Bicuspid aortic valve - family screening

[Boneshere]

My DC has been diagnosed with a Bicuspid aortic valve.

I forgot to inquire about family screening, is this normally done in the UK?

I have had heart palpitations for as long as I can remember, but thought it was my anxiety. When I lie on my front I go dizzy and get tunnel vision. I didn't really think much of this until I looked up symptoms, of which I have a few.

DC dont see their bio dad, so it could be either side or not congenital.

I'm very worried now though, not only for my DC but for all my children.

You really don’t need to be so worried - 1 in 50 people have one, and complications are extremely rare. My DS has one. There’s a genetic link in approximately 25% of cases, almost always through the male line, and yes you can arrange for an ultrasound yourself by popping to your GP.

The doctor seemed to think DC will need surgery in the future, a valve is bigger than they would like, so while fine now he said is likely to lead to quicker wearing out.

I didn't ask hardly anything, I was like some idiot that lost use of their brain, tongue and mental capacity in that moment.

My other DC I have only just been diagnosed as autistic, it is just a lot in a few short weeks.

My DC with this is female.

Thank you for responding.

My other DC and I*

I was born with fallots tetralogy (missing pulmonary valve) and had open heart surgery when I was 4 and 6 years ago. I'm 35 and lived the most normal life and now have a 9 month old baby. Only advice I can give is be aware of endocarditis as those with congenital heart defects are more at risk.

Oh, I’m not sure about that then, I’m afraid - my DS’s valve is normal apart from the bicuspid doors so we’ve been given the likelihood of no concerns. You can access screening though through your GP.

Re surgery - this type of valve replacement is already being done as a keyhole procedure in the US & Canada. It is likely that by the time your DD is of an age to need surgery, it will be a relatively minor and non-invasive op here too.

www.southtees.nhs.uk/services/cardiothoracic-services/aortic-valve-replacement/