BiographyLeon was born after a normal pregnancy with no issues identified at the scans. He was born in 2010 in Pontefract Hospital. He is a much longed for child. About three hours after he was born, my husband mentioned to the paediatric doctor his hands and feet were cold and blue. The doctor examined him and said he heard a heart murmur and it would probably resolve in time.
Leon was restless and wouldn't take any milk, which resulted in him becoming dehydrated. He was taken to the special baby unit in the hospital. On further examination they pressed the panic button and blue lighted him to Leeds General Infirmary where an amazing team swung into action to save his life.
Leon was diagnosed quite quickly with Tetralogy of fallot (TOF) with overriding aorta, ventral septal defect (VSD) and patent ductus arteriosus (PDA). His left pulmonary artery is like a squashed straw on the scans, so it only functions at 25% of normal capacity.
He was kept in hospital for three weeks and we got home on Christmas Eve. He had several spells where he would go blue and struggle to breathe, mostly when he tried to feed, this resulted in him being quite thin and underweight. He collapsed at home in May 2011 and was rushed to hospital. We were hoping to get him bigger and older before his main surgery, but Leon's heart had other ideas.
Leon had his open heart surgery in June 2011 where he had his first big repair, at 7 months old. His second surgery was at 14 months old. The doctors attempted to balloon angioplasty his left pulmonary artery to make it bigger.
He is now 13. He loves books, gaming and has joined the Rock Club at school. He'd love to be able to join his Dad on stage in his band. We have spent the intervening years trying to keep him as healthy and loved as possible. He has regular heart check-ups with the team at LGI. It's really hard not to wrap your child in bubble wrap and not let them out of your sight when you are told they are potentially life limited. But Leon has found his own limitations and manages them with help from his family, friends and school.
He started to decline last year, his stamina is quite low and his fatigue is much worse. He is sleeping a lot more. He has been listed for his next open heart surgery this year, this will replace the right pulmonary valve and attempt to sort out the left pulmonary artery narrowing.
But for now he is holding steady and doing as well as we can expect.
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