BiographyOliver was born in 2016. We had numerous scans during pregnancy so knew that there would be a problem with his heart. During these scans we were told that he may be born blue, that he wouldn’t cry and even that he may not be breathing. As soon as he was born we heard his sweet little cry and we even got to have a little look before they took him to NICU. We eventually got to see him and were told that even though he'd done so well during the birth he was in serious heart failure. He was immediately put on lots of medications, along with iv fluids as his blood sugars were low. He also had a ng tube. He spent 4 weeks in NICU and, after taking a few bottles on his own with no tube feeds, we were allowed home.
We were home for a further 4 weeks but his feeding difficulties became worse. We were later re-admitted to the University Hospital of Wales as his heart was really struggling too.
He had open heart surgery in Bristol when he was 3 1/2 months old. It was a long 6 hours op but all went to plan and he recovered really well. Two weeks after his op we were transferred back to the University Hospital of Wales where, after a few days, cardiology discovered that the patch they used to close the hole in his heart was leaking and there was a strong possibility he would need the surgery re-doing. We were devastated, I couldn’t think of anything worse than him having to go through that all over again. We spent roughly the first 6 months of his life in hospital. He was discharged on numerous medications and a follow-up echocardiogram a few months later. We attended the appointment and a miracle had happened, the hole had closed on its own meaning no more surgery, we were amazed! Since his op he hasn’t experienced any further heart complications, fingers crossed he never will.
We discovered that Oliver had Kabuki Syndrome when he was 1 1/2 years old. We were sent to advanced genetics as his paediatrician was worried about all of the problems occurring with Oliver such as hypotonia, horseshoe kidney, developmental delay, intellectual delay, vision issues and he didn’t seem to be growing correctly. His diagnosis didn’t come as a shock, I was happy we had found a reason for all of his problems and that we could finally get the help that he needed.
He’s had numerous physio sessions in which he’s done amazingly well. He also wears glasses as he is short-sighted. He has a turn in his eye which is intermittent, he may need patching in the future. He has also received feeding therapy where he has become so comfortable around food.
He still has a long way to go and still relies on his peg but he tries so hard which is the main thing. There is also a strong possibility that he may need growth hormone injections as he is very small. We don’t know what the future holds for him, but today aged 3 1/2, he is doing really well. He continues to do well learning to eat and drink, he attends nursery five mornings a week and his teacher said he is thriving. He is such a sweet, loving, and kind little boy who deserves the world. I wouldn’t change him, he is perfect to me.
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