Care

Barbara Fisher

Without
Care
Chapter
XX
 Barbara Fisher

Care
Without
Care
Chapter XX

© 1972 Barbara Fisher

Reprinted August, 2010
All rights reserved.
For information address
Ten Penny Players, Inc.
www.tenpennyplayers.org
First published by Avon Books
(a division of The Hearst Corporation)
 We went back to the hospital for a visit with
their neuro-ophthalmologist. It was a 1:30 P.M.
appointment. We arrived early. The doctor
arrived in the clinic at 2:10 P.M. Athelantis was
called inside at about 2:40. He began wailing and
I had to hold him while the doctor used the
lights to peer into his eyes. Both pupils were
responding normally to the light. The young doc-
tor had been wrong about that one. The left eye
hadn’t changed since the last visit. The right
optic disc still showed up as pale. Drops were
squeezed into both the baby’s eyes, while he
screamed and thrashed about. We had to wait
about forty minutes for the eyes to dilate. The
nurse on duty gave Athelantis a piece of cake.
The doctors had their own little refrigerator and
coffee pot for their breaks. They were in and out
all afternoon making coffee and eating.
The nurse vanished into an examining room
to help a doctor. A little old lady, very shriveled,
very old, wandered into the area looking for help.
She saw a practical nurse sitting in the waiting
room and beelined over to her.
The old woman was diabetic. She had had an
attack that morning and had been given treat-
ment in one of the other buildings in the complex.
Now she was in the eye clinic for another, differ-
ent examination, but she had been waiting an
hour, still hadn’t been seen, and had missed her
lunch. Could she go and get lunch without losing
her place, she asked the nurse. The nurse replied
that she was a patient in the eye clinic and
worked in another wing and couldn’t help the
woman. She told the woman to talk to the nurse
on duty. The old woman answered that the nurse
wasn’t there and the receptionists weren’t able to
help her. The practical nurse just sat and kept
saying, “I can’t help you either; I work in another
part of the hospital.” One of the young reception-
ists finally came into our area. The old woman
told her the story and asked if she could leave for
lunch. “Don’t you have any sugar,” she was
asked. No, she was expecting to have had her
lunch earlier, but her name hadn’t been called.
One of the resident eye people told the reception-
ist to get some orange juice. The cry went up
along the corridor from doctor to doctor. “Where’s
the orange juice?” “Who knows where the orange
juice is?” Probably next to the grapefruit juice
one of the residents said. “Can’t I leave for lunch
without losing my place,” the old woman kept
asking. “I’ll find the orange juice,“ the reception-
ist said, and went wandering up and down the
hall looking into different rooms.
Our doctor came out of the examining room
and bent down to look at Athelantis. “Just about
ready,” he said. “I’ll be with you in a few min-
utes.” By the time this exchange had passed the
old lady vanished. I never did find out if she got
her orange juice. But Athelantis was given
another piece of cake. He also fell asleep on a
sofa. Forty minutes later the doctor came back to
see us. We went into the examining room for
another screaming session. I had to hold
Athelantis’s arm flat with my elbows so I could
hold his lower eyelids with my hands. The doctor
kept peering with his various light instruments.
Then one of the residents peered, while
Athelantis screamed and sweated. Whenever the
doctor took a break or left the room to get another
instrument, someone, the nurse or a resident,
handed Athelantis more cake. It kept him quiet
between exploratory bouts. The examination
finally over, we released Athelantis and he went
running down the hall to find Ernest who had
been in the waiting room the whole time. He
refused to join us in the inner waiting room or the
examining area. I can’t blame him.
We went across the hall to the doctor’s own
office. “I don’t know why this has happened,” the
doctor said. He and the first resident who had
diagnosed the problem pored over the medical
record. They wanted to know if any of the other
eye people who had seen him through the years
had noticed anything that they had now seen. If
they had noticed, they hadn’t noted. There are
four possibilities the doctor said. The optic nerve
could have been weakened by the original pres-
sure; something could have rested on the optic
