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New here: Just looking for support

Matkinson08Matkinson08
in Special Needs

I'm more of a lurker than a poster.  Had my "big" us yesterday and was told that my son has a congenital heart defect, specifically a conotruncal aorta/pulamary artery defect that has to be confirmed by a pediatric cardiologist.  My OB is making an appointment for a fetal echo as soon as they can get me in, but in the mean time we get to stew on it.  I guess I'm wondering if there is anyone on here that has gone throught this already and could give me some advice.

Thanx, MA.

JMA 2/26/09-9/28/09 MMA 11/22/10
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Re: New here: Just looking for support

  • akimboakimbo
    We didn't know about our son's SVAS until after he was born, but I can relate to how concerned/scared/freaked out you may be. The best advice I can give you is to really try to get most of you information from the professionals.  That being said, I'm sure you're all over the internet trying to get as much information as you can. Please try to rememebr that not everything you read, not every symptom/problem will apply in your case. (That was the hardest for us.)  Maybe the most helpful our geneticist said to us is to remember that we were a happy family before DS diagnosis and we still will be.  She understood we were sad/scared at the moment, but assured us we're still the same family walking out of her office that walked into her office. GL.
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  • hannah&benhannah&ben

    It's not the same as what you are dealing with but my son also has cardiac issues... he has complete heart block and Long QT Syndrome... he also has a pacemaker.  We found out about his issues when I was about 24 weeks pregnant and they tried to deliver him... those were scary times I remember all to well. He's had several surgeries and continues to have ongoing issues as he gets older.

    I'm so sorry you have to experience any of this - you, your DH and your sweet baby will definitely be in my thoughts and prayers.  

    I will praying for the best possible outcome for you guys.

    Hannah

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