I am looking for another parent or individual who has a child or has themselves been diagnosed with Functionally bicuspid valve with mild stenosis and mild regurgitation from a young age.
I live every day in fear that my son will not live to see the next day. I understand the complications of operating on such a young person. I just find the logic hard to swallow, let my son progressively worsen until the doctors intervene.
Is this a life sentence? Do I need to be preparing myself for something awful to happen to my son?Can he just slip away in his sleep or is this condition not linked?
How did you cope day to day? We have been doing well taking a day at a time. I just don't know how much longer I can continue living life in fear. Each morning my child walks into my bedroom I am thankfully to of been given another day.
Any advice or reassurance will be so greatly appreciated.
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Mother2017
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I'm not in the same situation in you in that I don't have a child with bicuspid aortic valve. However, I was that child fifty years ago, but it went undiagnosed until 2021. If it had been picked up earlier my situation would have probably been no different. Until stenosis is severe they tend to monitor.
I was blissfully unaware that I had a heart defect and lived a totally normal life. I'm sure that your son will too. He has a medical team looking out for him and we have amazing heart surgeons and consultants in the UK 😊
This is so reassuring to hear. I am so sorry that you had to go through this too. I pray he will follow in your steps and continue to live a full life.
There's no need to be sorry, I'm one of the lucky ones. We need to raise awareness of heart valve issues. So many are undiagnosed, my Dad was one of them.If you are on Facebook then maybe consider joining UK Aortic and Heart Defects Pre and Post surgery. So much support and reassurance from those who have had surgery for those waiting
Amazing thank you I will look the groups up now. We are trying our best to spread the word we are holding a fundraising event in December to raise funds and to spread awareness. I am so sorry your Dad was undiagnosed.
Heart valve issues can often be picked up by listening to the heart with a stethoscope. The consultant said to me.... You've got a right heart murmur there. Has nobody ever listened to your heart. This was at age 54!!My Dad was sent for ECGs and x rays which don't show valve issues and it got missed.
Breaks my heart, so I'm spreading the word to try and stop that happening to others.
I'm currently off Facebook, but will be back in the group when I reactivate my account.
Ahh I understand your worried but quite a few of us have this congenital defect. I have it and have severe aortic regurgitation and moderate stenosis and will eventually need valve replacement surgery in the future. Has your sons cardiologist said when they will intervene medically?? I had a procedure when I was 13 on the valve because of the stenosis and I'm now 25 and still going strong 💪🏻. Has he got any symptoms with his bicuspid valve or is it just the thought of it being there and the worry of it all 💔. Your son should get checked every 2 years at a specialist hospital I was with Great Ormond Street till I was 17 and there amazing! Still go there for MRIs x wish you all the best and hope this is of some comfort and reassurance to know your son isn't alone in feeling like this ❤️. Keep us upto date on his journey! 😃
I have probably had congenital heart disease all my life but it was not picked up until I was c 70....now in 80s!I had a hole in my fixed then and they found i had other problems including a non functioning tricuspid valve.Heart is mis shaped too! Nobody picked any of this up over the years. Travelled widely , lived in countries with good health care, had a baby etc. so I think with all the good help available now your son will likely live a good and long life.
HiYes me too congenital bicuspid aortic valve I'm 67 just been diagnosed, had 2 babies now grown men,4 grandchildren a very full life and most of my symptoms were misdiagnosed as Im type 2 diabetic with chronic migraines
Now someone's finally noticed my heart lol
Sending you every ounce of support we can
This is a brilliant group and so are the FB groups mentioned ❤️
I saw your post but did not have the answers but was hoping others would and I am so pleased to see your replies
I really feel for you please keep using the Community there are some wonderful people with some really good advice and I hope it will help even just a little bit with coping
Hi, I was born with congenital heart disease just the same as your son ie bicuspid valve, mild stenosis and mild regurgitation and apart from not being able to do sports I lived a perfectly normal life as a child. As a teenager I rebelled and did everything I was told not to do and lived a perfectly normal life, got married and had two kids. Eventually the stenosis went to severe and I eventually had open heart surgery for an aortic valve replacement, aged 60. I still have the mild regurgitation and I also now have an ascending aortic aneurysm but this is being monitored. I also now suffer from AF and have recently had a pacemaker.
My daughter was born in 1988. At 8 weeks we found out she had a bicuspid valve with severe aortic stenosis. She was operated on at Bristol children’s hospital at 10 weeks. She was home after 10 days. She grew up to be a very healthy child. She knew her limitation when it came to sport and didn’t push herself. She did very well in school and university and is a very successful accountant. She Trained with a top firm in London. She has since married and has too beautiful little boys. She needed further surgery before having children and had the Ross procedure when she was 29 again in Bristol. She is still seen annually for an echo.
