I am 31 and recently diagnosed with bicuspid aortic value following investigations for my high blood pressure(prescribed medication for this). I saw the cardiologist who advised there was leaking and to have yearly check ups to monitor this. I spoke about wanting to have a child in the next year or so and wanted to know my treatment options, if any. His guidance was to essentially “wait and see” and surgery could be needed in 5,10 or 15 years. He felt there was likely dilation and I am now waiting for a CT scan.
I feel quite deflated (excuse the pun) that there is no treatment. I think I need a second opinion but not sure of others peoples experience.
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Jsol21
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WEll, yes you will have to wait and see re. CT scan But I would still pursue having your baby if that is what you want to do. I probably had a leaky tricuspid valve for years plus, for sure a hole in my heart and had a baby.....no problems. I was blissfully ignorant of the defects. Clearly you will need monitored care and the hospital can offer this .My son was born by caesarian due to his reluctance to be born and this may be suggested for you .My baby was born 44 years ago and things have moved on since then .I do hope you achieve your dream.
Hi, I was just about to reply on the Heart Valve Voice forum, but, seen you've now posted on here as well. You should get some useful responses from members on here.
Unfortunately, you've fallen into the standard response for your situation from Cardiologists. It is essentially "wait and see" based on an annual Echo / MRI which will determine the severity of the problem, typically regurgitation. There comes a tipping point when you need surgery, but, when is different for each indivudual.
Obviously, you're quite young, although I'm in my 60's now I can relate to your position. As an adult, I started with reviews in my Mid-20's, but, I was 33 by the time it was decided to have my first Aortic Valve Surgery. Others will have it done quicker after diagnosis, but, I suspect they are a bit older and lived without knowing about it.
I cant answer the bit about having a family, but, hopefully someone else will, although from my perspective as a father, it didn't stop us just getting on as normal, with my eldest son being 2years old when I had that surgery.
In many respects, you need to get poorer, before you get better. In my case having it youngish was a godsend.
A bicuspid valve is how you were born, just means your valve has two propellers or leaf’s rather than three. I didn’t even know until I was 70 years old. I had a very active life with no heart problems. Millions of tennis matches, cycling round the UK, running before breakfast. So quite active.
So you don’t need any action on bicuspid.
A leaky valve is a diagnosis. If you are monitored, say yearly, then your cardiologists.will advise of any action required.
So please don’t be deflated. I would live my life to the full, no reason to hold back on anything
Ahh I can only imagine how worried you must feel. I was born with congenital heart disease and it caused bicuspid aortic valve and a few other issues. I think getting it later in life makes it harder because your old enough to understand it 💔. I will need valve replacement surgery eventually for my severe aortic regurgitation and moderate stenosis . Wish you all the best with everything and take care ❤️. Did your cardiologist say how leaky your valve is??
I am fused tricuspid which means my valve acts bicuspid. It was first noted in my 30’s and I have yearly ultra scan checks. I am now in my 60’s. It has not been a restriction to my life. I will apparently need a new valve in the next 10 years. I don’t worry about it.
I had an undiagnosed BAV when I had my twins (now 26) and it was only diagnosed 10 years later. I can never understand why it wasn't picked up sooner as I had been investigated for high BP for years. See what the CT scan shows as to the severity of the valve. If you are on yearly checks you are probably only mild or moderate. I was monitored for about 16 years before I needed the valve replacing.
hi I’m sorry you have received this news. I was diagnosed in my forties with a bicuspid valve and went on to 5 yearly echocardiograms. Last year it was discovered I had an aortic aneurysm which needed surgery and in January this year that was repaired and I had a new valve. They will not replace the valve until it’s necessary. When you have your scan they will have a much better idea of the plan and they will work closely with maternity services moving forward. I am convinced you will be able to move forward with your life plans and wish you all the very best
Hi, the best thing I did when I was diagnosed with a bicuspid heart valve was to call the British heart foundation nurses (contact details on BHF website). The are very reassuring and explain things simply and kindly. It may not seem so at the time (I was poleaxed by the diagnosis) but it is good news your valve has been diagnosed as you will now be monitored so that the surgeon can operate and replace the valve at the right time and fix the issue. The heart teams are incredibly good at their jobs and are based in specialist centres so the operation is very routine for them. It also may be many years before you need an operation and your doctors will check you with echos and MRIs at regular intervals. To see how things are developing. I am also on blood pressure meds as I was told it is important to keep blood pressure under controlbest wishes
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Despite the fact that you have a BAV, you should be able to lead a normal active life. (I ran 2 marathons in my 30s and didnt know I had a BAV. It didn't require replacement until i was 70). Wait for the echocardiogram measurements to indicate the need for replacement. Keep your natural valve for as long as possible but not if you become symptomatic. Avoid reaching the stage where your heart is being damaged. Also, every year of keeping your natural valve means you won't be managing your INR (assuming you would get a mechanical valve replacement). With annual echocardiograms, your cardiologist should be able to predict the need for replacement well in advance. Alternatively, you may never reach the stage where replacement is necessary.
