Help 18 month old diagnosis Aotic stenosis

[Justamum1]

Hello we have had a very emotional scary week and told our beautiful little girl has this heart condition severe and does not seem suitable for keyhole. We are very scared and looking for some reassurance from those who have experienced the same with their child. Our older child has been referred for a check and we are very scared

[Woodywoo36]

I'm so sorry that you had this scary news. I am not a parent of a child with the diagnosis but I live by Alder Hey hospital in Liverpool and,I know that they have an amazing paediatric Cardio team and I'm pretty sure a support group for parents. Give them a call and/or look it up on social media. Praying all goes well and becomes less scary xx

[Gill1026]

Hi. I was diagnosed aged 11 months with the same. That was in 1962, in 1974 I had surgery. I also had a mechanical heart valve in 2018. I worked for 46 years, had 2 children and tried to live a " normal" life. My advice is as parents always encourage your child to lead as normal a life as possible. Do not wrap the child up in cotton wool. They will learn as they grow older to live with CHD and know their limitations. Try to look for any support groups in your area. Good luck and ❤️

[Justamum1 in reply to Gill1026]

Thank you so much for replying this gives me so much hope 💗

[Toastcar]

hello, my daughter was diagnosed at 8 weeks with heart condition and was quite ill, needed lots of hospital visits and eventually bypass surgery . That was in 1991 she is now a lovely 32 year old with a healthy 7 year old daughter , I was only 20 at the time of the diagnosis and it knocked me for 6 , it is scary and you will be worried but seek support the hospital’s are fantastic, but these days ur have a lot of support online if you do searches . It will be ok and sending you lots of positive thoughts, find a helpline maybe the hospital you referred to , maybe call the children’s ward or ask at specialist hospital . Help is there . Take all support from friends and family , read a lot and do research as this is totally a condition your daughter can have a normal life with , take care , much love, Emma x

[Rosie1066]

I was born with congenital heart disease, aortic stenosis and bicuspid valve. In the 1950 s When I was a child open heart surgery didn’t even exist so no surgery for me. I wasn’t allowed to do any sports or swimming and my parents were told I probably wouldn’t live much beyond fourteen years old. But I did and I’m still here. Eventually had my aortic valve replace when I was sixty after leading a perfectly normal life style as I rebelled when I was a teenager. I married, had two wonderful daughters all before I had my OHS.

[Partner20 in reply to Rosie1066]

What a heartwarming and encouraging story.🙂

[Rosie1066 in reply to Partner20]

Thank you!

[Partner20 in reply to Rosie1066]

🙂🙂