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Old 02-02-2013, 11:50 AM   #11
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Re: Anyone have a child with congenital heart disease?

My son and I both have Marfan Syndrome, which is a connective tissue disorder. I had an ASD repair at 22 months old, unrelated to the Marfan, and had my aortic root repaired at 22 years old. It is my greatest hope that the gains made Marfan research in the years since I was born will mean that my son won't ever need open heart surgery. He is followed yearly with echocardiograms and so far is doing just fine and only has minimal enlargement of his aortic root.


Ang- (MFS) Mommy to Joshua (7)- MFS & SPD and Samantha (4)
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Old 02-04-2013, 10:12 AM   #12
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Re: Anyone have a child with congenital heart disease?

Originally Posted by EmilyA874 View Post
Nice to "meet" other heart mamas on here! My DS has Tetralogy of Fallot (TOF), he is 3 weeks old today so we are really just starting on this journey. We are lucky in that he is a "pink tet" and we got to bring him home not too long after he was born. He will have his "repair" surgery between 3 and 5 months old most likely. He is doing really well so far and not on any medications yet, though we were told to expect him needing to be started on lasix by our next cardiology appointment on the 13th.
zaeaton, we don't have any support groups near us either. If you are on facebook there is a really great group of moms of CHD babies/kids, it's called "Heart Mamas" if anyone would like a link you can PM me for it (not sure if I am allowed to post it?). It's really helpful to have people who have been through/are going through this to talk to.

Hang in there! if you need to talk pm me ive been through it all
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