Mitral Stenosis in Kids

[ssingh007]

I want to know more about Mitral Stenosis in Kids.

a) Valve Replacement / Repaire cases in read on lots of adults but
how its work on kids.

b) My daughter is almost 2 year and Dr. told she have Mitral Stenosis. So i want to touch base with parents with same type of heart condition.

Thanks,

Suri,

 

[Nancy]

Hi Suri-

I want to welcome you to this website. There are lots of wonderful folks here. Someone is bound to have info. on mitral stenosis in children. There might even be some young adults who have been through this surgery as children, or something similar.

At any rate, we'll all be here for you, the mom, as well. We have lots of people here who have been through their loved ones surgeries as the caretaker. I'm one myself, my husband has had 3 valve surgeries, has a pacemaker and has had lots of other things.

Please come into the site when you need support and help, we'll do our best. It must be a very hard time for you.

 

[Gnusgal]

I do not personally have experience with mitral stenosis (Pulminary, but not mitral). However, I'd like to direct you to a web site that MAY contain some more information. www.tchin.org is a site that was started by a mother of a child with complex congenital heart defects. It has grown into a BIG site that medical professionals contribute to, as well as gain valuable information from. I know they have links to info on many different CHDs. They also have WONDERFUL support groups, though you must pay a membership fee to be a part of them (to pay for the cost of keeping it all going). Some of the most valuable people on those support groups ended up heading in other directions due to the membership fee, but I only know where the adults with congenital heart defects went (the parents of children went another direction). To find out about the adult group (which many parents are a part of, as well, since adults can let parents know what it feels like to grow up with these conditions) go to www.vciweb.com/ACHDSupport/

I hope this information can be helpful. I do want to assure you that medical science has come a long way in the last century. Being a 2 year old with heart defects now is a lot different than when I was 2. I didn't have any corrective surgery until I was 21, (though I did have some surgeries to help ease the strain on my heart) and I have (to quote my surgeon) "a very complicated problem" and "very difficult anatomy" (gotta love that medical jargon ). The risk was too great back then, but now they are taking a new approach with patients who were born with my defects. My surgeon said that if I had come to him in the state I was in just before my corrective surgery (5 years ago) today he would have taken a COMPLETELY different approach than what was done. But you have to go with the best information you have at the time...

Good luck, and feel free to email me if you have questions.

 

[JimL]

Thanks, Niki, for that excellent link to the Congenital Heart Information Network.

 

[Gnusgal]

Not a problem. TCHIN has been my lifeline for the last four years. I've learned so much more about my condition and felt so much less "alone" since finding them (AFTER my "corrective" surgery, but better late than never). This site has also become a huge part of holding me together. But for some reason I always find these places after I've already gone through the surgery. Sure would have been nice to talk to all of you beforehand. Of course, it wasn't my first open heart surgery, and I DID have my CHD friends to talk to (some of them have also had VR), so it wasn't all bad.