Jess' Story
Our daughter Jessica was born in May of 1992. How thrilled we were. We had a 3½ year old son, Matt and we felt extremely proud of ourselves to have produced a pigeon pair.
Jess was not a good baby. It turned out that she had a rare condition called Lamdoid Craniosynostosis. In other words, the fontanelle (Fontanelles are soft spots on a baby's head which, during birth, enable the soft bony plates of the skull to flex, allowing the head to pass through the birth canal. Fontanelles are usually completely hardened by a child's second birthday, and will eventually form the sutures of the neurocranium) fused too early and as a result she was probably getting severe headaches which caused bouts of incessant screaming. We had no idea what was wrong with her and it was so frustrating. We had her x-rayed and the hospital said there was nothing wrong. We eventually took her to a chiropractor who noticed that one side of her face was protruding over the other. Eventually a chain of events led us to a Neurosurgeon who took one look at her and diagnosed her immediately. He looked at the x-rays we had taken with us and was amazed that it hadn’t been picked up as the bones had calcified. One of the morals of this story – don’t always believe the “experts”. Had we left this situation, she would have been a vegetable by the age of 2 as her brain had no space to grow.
We were booked into the hospital in 5 days from our meeting with the Neurosurgeon. The operation which consisted of cutting the bone which had fused together and making space for the brain to grow appeared to go well although it was very traumatic seeing your 6 month old defenceless baby with her head bandaged up and whimpering just out of surgery. The nurses kept commenting that she didn’t appear to be recovering as she should. We didn’t know what to expect so weren’t too worried particularly given that we were in a ward with a child dying of cancer and another with a rare degenerative disease. We felt lucky!
Two days after her operation, the machines she was attached to started to beep madly and her eyes rolled into the back of her head. Suddenly around 5 medical staff were by her cot shouting things and trying to calm me at the same time. It was obvious they were panicked and had no idea why she was reacting as she was. She was given a lumber puncture, a cat scan and finally a blood transfusion after which she seemed to rally. This took around 48 hours and it was a distressing time for us all. We got very little sleep and we felt exhausted. It was sobering to realise how close we had come to losing her.
A week after the operation we were allowed home. We were so thankful to be going back to familiar surroundings with our precious daughter.
Things seemed to settle after that. She slept better as she obviously wasn’t having the blinding headaches. What a relief.
Things seemed to go smoothly for a while. She developed at normal rates. She commenced walking just prior to her first birthday. She spoke her first words on cue so we didn’t really suspect that there was anything wrong.
The only thing that I recall from that time which seemed a little unusual to me after having had our son was that she was incredibly self-contained and would entertain herself for ages. Matt needed constant entertaining whereas Jess would spend hours playing quietly with great focus.
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