Denine: Why is She so Stiff

            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.