Hoping someone can help me. My child is 10 and has a cleft mitral valve. He is not showing any symptoms. The regurgitation is moderate according to one cardiologist ...Read more
Hoping someone can help me. My child is 10 and has a cleft mitral valve. He is not showing any symptoms. The regurgitation is moderate according to one cardiologist and severe according to the other. One recommended meds the other recommended surgery. Looking for input if anyone has experienced this. We are in the process of getting a 3rd opinion but hoping someone can point me in the right direction. He has only had echos since birth and wondering if we should have some kind of further testing before sending him into surgery. Does anyone have leads on the best surgeon for this type of repair? We live in Pennsylvania. We want the best person to ensure he gets a repair if that is what we end up deciding so willing to travel. Any stories of waiting since we have two different opinions is also appreciated. It is so very hard to send a child into surgery that seems so healthy. I don’t know if this is the right place but hoping someone can help me. Thanks so much!
Ginny Turner Hi Maegan, and welcome. The prospect of heart surgery for your child must be daunting - it is for adu ... Read more
Ginny Turner Hi Maegan, and welcome. The prospect of heart surgery for your child must be daunting - it is for adults, too. You are taking exactly the right steps to get more than one opinion and learn as much as you can. Fortunately, there are many experienced and referenced surgeons who specialize in mitral valve repair, many near where you live. Deena Elani (a patient who had mitral and tricuspid valve repair last year with Dr. David Adams at Mt. Sinai), posted an excellent resource today on the patient news feed linking to the Mitral Foundation, where you will find referenced mitral valve surgeons and hospitals around the country. Mitral regurgitation can be silent yet severe, as in my case. I am asymptomatic and healthy but will have mitral and tricuspid valve repair surgery in April at the Cleveland Clinic with Dr. Marc Gillinov. Best of luck and keep asking questions. There are many in this community who can help. Here's the link to the Mitral Foundation, which lists 20 centers across the country that specialize in mitral valve repair: https://www.mitralfoundation.org/reference-center-award/find-a-center
The Mitral Valve Repair Reference Center Award Program was created to provide patients and referring physicians with the resources needed to make a well-informed choice regarding the best heart team for mitral valve repair surgery. This award makes it easier for patients to identify the nation’s best surgeons and hospitals for mitral valve repair surgery.
Richard Munson Agree with ginny. I also showed zero symptoms but had a mitral repair. Waiting until you have symptom ... Read more
Richard Munson Agree with ginny. I also showed zero symptoms but had a mitral repair. Waiting until you have symptoms may be the old approach. By that time, the surgery can be more invasive. You want repair if possible. You also want your 10 year old to have a full life and not have “ what if” hanging over your head forever. First question i was always asked after echo. Do you have any symptoms. My answer was always no. Next response was come back in 6 months for re evaluation. I finally said ENOUGH, it gets a little worse each time. Do it. Not sure if there are heart surgeons that specialize in youngsters but if there are, i would start there. Good luck
Deena Z Hi Maegan, heart surgery is a difficult decision, but has to be even harder when it is your child and ... Read more
Deena Z Hi Maegan, heart surgery is a difficult decision, but has to be even harder when it is your child and a very young one. The ECHO is usually the best test. A TEE will also be done, but surgeons differ on what they prefer. And for a young child the indicators for surgery may slightly differ from adults. You definitely need to go to a surgeon that has successfully performed surgery on young children. Dr. David Adams in NYC has an outstanding record for such and you don't get any better than the Cleveland Clinic in Ohio, particularly Dr. Mark Gillinov. You might wat to contact both offices. They will ask for the ECHO imaging (disc) and a copy of the most recent ECHO report to be sent to them. In this way, you will have "gold standard" opinions. The direct telephone number to Dr. Adam's office is 212-659-6820 or x6821. Your home state of PA also has great hospitals, so I would check US News & World reports for ranking info there or another heart warrior on this site can help.
Here's a story about Dr. Adams and his work with children, international pro bono work. Godspeed.
https://www.mitralfoundation.org/es/node/69
In nearly three decades as a heart surgeon, Dr. David Adams has saved the lives of more than 11,000 patients, making it impossible to keep up with all of them. That’s why he was so touched when one former patient, Berthony Bertrand, dropped by to see him at CEDIMAT Hospital in Santo Domingo, Dominican Republic.
Richard Munson Dr. Adams is quite a guy after reading this. Not far from pa. And his history with youngsters would ... Read more
Richard Munson Dr. Adams is quite a guy after reading this. Not far from pa. And his history with youngsters would be a positive factor.
I am from: Harrisburg
Here's a story about Dr. Adams and his work with children, international pro bono work. Godspeed.
https://www.mitralfoundation.org/es/node/69