Any other moms of "heart babies"? (CHD survivors)

[2pinks1blue]

Just wondering if there are any other moms here with babies born with congenital heart defects.  I would love to hear from you, your experiences, etc.  My son was born in October 2010 with an undiagnosed CHD - Transposition of the Great Arteries.  We had no idea.  He just came out blue with low O2 sats and they rushed him to the NICU immediately and about an hour later we learned about his diagnosis.  He had open heart surgery at 5 days old to repair his CHD and is now 22 months old and has done great.  He's just like any other toddler.  We just had his yearly follow-up with his cardiologist and learned that his pulmonary arteries are smaller than they need to be, which is not uncommon with these babies following the type of surgery he had.  So his cardiologist is recommending a heart cath.  I'm scared and nervous and just looking for other heart moms to talk to.  To get advice, hear experiences, etc.

[fairejour]

You should post this in "Special Needs Parenting". There are lots of moms with heart kiddos.

[AnnieA]

Hi, my 13 month old was diagnosed with Tetralogy of Fallot w/Pulmonary Atresia shortly after birth. She's had two cardiac caths and two heart surgeries. Are you on FB? There is a great private group on there for Heart Mamas that is a huge source of strength for me.

[2pinks1blue]

I am on FB!  What is the group called?  I am always looking for moms of heart babies to chat with and share experiences. :)

[AnnieA]

It's called Heart Mamas. If you search for it, it should come up and you just need to request to join. Just a warning, it is a mainstream group so they sometimes discuss CIO, circ, vaxing on schedule, etc.

[2pinks1blue]

Thank you, Annie. I will definitely check out that group. :)