Aortic Valve Regurgitation

[mama_bear18]

Today (21st May) my 4 year old son was diagnosed with Aortic Valve Regurgitation (leaky valve) after an echocardiogram to look into a heart murmur we didn’t know he had. I can’t seem to find anything about it on the website and looking to learn more and connect with other parents with children that have the same condition.

[Cliff_G]

Hi mama_bear18,

Sorry to hear this, it must be a worrying time for you, but doctors are very familiar with these issues and should be able to give you answers.

The BHF web site has a section on children's heart problems at bhf.org.uk/informationsuppo...

The Aortic Stenosis leaflet there may or may not be relevant - it deals with an aortic valve murmur caused by narrowing of the aortic valve, but there are other causes such as bicuspid valve which can often be associated with widening of ring holding the aortic valve. The echo should have told them which it is.

There are a number of Facebook groups, though I'm not sure which are UK. Search something like congenital heart defects - one is: facebook.com/groups/5468483...

Best wishes

[mama_bear18 in reply to Cliff_G]

Thank you so much for your reply, we’re now trying to find out the cause of this as there is no family history of heart problems. So he’s the first for as far back as we can remember. I’ll take a look on Facebook for groups. Stay safe 😊

[Cliff_G in reply to mama_bear18]

Yes, at his age it is likely to be congenital, but that is only genetic in a minority of cases.

[Cat04]

I can't help much specifically about children but if your son's murmur is due to a bicuspid valve then there is a lot of info available as 2% of the population are born with this condition. The echo should have determined the cause of the regurgitation/murmur. Do you have a follow-up appointment with a cardiologist who will explain the results of the echo?

The BHF nurses are available to telephone to talk through your concerns

helplines.org/helplines/bri...

[Nadeje]

Hi !This must be a worry for you! Poor little mite!

I don't really have any medical advice, sorry.

Just want to assure you that in this day and age your son will get excellent medical intervention, and his problem will be diagnosed and corrected.

I was born in 1950, totally unaware through whole of my life that I had bicuspid aortic valve, congenital disease. My Mum hasn't had no scans in her pregnancy back in those days, she passed away 23 years ago, completely unaware of my heart defect years before I have been diagnosed with this. I was 57 when I started suffering with palpitations, had ECHO scan and my problem was discovered.

I have been observed ,yearly scans etc..until last July aged 70 when I underwent AVR.

I am very well now, my new valve seems to be performing well.

And just to add...I lived my life to the full not aware I have a dodgy ticker.

Teenager during 60's , I have really lived a life of sex, drugs and rock n' roll !

As much as I know,nobody in my family had a heart issues.

Your little boy will be seen by experts and his heart problem fixed.

Wishing you good luck and hugs to you and your son. 😍

Monica

[21yearsold]

Hi mama_bear18 I have been newly diagnosed with a heart murmur and have an ECHO appointment next week. Did they let you know about the results straight away?