Christina,
My daughter had a St. Jude mechanical mitral valve placed when she was 3 weeks old. She outgrew it and had it replaced last year at age 13. They did not expect that it would last as long as it did but she stayed pretty small and the valve was able to handle her size for many more years than they expected. (The surgeon told us to expect replacement in 4-6 years; she made it to 13.) She was able to receive an adult-sized valve at replacement so she will not outgrow this one. This new valve is expected to last a long time, and with advances in technology I am not worried about the next replacement being an OHS just as you said.
Before her mitral replacement the first time, I did not have time to research options or form an opinion about what may be best, so I cannot speak to one being the best option for you. I do recall the team telling me a tissue mitral valve was not an option for her at that time.
We do also have experience with tissue valves. She had her pulmonary valve replaced at 9 days with a cadaver (not porcine or bovine; it was human) valve. That one needed to be replaced at age 6 1/2 because it calcified and narrowed significantly. She needs it replaced again this summer but they should be able to do it transcatheter because it is the pulmonary.
She has been on coumadin her whole life. Our experience with it has not been too difficult. It can be a bear to regulate but I have learned to adjust the dose and keep her pretty stable. We check her blood at home with a monitor similar to a diabetes glucose monitor. She is not able to play contact sports and we have to be careful if she gets hurt. But she dances competitively and leads a fairly normal life, within the confines of what her CHDs allow.
I'd be happy to talk with you more about it. Feel free to email me at
mscarcelli@comcast.net.
Good luck with the decision and the surgery!
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Melissa
North Wales PA
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Original Message:
Sent: 02-23-2018 14:09
From: Chris
Subject: Looking for answers: Mitral valve replacement: Animal v. Mechanical
Hi everyone,
My 17 month old daughter is about to go in for her 3rd open heart surgery. This time they are going to repair or replace her mitral valve.
Her cardiologist has suggested the mechanical valve because of longevity. But from what we understand, it would still need to be replaced in possibly 8-10 years. With that she would have to be on blood thinners for the rest of her life.
My husband and I are leaning toward the animal (pig) valve, because it doesn't require the blood thinners. And while it would need to be replaced sooner, she wouldn't have to be on blood thinners while trying to have a somewhat normal childhood.
Has anyone gotten one v. the other? Wished you had gone with the one you didn't choose?
Her surgery is coming up rather quickly so we are trying to be the most prepared we can be.
Right now, animal is winning because at this young age, both would have to be replaced no matter what. Also, I'm hoping that the transcath mitral valve replacement will be more common place by the time she would need her next valve replacement. It seems to be moving in the right direction.
I've never posted on here before, but I'm desperate for feedback. The thought of going against what her cardiologist recommends is terrifying, but I feel like it may be the best option for now...because she is so young.
Thanks so much for your help,
Christina