nerve during the first neurological pressure; there
could have been an increased neurological pres-
sure caused by another premature closing of the
sutures; or something could be causing the prob-
lem that was completely unrelated to Apert’s. He
said that he had no one to consult with at this
hospital since he was the only neuro-ophthalmolo-
gist and he really wasn’t sure of the cause. He
thought the left eye looked normal, but he wasn’t
too sure of that either. He said that in an aver-
age child they’d hospitalize him immediately and
run a series of tests, some of which could be risky,
but they’d probably be able that way to determine
the cause of the optic atrophy. Or they could
keep close tabs on him and see if anything devel-
oped, seeing Athelantis at two-week intervals.
How did I feel about hospitalization?
I said that Athelantis didn’t respond well to
hospitalization and I certainly didn’t want any
tests performed that were risky or could impair
his vision further. He said that ordinarily they
would hospitalize a clinic patient immediately,
because they often lose them otherwise, but in
this case, since I was intelligent, he was thinking
about tracking rather hospitalization. He wanted
to confer with the young neurosurgeon first. He
asked us to wait while he paged the other doctor.
By now it was four o’clock. The clinic waiting
room was empty except for Ernest, two reception-
ists, and Athelantis. We waited until four-thirty
for the doctors to return the page. The two doc-
tors talked endlessly, mulling over the possibili-
ties. They had received the x-rays from the other
hospital and the sutures remained open; it didn’t
look like neurological pressure causing the prob-
lem. They started talking about exotics, other
things that could possibly be happening to
Athelantis. I didn’t have my recorder with me. It
was still holiday season although post-Christmas,
and I felt nervous carrying it. I couldn’t afford to
replace it.
They both decided to track it. I was given an
appointment in two weeks with the neuro-oph-
thalmologist and one in four with the neurosur-
geons. The neuro-ophthalmologist said that he’d
see Athelantis at two-week intervals. I asked
him if he took private patients, that the neurosur-
geon thought he didn’t. He said yes he did, but it
would create such a hassle administratively if he
switched that we shouldn’t bother. That we’d be
seeing him in the clinic anyway and he’d be per-
forming the same type of examination so it wasn’t
necessary. Since Athelantis was so young they
tried to see him quickly, and we wouldn’t save
any time being a private patient. At four-forty-
five we were on the train going home.
I wanted another opinion. I had asked the
neuro-ophthalmologist to recommend someone we
could see. He couldn’t give us a name. I know of
no one I can suggest, he had said. I called Bob
and Fran. They called their surgeon at the hospi-
tal treating the other Apert’s baby. He said that
it was a rare specialty, but he had a friend in
medical school who was a brilliant neuro-ophthal-
mologist and he practiced in New York. I also
spoke to one of my neighbors. She had once
worked for a surgeon in another of our hospitals.
She called them and they recommended a neuro-
ophthalmologist and also said that it was rare,
but this doctor was fine.
I called the doctor recommended by Bob and
Fran. I wanted another New York opinion before
we left the city.
I called on Friday and was given a Monday
appointment. I was very nervous. Ernie had to
go back to work. His vacation was over and he
couldn’t come with me. Barbrah came. Our
appointment was for 3:30 P.M. Athelantis smelled
doctor as soon as he arrived and started to crank.
We were early. It was 3:15. The doctor’s 3:00
appointment hadn’t arrived and we were called
into his office at 3:20. He knew Apert’s Syndrome
and had treated the problem before. Athelantis
cried, but he was more pliable than usual. The
doctor’s manner with him was warm and friendly
and Athelantis responded well. The doctor
checked the pupils. Both responded properly. He
then squirted the eye drops. In fifteen minutes
the eyes were dilated and we were ready to con-
tinue. Athelantis lay back in a chair (similar to a
dentist’s), Barbrah held his head steady, and I
held the arms. There was no kicking or squirm-
ing. He rolled his eyeballs around trying to avoid
the light, but he wasn’t as frantic as usual. The
instruments the doctor was using were similar to
those at the other hospital, but they were stream-
