Unicuspid aortic valve

[Katie1304]

Hello,

my 5 year old son has just been through surgery to replace his ascending aorta which was hugely dilated. Thankfully the surgery was a success and he is recovering well.

We were told from when he was a baby he had slight thinning of his aortic valve and there were only 2 cusps present (bicuspid). However, after surgery they have told us he now has 1 cusp (unicuspid).

I was wondering if anyone had any experience of this as there is very little to read up on. He has no other known conditions and the valve is only mildly stenosed.

We see his cardiologist again in 4 weeks for his post op appointment. I would just like to know more about it before then.

Many thanks in advance.

A worried mum....

[Sallys77]

Hello Katie.

I’m unable to give you any advice, however empathise with you. I wasn’t diagnosed with my heart condition until 23. As it’s a hard thing to diagnose. But can’t imagine having a child diagnosed and treated for a serious heart complaint.

I’m sure your son is in very safe hands.

Write everything down that’s worrying you so you remember when you see his surgeon.

Children heal quickly. Sending lots of healthy vibes your way. Sal . X

[gal4God]

Stop panicing and get him though this. I’ve had panicing family and never helped me though heart ops so still struggle as an adult. I don’t want that 4 ur son.

[Katie1304 in reply to gal4God]

I thought this was meant to be a support group? Somewhere to get advise and support? I was looking for information on my sons heart problems, not being told to 'stop panicking' please don't comment if it's going to be negative.

[IanGordon]

Katie, hi. This is a community with a cross section of society with a range of experiences, knowledge and widely differing perpectives on heart related problems. Realistically, we cannot be prescriptive about the type of response we would like but we do have the option to take or ignore any advice or information posted. Dont be dIstracted by the trivial.If it's medical advice then your cardiologist / surgeon will provide definitive answers to your questions. The wait will seem relentless but it's part of the landscape, I'm afraid. Support is what this group is all about so do continue to post as it can I believe give enormous benefits.