My 6year old has just been diagnosed with a leakin heart valvle and we have been told he will need open heart surgery in the future to correct or replace the valve. Iv personally never heard of this before and I'm very shocked as he's a fit and well child and we had no idea he had something serious going on. I'd love to speak to other mums who's children have this and how they are and what to expect
My DGS has the same. It was diagnosed before birth when DD had the scan. They didn't expect him to live, or best case surgery at birth. Very lively, healthy 5 year old boy. Open heart surgery in spring. They have been told the surgery will completely cure it. It's the right side valve.
Hi OP, I don't have children with this condition but just wanted to write a few lines in an attempt to reassure.
My ex husband had aortic valve stenosis. The valve would pump blood out and it would rush back in. He had it since childhood and had many procedures. He finally had a replacement valve at age 31. He then went on to run marathons, climb mountains and even walked the freedom trail from France into Spain. I was and still am immensely proud of him. I'm sure your boy will be fine with the right medical care.
My DD (5) was born with a heart condition called truncus arteriosus. She had open heart surgery at 9 days, and we are expecting her to have a second surgery with in the next two months. Amongst other things, one of her valves is leaking significantly, and the artery will be replaced with a mechanical one.
Despite needing surgery soon she's fairly well, does swimming, gymnastics and a park run every week. We do notice she gets tired more quickly than other children and some times she suffers from heart palpitations. I can't add any experience with what life is like post surgery at this age, she was so young before I'm expecting the operation and recovery to be very different this time! I do however want to say I understand how overwhelming and difficult it is to have a diagnosis like this, and to live daily knowing your child has a heart condition. It has felt a lot of the time we are feeling our way through the dark with balancing health worries, and allowing her to be 5. The only thing I can confidently say is don't be afraid to be pushy with the hospital to ensure appointments and scans take place when they should, everything takes so long otherwise.