Care Without Care (Chapter VIII)

8/14/2019 Care Without Care (Chapter VIII)

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Barbara Fisher

CareCareWithoutWithout

CareCareChapter

VIII

A true story

by and about

a young mother

who sought

health care

for her child.


2/27

Barbara Fisher

CareCareWithoutWithout

CareCareChapter 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.


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He had been born in March. They performed

the neurosurgery in June and it wasnt 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 babys room before I arrived home.

Ernie had asked why. She had said so that I

wouldnt 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


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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 youd meet in the park would

look first at his head, then at his hands, and last-


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ly at us. And they wouldnt say anything.

Children were much more direct. They would

always ask why his hands were that way. Theyd

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; Ernies mother could-

nt remember all the things he did when that age.

When the neurologists questioned us, it was

different from the proud, isnt-he-cute type of ques-

tions and answers. They were serious questions

duly noted in the casebook. They didnt 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


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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. Thats 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 cant rely on his clus-

tered digits. He uses his arm and back muscles to

enable him to pick up and grip things. Hes 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


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toys for him. He uses what other children his age

play with. In order for him to play properly, since

his fingers arent 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


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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 didnt know what to expect, but I had two

huge logs on both shoulders waiting to be rolled.

He didnt talk and he wasnt 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 hed 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 didnt know if another would be


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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 werent 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 Athelantiss 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 wasnt the murky, dismal feeling as up


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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. Thats important for the morale of the chil-

dren . . . they look better and they know it. And

theyre certainly more comfortable in things

theyre used to. And parents dont 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


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started unpacking his stuff.

The orthopedic-floor resident arrived. Despite

the fact that you have to have a preadmission

examination before theyll formally admit a

patient (to screen out communicable diseases

one child came in with chicken pox and infected a

whole ward) soon after youre on the floor another

doctor comes by to repeat the same procedure. Its

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 its 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 wed 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-


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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.

Hed have to remain in the hospital for a full week

after that then theyd change the dressing and, if

all looked well, send him home.

I never understood why they kept him so long.

They didnt remove the bandages for a full week.

As long as they didnt 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, its


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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


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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 wasnt on the

list for his floor. This was the second time they

had done that to us. I didnt 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


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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 foodapple 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-


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work and tutors them in areas where theyre weak.

Although youd think theyd 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 childs

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).


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They also got flip cards with pictures and English

words on them for him. This was during

Athelantiss 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.

Theres always a lot of disappointment on

Fridays when they know that she wont 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


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children and young adolescents.

There is constant noise on the ortho floor. The

childrens ward has a television hung from near

the ceiling so that the children in bed and those in

strollers can see. Its turned off at nap time and at

night when they have to go to bed. Otherwise, it

blares. Every childrens 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 arent stolen. In

that one room four televisions might be simultane-

ously playing four different stations.

Down the halls in the smaller rooms where the


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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 patients families and friends

ignore the posted signs saying please dont 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


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a front tooth. My mother was convinced that wed

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-

cians optimism when his first nights 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 hes 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 dont want to pick a fight with the lady

who controls what your kid eats when youre not

there.

We got a new tray with junior food. He hated

it He spurned the bread. And I cant 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-


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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 didnt like it. He wont eat it. He

throws it to the floor after squashing it up in his

hands.

He also didnt 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, hell adjust, but, to this day, the only way hell

eat hospital food is when its shrouded in fruit or

pudding.

One of the children who was there that first

time (I dont remember how old he was, about six I

think), wouldnt 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


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peanut butter and jelly sandwiches, alternated

with pot-roast and her thermoses filled with stew.

Now some of the children dont want to eat the

hospital food because their drawers are full of

candy, cookies, fritos, and other snacks. The other

children dont want to eat it, because its really

very bland.

I am convinced that theres 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 childs plate

labeled beef, chicken, pork, lamb, veal, liver, ham.

But its all the same animal. Because I always

taste what hes been given to see whether or not

hes being picky or right. And Athelantis is right.

It all tastes the same, kind of chewy and every


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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 dont want to believe that

theyd 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. Nofresh 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 wouldnt want to knock it. Its

a very crunchy cereal. But there are more nutri-


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food and worrying about whether or not hes eat-

ing.

After three operations theyve finally learned

one thing about Athelantis. When all else fails, try

yogurt. When I arrived one day, and they told me

hed have to be on intravenous feeding if he didnt

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 didnt have cottage cheese,

but they now have yogurt.

They also think Im strange because we spurn

lollipops. He doesnt like lollipops. His pediatri-

cian doesnt like lollipops. His dentist doesnt 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 onepatients, paraprofessionals,

aides, nursesthey all stand around with little

white sticks hanging out of their mouths.


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Theres 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

Athelantiss patches. Where they do the patches


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the skin is raised and almost spongy-looking.

Theyll 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.)

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Care Without Care (Chapter VIII)

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