The
doctor explained that according to the development graphs, her head should be a
certain size at a certain age. And if it
was not, there was a problem. Perhaps
her brain was not growing as quickly as it ought. Up until this time, eight months, she had
been gaining weight progressively. We
discussed the possibility of admitting her to a Toronto hospital for extensive
testing. Since we lived a long hours
drive away, we asked if she could he admitted that same day. He would see what he could do.
We
found our way to the hospital and went through the usual channels of
admittance. Why do they always take so
long? They gave her a hospital gown and sent us to a waiting area. Six hours
later, we were
informed they had a bed
ready. So we were escorted to the
allocated room and then began the second phase of admittance.
What
specific problems have you noticed? What
does she eat? Does she sleep on her
stomach or back? What does she not like? When did she laugh first? etc. etc. etc.
She
was finally settled in for what we thought would be 3 days of extensive
testing. We were wrong. She got pneumonia while she was there. She also cut her first four teeth in
hospital.
Towards
the end of the three weeks, the doctor was going to do an operation. They felt it was necessary to insert a shunt
from the brain to the stomach. I
understood that this would be a small tube to drain cystic fluid that was
putting pressure on her brain. The date
and time were set. We waited at home and
waited and waited.
The
doctor was supposed to call after the operation. He did not.
After waiting all afternoon by the phone, I called him at the
hospital. After a long wait on a. long
distance line, he finally came on and said "Oh, we didn't do the operation
this morning. We shaved the top of her
head and drained off some fluid and filled it with air and discovered there was
no pressure being put on the brain so we did not do the operation. You can pick her up tomorrow." And he gave us a time to meet him at the hospital.
Were
we so unimportant that he could not call us to tell us? Or was he just too busy?
We
arrived, at the hospital at the appointed hour and had to wait for him. After
awhile we were ushered into a small classroom with a blackboard.. The doctor preceded to quietly and simply
explain the type of brain damage Denine had.
How severe it was. And what he
would recommend that we do.
It
appeared that very early in my pregnancy, about 8 weeks, that the fetus
suffered a stroke of some sort, blocking blood vessels to the brain. As the organs were in the formation stage at
the time, there was a reduced blood supply to the brain that was just beginning
to form. He then drew a diagram of the
brain on the board and started to cut out pieces here and there to show which
parts had not formed. By the time he was
finished, nearly half the brain had been removed. The vacant parts were filled with fluid. They thought there was pressure but there was
not.
This
was such a very rare thing that there
was no documented record of it having
happened before. Her condition was so severe there was no hope
of getting better. His
recommendations were rather drastic. He
said, "If I could have my way, I'd take this child away and never let you take her
home." I think he wanted to spare us what he knew was
ahead. He was wrong.
We
gathered Denine and her things and prepared to leave the hospital. We had to pick up a prescription at the
pharmacy downstairs. Fortunately we had
enough money on us. It was not cheap.