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I am new to this

Posted by on Mar. 8, 2009 at 9:58 PM
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Hello my name is Heather, I just found out 2 days ago that my DD who is 16 months has a Sub Aortic Membrane. She had a mummer at birth that we were followup with the cardiologist with every 6 months, she HAD a small leak in her mitral valve and some noise around her aortic valve, the mitral valve fixed its self but they just saw the membrane in her aorta. I am super sacred and totally clueless and dont really know what to do. I mean I am taking her for a second opinion , to see again what its all about. My doctor didnt seem to worried about it but doing my own research it turns out to be serious enough to have to do surgery, if not now sometime in the future. DO any of you have a child with this defect if so what is your plan of action? I am contemplating doing the surgery sooner rather than later for fears that her aortic valve might be damaged by us waiting. ANy advice would be helpful. I mean she is totally healthy in the 95th percentile for height and weight I know right now she is fine but it still scares the you know what out of me.


by on Mar. 8, 2009 at 9:58 PM
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Replies (1-3):
mamatoheartbaby
by Group Admin on Mar. 8, 2009 at 10:55 PM

I just want to say welcome to cafemom!!!

I don't know anything about a subaortic membrane, my son has tetralogy of fallot, I hope there is someone on here that can help you. There are also 2 great sites www.littlehearts.org and www.savinglittlehearts.com both do parent matching.

UmmKhalil
by Group Owner on Mar. 9, 2009 at 10:20 AM

Hi, and welcome Heather!!

I am not too familiar with Sub Aortic Membrane either, but I am sure there is someone in the group who will be able to help!

I think it's wonderful that you are going for a second opinion. It can never hurt, and you may end up getting a different diagnosis/plan of action, you know? Does her current cardiologist think that she should have surgery right away?

Please keep us updated, and, welcome again!

 

Nicole
-Mommy to Khalil, 3 years old
TOF/PA, 2 caths, 2 open heart surgeries

-Baby Boy, Due May 29, 2009!!!


Group Owner- HEART MOMS-www.cafemom.com/group/chdmoms








 








 








 








 








 








 








 








 

ocmom2
by New Member on Mar. 9, 2009 at 12:43 PM

Hello ladies and thanks for writing back. As of now her doctor wants to watch and wait to see if it grows, the problem is that if it grows it cause Aortic stenosis and causes the valve to regurgitate, damaging the valve is a big concern of waiting to do the surgery because then we have to worry about a valve replacement and she will have to be on blood thinners for the rest of her life, to me I feel like it is almost better to correct it before it gets to that point. My head is swirling right now and I know I will feel better as soon as I get all my questions answered. I just found out Friday and I didnt know the right questions to ask at the time. All I know is I dont think I can wait for her to get sick and then put her through surgery. I mean its been 3 days and now when she doesnt want to eat of acts tired I think something is wrong, even though I know she is fine. Any way thanks and I hope some one on here has had experience with this CHD. Also thanks for the links for the info.


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