Nostr Web Client

If you don’t mind me asking, what was his condition at birth?

I’m currently at home with my one-month old (Noah) who has several serious congenital heart defects (Hypo-plastic Right Heart / Pulmonary Atresia) and a very similar outlook to what you described. It’s very encouraging to see your kiddo’s story!

Susiebdds 2y ago

Rob, I’m so sorry to hear about your adorable boy and I’m so happy you were encouraged. My son had a large type I VSD. We were told starting from the time he was 3 days old that he would need surgery imminently, but he continued to defy the odds and had no issues nursing and didn’t need medication. At 6 he started exhibiting an enlarged heart and some lung issues so surgery was necessary.

My advice for you is to do as much of your own research as possible on your son’s condition and find a surgeon who has performed the highest number of successful surgeries that your son needs. A surgeon’s pedigree is not as important as his skill.

Prayers to your family and that beautiful boy of yours.

Reply to this note

Please Login to reply.

Discussion

Rob 2y ago

Thank you so much for the kind words. I really appreciate all of it, and I’m so happy for you and your boy. You’re both incredibly strong! 💙

I’m extremely fortunate that my wife is a physician and has been researching the hell out of everything. She’s pointing us in the right direction, along with the heart team here in Columbus.

We may end up going to Boston Children’s for a bi-ventricular heart repair IF Noah is a candidate (as he grows). Fingers and toes are crossed for that since the alternate path is two open heart surgeries before the age of 4.

Here’s another pic because I’m quickly learning I just can’t help myself. 😀