Need to know what is the best aortic valve replacement for kid around 10-15

[Guest]

My kid is 3+ as of now and gone through BAV at the age of 6 months, having bicuspid valve. Doctor told me he will need valve replacement probably 10+ years of age, I am not sure which valve would be better for him... and not sure what would be possible technology enhancements that time....... does mechanical valve last lifetime? For what age of child mechanical valve can be replaced? Can person infront of you can hear the sound of mechanical valve? Kindly share your experience.... what would be best for his age....

 

[dick0236]

Many advancements in valve design, materials, etc. are probable within 7-12 years. I've read of pre-teen children receiving a mechanical valve and know of one man who is now in his 60s that received a mechanical valve at 10. He has posted on this forum under the screen name "RCB" and you might try to view his old posts. Mechanical valves are designed to last lifetimes.....I received mine at 31 and am now almost 80 and the valve shows no sign of "wearing out". The noise depends on body acoustics. You can't hear mine if you stand next to me and I am 5'9", l70 lbs.

 

[cldlhd]

First of all I'm sorry to hear your child will need surgery. I think it'll be pretty difficult to predict what advancements will take place in the next 10 yrs, It's possible they'll have a mechanical valve that has the hemodynamics of a native valve and won't require warfarin.I would think fitting a valve that's the right size for a child that would also be sized properly for an adult my be difficult. Is valve repair out of the question? A repaired valve would continue to grow as your child grows.

 

[Northernlights]

This is tough for you both. Cdhld is right, the main problem is that children can only be given small valves, and these will not be large enough to sustain them as adults. Therefore a mechanical valve would need replacing anyway as the child grows. Anti- coagulation is in any case problematic for children and especially teenagers, and the ticking in a child would indeed be audible also to other children.

The best haemodynamics come from solutions that enable the valve to grow with the child: ie valve repair or the more established and generally first choice Ross procedure, where the child's pulmonary valve is placed in the aortic position and a homograft is used to replace the pulmonary valve. Both of these are safe but technically complex operations that need very skilled surgeons, and both are likely to require re-intervention at a later date.

Probably the best solution available now is a Ross, with a mechanical valve as a bail-out if re-intervention is needed in adulthood. Repairs are getting better all the time, though their longevity is questionable.

The good news is that children are amazingly resilient, and congenital surgeons are the best of the best and extremely adept at re-operations. I can see why you are worrying about future decisions, but the important thing is to make sure he is being followed up at an excellent children's hospital, and valve decisions should be made with the surgeons nearer the time. If you are in the US then good insurance is also important. I would recommend joining a support group for parents of children with congenital heart conditions - and enjoy his childhood.
I wish you the very best

 

[pellicle]

Hi

I was diagnosed with a BAV when I was about 5 (I'm 53 now) and had my first OHS to do what today is probably called a repair when I was 10. That was sufficient to get me through to age 28. That's actually good and significant because operations replacing the living valve at younger ages replace a valve which grows as you grow with an artificial one (which of course does not grow) is not ideal - because the valve diameter becomes like some sort of govenor on flow and puts extra strain on the pump (your heart), which is not desired.

I have had 3 OH surgreies in total and they have all been successful. I am stronger and fitter at 53 than many who were born with no health defects but due to shitty lifestyle choices have squandered their birthright on sloth and substance abuse.

I mention this because with the right mindset this condition saves your life not ruins it. Its mindset because I had a different outcome to a cousin of mine who had a lesser heart issue, but chose drinking, smoking and "going to the pokies" (gambling) as his method of dealing with it.

I'm sure with the advancements in modern technology and technique since 1974 your child will have better opportunities than I did. I managed to have a good career, live in 3 countries and have an active life where I enjoy cross country skiing and photography.

I was born in Ausrtalia, and amid the occasional hospital time, I have walked along the Great Wall, worked in Japa and towed ski sleds with my wife and friends in Finland (where I lived and worked for about 4 years so far).

Life quite often is what you make of it

Best Wishes

 

[rbopche]

Thanks a lot for your help...

 

[rbopche]

First of all I'm sorry to hear your child will need surgery. I think it'll be pretty difficult to predict what advancements will take place in the next 10 yrs, It's possible they'll have a mechanical valve that has the hemodynamics of a native valve and won't require warfarin.I would think fitting a valve that's the right size for a child that would also be sized properly for an adult my be difficult. Is valve repair out of the question? A repaired valve would continue to grow as your child grows.

It was repair which happened when he was 6 month old... and there is mild leakage.... as of now he doing good and doctor had not restricted any activity and has asked to visit next year for checkup...

 

[cldlhd]

So who is the doctor who said the valve will need replaced a cardiologist or cardiac surgeon?

 

[rbopche]

It was repair which happened when he was 6 month old... and there is mild leakage.... as of now he doing good and doctor had not restricted any activity and has asked to visit next year for checkup...

 

[rbopche]

So who is the doctor who said the valve will need replaced a cardiologist or cardiac surgeon?

Thanks for reply. Let me explain you in details.... I am from INDIA and my kid's Balloon Valvuloplasty was done in India in Jul 2012 and now he being seen since last 2 year in USA by doctor Danford in Omaha, NE (pasting link for more details about doctor), he is cardiologist. The doctor in India and doctor Danford said same thing... they said after balloon valvuloplasty, usually patient needs valve replacement. I am assuming balloon valvuloplasty is kind of repair. Do you suggest me to show to a surgeon?