I totally understand your fears and concerns. I have been there all her life but you will learn to live with it. Hope this post gives you some encouragement.
I am 64 and have same condition with moderate regurgitation. First diagnosed in my 30's. Lived a normal life. Get annual checks incl an echo cardiogram.
Hi.My son was diagnosed with a bicuspid aortiv valve when he was 1 yr old. He was given yearly echoes and he made it to 13 before the stenosis and regurgitation progressed from mild to moderate. At 14 it moved to moderate to severe but he generally remains asymptomatic so they have seen him every 6 months for the past year and a half. They now do an mri too as it gives more detailed look at how his heart is coping.
I do understand your worry as a parent but I cope by trying to put it to the back of my thoughts as he is generally healthy and I know that they will replace the valve when it needs done. The consultant has told me that my son is now big enough to have an adult sized valve which means he wouldnt "outgrow" it which is good.
He goes for his next review at start of November and i do always start to panic the few days before with the what ifs but thats what parents do.
I was diagnosed with a bicuspid aortic valve in the 1960s when very young by an alert GP and had an angiogram when I was about 4. My valve was functioning ok. I was discharged when 10 as condition was viewed as minor. I started echo’s when about 35 every 5 years at first then down to 3, then 2. It was at one that an aortic aneurysm was discovered. Had that repaired and my valve replaced 3 years ago and am fine. My valve was doing ok but was mild regurgitation by that time so it would have needed replacing at some stage. As others have said the surgeons are super and the important thing is to keep up with the monitoring. I’m sure your son will be fine
I was diagnosed with a bicuspid aortic valve in the 1960s when very young by an alert GP and had an angiogram when I was about 4. My valve was functioning ok. I was discharged when 10 as condition was viewed as minor. I started echo’s when about 35 every 5 years at first then down to 3, then 2. It was at one that an aortic aneurysm was discovered. Had that repaired and my valve replaced 3 years ago and am fine. My valve was doing ok but was mild regurgitation by that time so it would have needed replacing at some stage. As others have said the surgeons are super and the important thing is to keep up with the monitoring. I’m sure your son will be fine
My son aged, 48 at the time, was diagnosed as having a bicuspid valve by 2 different consultants in Spain where he lives. It is congenital and myself and his father and brother were all advised to get checked out but we all had tricuspid valves! two year later, after he'd been worried about over exercising (he is a fit and healthy person) he visited the hospital again and had another scan and was told very clearly that he has a tricuspid valve. What I am trying to say is they are not always right and it might be worth getting a second opinion. I would also advise that you and his father see your GP to get an ECHO organised to check whether you have bicuspid valve. I hope this helps a little and your son is only 6 so I can understand how you feel so worried and naturally want to do your best for him. Sending hugs.
Everyone' s condition is different but I was diagnosed from birth as having bicuspid valve and I'm not sure when stenosis, regurgitation developed or whether it was there from birth. Had annual check ups and no symptoms ( was always told symptoms.to look out for) nor severing of my condition until my 30s....seemed to be mild for years before it progressed to moderate and now I am severe (late 40s) had other heart issues but only a few years ago and told was unusual ( pacemaker)
At school I played sport and thought nothing of doing a sponsored bike ride in India when I was 30.
Just check out the facts of your sons condition... it does sound scary but for years often people just walked around without knowing these things and the NHS have kept an eye on me since birth and monitored my condition ( very reassuring!) my dad found out he had the same in his 50s ( no idea before) and lived a very full.life.... like me it progressed over time and he then had to have surgery...
Now.mine is severe will have to have heart surgery valve replacement imminently but I'm reassured this is such a common operation and asking around I know quite a few.people who have had one or more.
Hope that provides some reassurance but do ask the questions directly to the cardiology team.
Well, I don't know if this will be of any use to you, but I've had a heart murmur since childhood. It wasn't until 2020 that a cardiologist diagnosed me with a bicuspid heart valve that was calcifying. But I was already 57 at that point! I went ahead and let them do the operation, but was quite disappointed with the results. They told me I would feel 20 years younger and get my stamina back, but nothing of the sort happened and it was actually the exact opposite! But the cardiologist told me I wouldn't make it to 60 if I didn't get the operation. I turned 60 in June. So I don't know if I made the correct choice, probably never will. (At least my heart murmur is gone!) I should mention also that I'm in Dallas, so it's a very definite healthcare-for-profit system here, and I suspect that many doctors prescribe expensive treatments for patients full well knowing that they would probably be better off without them, but of course I have no way of proving this. But on the bright side, I was told that I was born with my bicuspid valve and I made it to 57 with it. AND, Arnold Schwarzenegger also had his bicuspid valve replaced a week before I did, but he must have been over 70 at that time! So no, I seriously doubt that your child is going to just die in his sleep, unless his is very severe, but you state that it isn't.
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