In 2013 we found out we were expecting a baby boy, in our 20 week scan they noticed that something wasn’t quite right. They couldn’t find our baby’s stomach. We were told that this could be a sign of something more or it could be just what it was, what it more than likely was that there was something blocking the babies oesophagus and that when baby was born a quick suction or at worse an oesophageal repair.
Naturally worried we were given scans every week. We felt well looked after by our consultant. 9 weeks before baby was due there were no movements, we rushed to the hospital. Too much fluid had made it hard for our baby to breath, we were having our baby now. James Reilly was born on 24th April 2014, a tiny 3lb 14oz. He underwent major surgery at only 2 days old, he was put on a paralysing drug because of the nature of his surgery. When time came James didn’t waken as quickly as they thought he would and they started tests.
A neurologist came to see us and told us that James brain had not developed and he would most likely be severely developmentally delayed. We were devastated for our boy but we knew with lots of love he would be happy and the power of love can do so much. James became more responsive and did waken.
So two weeks later when the metabolic consultant asked to have a meeting with us I thought there is nothing he can say that would be worse than what the neurologist had said.
Wrong. Non Ketotic Hyperglycinemia, NKH, “a short life of immeasurable pain through seizures and a vegative state with no idea of what was happening around him.” That’s what we were told. Our boy excelled, he breathed on his own first time, he drank, he cried, he smiled, he was prefect.
At 4 months old James’ seizures started, they took everything from him, he could no longer drink his bottle, he stopped crying and smiling, we told the hospital to get us ready, we wanted to go home, we wanted to be a family together. Our surgeon recommended Robin House, we went there, we were together, we were a family, and we were well looked after. Then we went home. It was scary and wonderful all at the same time. James’ seizures changed and became more frequent, we tried different seizure meds but they were relentless.
When our boy was 9 months, 3 weeks and 6 days old we lost him.