All smiles from the big brothers
Over the next week Finlay struggled along, each day seeming to bring a new problem. His blood sugars swung wildly from hypos to the 20s (360 to 500+). In such a tiny baby a small bit of insulin makes a huge difference, getting the balance right was near impossible. He was growing, but only very slowly, his stools were fatty and colourless, suggesting he wasn't absorbing his food and his liver might not be working properly.
At six days old he had an ultrasound of his abdomen to see if his liver was ok. The good news was that his biliary tree (the plumbing that drains bile from the liver to the intestine) looked to be in working order but they told us he was missing his gall bladder! This hit us hard as we had gone from a child with a heart condition to one with diabetes as well and now we were being told there was a third issue. How much could one child take?
And there was still no real explanation for his inability to digest his food properly.
On day eight we were given a reason. The pancreas is responsible for producing insulin. It is also responsible for enzymes that digest food in the intestine. The fact that he was diabetic and wasn't digesting his food suggested that perhaps is pancreas was missing too!!
This was my lowest point. Our son had multiple heart defects and we were being told he was now missing two other organs. How could he survive? All I could think was the next meeting we would be sat down and told to prepare to say goodbye. We went back to where we were staying with our other two boys, trying to be as normal for them as we could. I can't remember much of that night but I doubt I slept much.
The next day we were ushered into a room with the neonatologist that had been looking after Finlay. "This was it" I thought. He sat us down and explained that he'd searched the medical literature. In his understated words Finlay "isn't on the first page of the textbooks". He then gave us a paper he had found in an obscure German journal. It detailed the story of a German girl born with an almost identical diagnosis to our son. No pancreas, no gall bladder, serious heart defects. At the time the paper was written this girl was 2.5yo. Still alive!!!
All of a sudden we had gone from desperation to hope. This little girl had given us more than we had dared hope for.