Harvey was born weighing an impressive 8lb1oz. He was whisked straight to PICU and started on prostin then transferred to a specialist cardiac unit (glenfield hospital) where he had heart surgery a bt shunt the next day. His consultant spoke to me afterwards to say that Harvey would be having another procedure that day and he went back to theatre for an septostomy. He was such a little fighter, about 3 weeks later i was able to take my baby boy home. He thrived for a while but took a dramatic decline at 4 months old, so he was taken back to glenfield to be seen. His oxygen levels were very low and he was rushed to theatre with a collapsed lung and out grown shunt. He had a stent put in and was kept as an inpatient awaiting further open heart surgery which happened a few weeks later. He had a rare complication following surgery called chylothorax which meant he had to stay in longer and be on a fat free diet for 8 weeks.
For the next year Harvey thrived again he learned to walk at 18 months, but as soon as he was mobile he seemed to struggle with breathlessness a lot. He had numerous hospital admissions and procedures such as coiling of collaterols but evaded further open heart surgery until he was 2 years old when he had his fontan completion (last stage of pallative surgery). He developed chylothorax again and his oxygen levels weren't as good as hoped. Hes since had more catheters and a device fitted to close his fenestration. He is on high doses of warfarin to maintain an acceptable inr. Harvey is a beautiful happy little boy who loves life and his family. Hes always full of smiles, even in hospital he thanks the nurses for his medicine or when they give him a sticker for being brave. He is a cheeky monkey sometimes too but i wouldn't change him for the world x