We discovered my bicuspid valve at 56 and replaced at 60, just 8 weeks ago. I feel so fortunate that medical care is so good to monitor and then have the capability to do something about it. I am now working my way back into full activities and life. All very positive. Just need to keep on top of the monitoring; NHS is a little bit all over the place at the moment. In my experience you need to push. Most GP/ Consultant slots are too short to allow a proper conversation; you can be left feeling anxious after, particularly where things become complicated! All the best Julian
I'm with all the others here, I was diagnosed bicuspid 14 years ago, I hope to be getting my valve op in the next 3 months. I only stopped going to the gym and lifting weights back in Oct after it got worse. My one piece of advice, make a note of the date of any echos they do, a couple of times my yearly scan slipped a few months until I prodded them.
Hi there, sorry to hear your diagnosis, and I hope my story can help.I am 44 yrs, I have a 11yr old and a 7yr old. I was born with a bicuspid aortic valve, which was replaced April 2022, and I have a prolapsed mitral valve which is currently in moderate stenosis (with regards to this I am currently waiting to see what happens). I was not aware of any of my heart problems until 2021. I had been having serious symptoms for about 3 yrs by then.
My 11yr old was born prematurely due to pre-eclampsia (11 weeks early). I have since been told, this was highly likely to be due to my heart condition, but was also because I was born to pre-eclampsia and he was my first. My 7yr old was born at 37 weeks with no complications, totally normal. They were both born via c-section. My 11yr old is now totally fine. He gradually caught up with all his milestones and is a totally normal kid.
Bearing all this in mind I would still have children. If I had known about my condition before I got pregnant, my care would have been more thorough.
The doctors would have been able to take the correct precautions needed. And I would have been more aware of things that weren't right.
Don't t let this stop you having children , your still young, you may never need surgery, etc.
Hi, I understand your anxiety and concern but, as all the hearties have already well mentioned, "wait and see" is the best approach. In a way, you don't want to have surgery if you don't need it at the moment, since an aortic valve replacement is a major surgery and recovery is steep and requires patience and determination.
They spotted your issue and they will keep you controlled, which is all you might want and need now, likely on a yearly basis depending if you have a dilation and how it's looking. Unless the situation deteriorates, they will probably manage your condition with some blood pressure pills and perhaps beta blockers. I had valve stenosis and it was kept under control for years before they decided to replace my aortic valve in 2021 (I am 42).
Keep up the good spirits and try to focus on the good things that life will bring!!
know how you feel I was diagnosed with bicuspid aortic valve last August plus a dilated aortic root at 37mm. Straight on beta blockers and bp medication. Told scan every 12 months. Im 51 but then was 50 so had it all my life with no issues. So June this year rescan expecting things to have got worse, but no, root is 36mm it’s not shrunk but hasn’t got any bigger and the regurgitation and valve is exactly the same. I spent 12 months thinking my life was over. It’s not. I now get on with it and do what I want as I did before. Im no different today than before my diagnosis or even when I was 20. What I’m saying is don’t let it rule your life it’s not the end of the world. Honestly I’ve been through it and life absolutely goes on nothing has changed.
My husband found out he had a bicuspid valve last November 2022 aged 53 after experiencing chest pains while exercising .he has been told it is hereditary and our 2 boys need to be checked too .
My husband had a replacement heart valve on 3 July . He’s doing really well ,
Thank you so much for the replies, I didn’t realise I had any! I’m no further forward but due to see another cardiologist in November so hoping for more information. Thank you again
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