched, rye, oat-
meal, corn, soy-enriched French . . . and occasion-
ally freshly baked onion rye from the Jewish bak-
ery near where my mother lives. He had never
encountered American-style factory-produced
white bread. he didn’t like it. He won’t eat it. He
throws it to the floor after squashing it up in his
hands.
He also didn’t like the meat or vegetables the
way they were presented to him. We found that
the only way we could get him to eat anything was
to take pureed fruit, chocolate pudding, or ice
cream and mix it in with the mashed potatoes, veg-
etables, and meat.
It was his first time in ortho and I figured,
well, he’ll adjust, but, to this day, the only way he’ll
eat hospital food is when it’s shrouded in fruit or
pudding.
One of the children who was there that first
time (I don’t remember how old he was, about six I
think), wouldn’t eat all day until is father arrived.
I never met his mother; she was too busy staying
home and cooking for this kid. He lived on her
peanut butter and jelly sandwiches, alternated
with pot-roast and her thermoses filled with stew.
Now some of the children don’t want to eat the
hospital food because their drawers are full of
candy, cookies, fritos, and other snacks. The other
children don’t want to eat it, because it’s really
very bland.
I am convinced that there’s a special type of
animal, four-legged, very hairy, with prolific breed-
ing habits. This animal is kept secret, hidden in
the bowels of the earth near some little known air-
port. Periodically members of this special herd are
put down, slaughtered, frozen, and shipped to this
very hospital in which I place my child. And after
stewing, roasting, frying, poaching, broiling, and
skewering, this animal appears on my child’s plate
labeled beef, chicken, pork, lamb, veal, liver, ham.
But it’s all the same animal. Because I always
taste what he’s been given to see whether or not
he’s being picky or right. And Athelantis is right.
It all tastes the same, kind of chewy and every
piece is the same cubicular size. And it all smells
the same. The color is uniform, too. The gravies
are different. They try to be very clever about the
gravy. But it all comes from the same animal . I
know it.
And with the nameless beasty they serve white
rice. Dry, tasteless, little kernels of non-nutritive
white rice. Sort of pearlized. Kinda reminds you
of minute rice, but you don’t want to believe that
they’d go that far. And always a neat little trian-
gle of pasty white buttered bread.
Fresh fruit in the hospital means a banana.
Never an apple or a peach or even a piece of
pineapple or orange. No—fresh fruit is banana.
The rest are canned in very heavy syrup. On
Saturday morning I arrived before they had time
to sweep up the breakfast debris. And I found a
greatly advertised wheat cereal (that shall remain
nameless) but shaped like one very round letter of
the alphabet. Now I wouldn’t want to knock it. It’s
a very crunchy cereal. But there are more nutri-
tious, even more delicious, ways of restoring a
child to health.
One mother, after watching her child refuse all
food except milk for several days, cried plaintively,
“How long can a child survive without eating?” For
even though you watch your child refusing the
food, the nurses always tell you—that Perry kid,
never have to worry about him, eats like a trucker,
cleans up his plate every meal. Yet the minute I
arrive he grabs for my straw carryall and tri-
umphantly hauls out the cheese and apples and
peanut butter and jelly on whole wheat.
I asked someone about the diet once and was
told that it’s the standard basic American-type
menu. Either the whole country is completely mal-
nutrieted and ready for the farm or maybe those
dieticians aren’t back there cutting up that meat in
cubes. Maybe they’re really busy with hypos full of
vitamins injecting every last grain of white luster
rice, and cheery little o’s. But at eighty –five dol-
lars a day I sort of resent having to bring my kid
food and worrying about whether or not he’s eat-
ing.
After three operations they’ve finally learned
one thing about Athelantis. When all else fails, try
yogurt. When I arrived one day, and they told me
he’d have to be on intravenous feeding if he didn’t
eat, I suggested cottage cheese and yogurt, his
favorites. The look of incredulity was such that I
might have said martini, very dry, twist of lemon,
and on the rocks. They didn’t have cottage cheese,
but they now have yogurt.
They also think I’m strange because we spurn
lollipops. He doesn’t like lollipops. His pediatri-
cian doesn’t like lollipops. His dentist doesn’t like
lollipops. I carry around dried fruit for him, gra-
ham crackers, and the inevitable little packages of
Swiss Knight. But the playroom of the hospital is
liberally stocked with lollipops. At lollipop hour
everybody gets one—patients, paraprofessionals,
aides, nurses—they all stand around with little
white sticks hanging out of their mouths.
 There’s also a juice break. My kid likes orange
juice, apple juice and an occasional sip of the
grape. The biggest winner on the cart though is
the liquid lolli, Hawaiian Punch or, when they
have it, Koolaid.

The week was finally over. They disrobed the

hand, pronounced the healing uneventful, and
rebandaged. They took the dressing off his thigh.
They wanted it exposed to the air so that it could
heal more quickly. It was a very neat square
patch, dead center, outside of the left thigh, and
bright red.
As it healed, the color began to fade until it
started turning his own normal creamy beige. The
problem is that Athelantis is a black baby. Blacks
often have a tendency to heal differently from
whites. The scar tissue ridges instead of healing
flat and gradually integrating with the rest of his
skin. And the tendency is pronounced in
Athelantis’s patches. Where they do the patches
the skin is raised and almost spongy-looking.
They’ll always be noticeable.
We were given an appointment to return to the
orthopedic outpatient one week later for a bandage
change, and then we were free.

(To be continued.)