Is balloon valvuloplasty not a repair?

http://www.healthgrades.com/physician/dr-david-danford-x7wyk

 

[cldlhd]

From what I know of balloon valvuloplasty its used to help open up a narrowed valve and alleviate stenosis of the valve not leakage. I would have him looked at by a surgeon . Like a lot of people out here I'm partial to my surgeon -Dr Joseph Bavaria- of The Hospital of the University of Pennsylvania- but I don't think he's seeing new patients this year as he just got elected President of the Society of Thoracic Surgeons ( or something like that ) . They have a great cardiac thoracic program and they're connected to CHOP ( Childrens Hospital of Philadelphia) one of if not the best rated childrens hospital in the United States.

 

[Northernlights]

There doesn't seem to be any reason at all to take your son to a surgeon, given that he is being followed by a paediatric cardiologist already, and has had a procedure (the valvuloplasty) which is specifically performed to correct aortic stenosis at least temporarily until the child is older ( at 10 to 15 , and he's only 3!). The valvuloplasty is working fine, with only mild leakage (which is really no problem), and the paediatric cardiolgist has no concerns.

In any case, while Dr Bavaria is an excellent surgeon, children should only be seen (and operated on) by paediatric cardiac surgeons. It's a quite different set of skills. CHOP is an excellent children's hospital, but since nothing actually needs for a good many years anyway, I would suggest relaxing a bit and just go back and see Dr Danford again next year!

If you haven't already joined a support group for parents of children with heart problems I am sure it would be helpful - more so than us!

 

[cldlhd]

I should have read over your original post again as I forgot he's only 3 and the predicted need for surgery is a ways off. I totally understand wanting to do the research and be ready but seeing a surgeon now wouldnt be very productive as your son will be totally different physically when the time comes and the technology available may be also . I'm not familiar with your son's pediatric cardiologist but in my limited experience there can be a significant difference of opinion regarding course of action between a cardiologist and a surgeon. My cardiologist went to Duke and did her residency under Dr Bavaria at Penn but she advised treating my bav and aneurysm with a medicate and wait as long as possible while he felt being young, relatively, healthy and active my decision to have the surgery now was warranted. I lived with the aneurysm for 11 months and that was long enough for me.
It's unfortunate that you and your son have to go through this but at least it was caught and he's lucky enough to have a father whose obviously doing what he can about it.

 

[rbopche]

There doesn't seem to be any reason at all to take your son to a surgeon, given that he is being followed by a paediatric cardiologist already, and has had a procedure (the valvuloplasty) which is specifically performed to correct aortic stenosis at least temporarily until the child is older ( at 10 to 15 , and he's only 3!). The valvuloplasty is working fine, with only mild leakage (which is really no problem), and the paediatric cardiolgist has no concerns.

In any case, while Dr Bavaria is an excellent surgeon, children should only be seen (and operated on) by paediatric cardiac surgeons. It's a quite different set of skills. CHOP is an excellent children's hospital, but since nothing actually needs for a good many years anyway, I would suggest relaxing a bit and just go back and see Dr Danford again next year!

If you haven't already joined a support group for parents of children with heart problems I am sure it would be helpful - more so than us!

Hi - how can I join the parent group? Please help.

 

[Heart Of The Sunrise]

Everyone has their opinion.......I initially was thinking tissue valve.......did my research and chose the ON-X valve. Coumadin and self-testing are not a problem.

My mother just turned 92...one of the factors in choosing a mechanical......desire to hopefully avoid additionally surgeries also drove my choice.

 

[JulienDu]

also discuss eventual repair, I had a BAV and severe stenosis when I was born, had a repair that was a great success and if I did not have an aneurysm 20 years later, my valve would have still be going for another decade or more.

 

[charbelnjeim]

10 years from now valve replacement would be called valve repair I think since technological advancement would surely give us a valve similar if not better than the native and dont forget that 10 years frm now 3d printing , stem cells and artificial organs would probably all be part of cardiac surgeries so as someone stated above I think u should focus on keeping ur son safe and getting the best insurance there is out there

 

[dornole]

"Is balloon valvuloplasty not a repair?"

I had the same thing on my mitral valve and would consider it repair, after all my valve was fixed! The difference is, balloons are often done by an interventional cardiologist who specializes in these procedures. When most people here talk about repair they mean a repair done by a surgeon via cutting - an open heart repair.

I also was told (I swear!) by my cardiologist that the balloon was a one time deal. However when I just saw him recently he said "Why would you think that?" I guess it depends on the degree of stenosis vs regurgitation. If the regurg is not too severe they can correct stenosis again via balloon. But if the regurg is severe then the balloon is not a workable solution and you need a referral to a surgeon for OHS. I was told that once the balloon has outlived its usefulness I will need valve replacement rather than an open heart repair because rheumatic valves are too calcified to bother repairing via surgery, and rheumatic fever is the cause of my valve problems. But some people are of course good candidates for valve repair via open heart surgery which can correct a wide variety of problems.

Hope some of this helps.