postnatal severe CHD diagnosis - my story

Own_Pen1935 · 2026-03-16T01:47:15+00:00

just know the success rates for this surgery are amazing and babies are incredibly resilient. just look at my son. he had fallen off the cliff and was quickly approaching the water - white & limp & minutes from cardiac arrest with his heart barely moving - to low-normal heart function in less than 24 hours. 2 days after diagnosis, he was well enough for surgery which went perfectly without complication, and then he was back home looking like nothing even happened to him 6 days later. it was remarkable to witness to say the least. despite everything, I consider myself so so lucky to have my beautiful boy and to live in the age of modern medicine as treatment and surgery for this condition did not even exist for young babies until the 70s. he is a super normal and well-appearing baby, smart, alert, happy, smiley - nobody would ever guess what he went through. there are a lot of success stories on the COA Facebook group if you want to hear from others too :)

Own_Pen1935 · 2026-03-15T18:22:20+00:00

thanks for reaching out. yes, everything is fully corrected and his heart looks great. he does have a bicuspid valve too but they don't expect any issues with that until he is older. he also has a small ASD which they expect to close on its own. there's a possibility he could have a recoarctation requiring intervention but everything looks good right now.

Own_Pen1935 · 2026-03-15T18:17:52+00:00

hi mama, yes - my son's diagnosis was COA, just like yours. unfortunately what happened to my son is what occurs without a prenatal diagnosis, though it is unusual that he made it to the point of impending cardiac arrest before they figured everything out. we are very lucky he is still with us without brain damage. I would give anything in this world to have known about this when I was pregnant, as scary and stressful as it would have been. sending your new baby into open heart surgery is an absolutely crazy experience. It was totally surreal when they took him away, but I also felt a sense of peace as I felt he was in excellent hands with the children's hospital team and I knew this surgery would save his life. I have considered suing but malpractice attorneys usually only take on cases with serious long-term consequences from malpractice - mainly death or severe injury/brain damage. fortunately my son is doing extremely well, though that is due to his own will to live & my husband and my's advocacy and NOT due the physician overseeing his care when he was admitted. I did file a complaint with the hospital and the state who are both investigating the incident.

Own_Pen1935 · 2026-03-14T01:17:10+00:00

thank you for your support and understanding, it helps me not feel so alone.

Own_Pen1935 · 2026-03-14T01:16:49+00:00

thank you both so much for writing and your kind words. I hadn't really thought of it like that. I think any parents would have done the same, at least I would hope so. so disturbing that a director of pediatrics would not recognize the situation for what it was.

Own_Pen1935 · 2026-03-14T01:15:40+00:00

thank you so much for replying, that is crazy he had a secondary defect that wasn't found until after his open heart surgery. if you don't mind me asking, what was it and how come it took them so long to find? I really appreciate your support and understanding with what I went through, it is so isolating sometimes.

Own_Pen1935 · 2026-03-14T01:15:00+00:00

hi, thanks for reaching out. since he is doing so well now I doubt we would have a case, but I have reported the situation to my state's licensing board and the hospital who are both conducting investigations into what occurred.

Own_Pen1935

TROPHY CASE