lined and obviously newer. Not that newness
made them better, but they didn’t seem as formi-
dable. The examination completed, we let
Athelantis go outside to watch the receptionist
typing. The doctor said that it was his feeling the
optic nerve had been damaged by the initial pres-
sure at birth and for the first three months. He’d
seen signs that the pressure had caused a
swelling of the nerve, but that the swelling had
gone away once the sutures had been opened. He
said the color of the optic nerve was deceptive.
He had as patients older Apert’s, eighteen and
twenty, with the same symptoms and twenty-
twenty vision.
Apert’s was deceptive. He said that he didn’t
know what the sight was like in the right eye.
Because it wandered the vision in it most proba-
bly wouldn’t be as good as that in the left eye (the
left looked normal to him), but because of
Athelantis’s age he really couldn’t determine
what vision he had. He said that keeping the
sutures open was crucial. That if they remained
open, and the x-rays we’d had taken indicated
they were, his development should be normal. He
said that he’d want to track it to make sure the
optic nerves didn’t swell. And that he’d want to
see Athelantis in about four or five months and
would send us a reminder to make an appoint-
ment.
We talked to him about wanting to change
hospitals and told him about the hand surgeon
we’d be seeing the following week. It was his
feeling that the hand surgeon was the best possi-
ble. Barbrah and I were both relaxed with him.
After all that time hassling with doctors, I felt
faith and trust. He handled my son as a child
who had a problem, not as a specimen he wanted
to study. Athelantis’s response was more healthy
than I’d seen with the other doctors. He was
affiliated to the hospital to which we wanted to
transfer and that was a positive thing to me. I
didn’t really like the idea of going to one hospital
for hands and another for head. Our own pedia-
trician told us that when she was trained in
Europe it was to respond to the needs and health
problems of a total person not an arm or an eye or
a gall bladder. This neuro-ophthalmologist
seemed to feel the same; that his specialty was
neuro-ophthalmology, but that he was part of a
team. He wanted to talk to our pediatrician and
a neurosurgeon and the hand doctor. He expect-
ed they wanted to talk to him and, he assured
me, at the new hospital they would. He said that
one doctor, a pediatrician, assuming the pivotal
role would coordinate all the other doctors. He
was right. It was what our own doctor assumed
her role would be with the first hospital, but she
was never allowed to do that. She wasn’t one of
their own and they therefore ignored her.
If the hospital had told me, relax, put every-
thing into our hands, just be the mother, we’ll
take care of the healing. I would have become
more vigilant and militant. But the key here was
that I trust my own pediatrician. She really cares
about Athelantis. He’s her patient. And if the
change to the new hospital effectively enlists her
as part of their team, we will be able to proceed,
and I will be able to be the mother rather than
the advocate.
I called the pediatrician of the other Apert’s
baby in the morning. He assured me that he
would act as go-between for my doctor if neces-
sary and that everything would proceed with
care. He had spoken to the hand surgeon and
knew we were coming to meet him. He had also
been looking at our x-rays with the hospital
neuro-radiologist and comparing them with the
other Apert’s baby. Even though we weren’t his
patent, not yet formally transferred to his hospi-
tal, they were thinking about my child. That’s
important. Athelantis’s teacher said this hospital
appeared child-oriented.
I think it goes beyond that of patient-oriented
. . . I believe it goes to the core of this whole
book. One of the main reasons I wrote it. Good,
considered, competent health care is a right. A
dehumanized, poorly administered health system,
treating symptoms rather than people should not
be tolerated by anyone. Hospitals must be made
accountable not to business interests, but to com-
munities of people who utilize the hospital servic-
es. We can no longer allow the existence of the
hospital factor. Mending bodies (either well or
poorly) at the cost of breaking and cowing men’s
spirit is medieval and must be eliminated with all
the tools of a modern society – legislation, litiga-
tion, and, most importantly, organization.