Options for my son, age 13, bicuspid Aortic valve + server Aortic Regurgitation

[judy bee]

Very Best Wishes For March 21st. Such wonderful testimonials . You and your son are in good company here.. Just please keep being aware not to project your fears onto him. That wasn't advice :}
I'm not qualified to do that.Just a kindly comment.. Good Luck..

 

[Lisa2]

Thanks Greg for your perspective.

This is something which keeps me up at night.
Am I making the right decision if we go with mechanical as backup ?
Can my son lead a life with normal physical activities ?

I think your son could most definitely lead a life with normal physical activities, although the activities may differ from what he does today. My brother was unable to play contact sports due to his heart problems and he developed other interests. He loved swimming (not competitively), bowling, skateboarding, chorus, and video games. Oh, and basketball with friends and family. He wasn't able to play on "organized" sports teams; but, he got plenty of exercise (mostly in jaw jacking ...)

 

[dornole]

Just wishing your and your son well. I had a mitral valvuloplasty to correct stenosis which left me with moderate / moderate-severe regurgitation instead, but I was very symptomatic beforehand, so a really good tradeoff for me. I'm sorry you're having to proceed to surgery so soon. When it's my time it will be mechanical due to the durability. Wishing you wisdom with your decision and a very positive outcome for your son.

 

[m1ffb]

How is life with a mechanical valve ?
I understand the need to take daily blood thinners to maintain INR numbers.

What are the other restrictions ?
Are there some foods / diets which should be avoided ?

 

[Duffey]

How is life with a mechanical valve ?
I understand the need to take daily blood thinners to maintain INR numbers.

What are the other restrictions ?
Are there some foods / diets which should be avoided ?

If you check the Anti-coagulation forum for threads, I think you will find a wealth of answers for your question.

 

[m1ffb]

Thanks Duffey

 

[bugchucker]

My thoughts are with you worried dad, I'd be terrified too in your shoes. You have been given lots of great insight here and we all want to help in anyway we can. I was relatively young, 37, when I had my surgery and my recovery was surprisingly easy. Feel free to private message me if you want to discuss my experience. I do agree that your son will greatly appreciate you being positive and enthusiastic about his surgery and recovery, and I don't presume to know what you are feeling. Be strong, you are one of the most important people in his life, a role model, parent, friend...Be a strong advocate for him while in the hospital, don't hesitate to question the staff, they are there to help make this as easy as possible, most love their jobs and are often underappreciated.

Phil

 

[m1ffb]

My son had a successful bicuspid aortic valve repair at Boston Children's Hospital.
We will forever be in debt of Dr Pedro DelNido for his surgical skills.

My son now has "proper" tricuspid aortic value.
He now has 2 native cusps and 1 cusp made using his own pericardial tissue (using techniques derived from Ozaki procedure).
The surgeon used material from the third malformed native cusp (which was removed) to suspend and fix the prolapse in one of the native cusps which was saved as a result.

Pre-surgery my son had severe aortic regurgitation with about 61 - 75 mm Hg of gradient.

Post surgery he now has trivial-mild aortic leakage and gradient is now reduced to 20 mm Hg.

Needless to say, we are very happy with the outcome of the procedure and would highly recommend Dr Marx and Dr Pedro at Boston Children's Hospital.

Going forward our concern would be get his elevated blood pressure back to normal, which hopefully should happen over time as his body "adjusts" to the newly repaired heart.
My son is on medication to lower his BP to within "safe" numbers.

Have any of you noticed changes to BP after open heart procedure ?

What are the pro-active steps which can be followed to prevent any chances of endocarditis ?

 

[Chet_]

Happy to hear the good news!
I had an Ozaki ~ 4 months ago and am pretty well recovered.
I also went from severe to mild regurgitation and hope that it stays that way.
I didn't have elevated BP but I remember my heartbeat feeling "stronger" the first week or so until I adjusted.

Fluid restriction was tough for the first few days.
What else ... My sternum still hurts if I sleep on my side.

Hoping for a speedy, full recovery for you son!

 

[cldlhd]

So glad to hear the good news. As far as endo is concerned the most important thing that springs to mind is great dental hygiene although with his native tissue once everything is healed I would think his risk would be about the same as the general population. That procedure is interesting, I wonder how new it is as when I had my repair in 2015 it wasn't mentioned to me. Although since my bav is a sievers 0 -two equal size flaps- I doubt it would have been an option.
Congrats!!!

 

[Duffey]

So happy to read your very good news! Congratulations!

 

[m1ffb]

Thanks a lot.
This forum has been very helpful.