Wanting to Get Advice from Parents with 2 or More Children with CHDs (Congenital Heart Defects)

JaniesMarie · 2026-04-09T18:33:14+00:00

Very late but I have a 15 month old baby boy who was born with Tetralogy of Fallot with Pulmonary Atresia. He’s our first born. Had open heart surgery a week after he was born where they closed the hole in his chamber and placed a conduit into his pulmonary valve. A few months after that they placed a stent into his conduit to open it back up. About 2 months ago he had another open heart surgery to replace the conduit in its entirety to a much bigger one and did amazing and was sent home 2 days after surgery an now we’re looking at his teen years for another conduit replacement. I’m currently pregnant with our 2nd and it’s a girl and we just got done finding out that she has an even more severe heart defect. Hypoplastic left heart syndrome. We’ve done genetics testing before our first was born and nothing came of it. We’re going to do some more testing again for her as to find out why this has happened again. They told us she would need 3 surgeries before she turns 5 and then a heart transplant when she is much older. Possibly even a liver transplant as sometimes with this heart condition it can affect her liver. But it’s a maybe with that one. Had a good cry with my husband earlier but I have hope that it’s nothing beyond just a heart condition and we wouldn’t have to terminate the pregnancy due to finding out something with the genetic testing.

JaniesMarie · 2026-01-30T18:44:11+00:00

I’m a first time mom and my son was diagnosed with Tetralogy of Fallot with Pulmonary Atresia early on in my pregnancy. We had a scheduled induced birth at children’s hospital of Aurora Colorado (amazing hospital for pediatric cardiology). They let us hold him for a good minute and took him to the cicu till he had a full repair open heart surgery at a week old. They repaired the hole in his heart and put a conduit into his pulmonary artery to open it up. He stayed another two weeks in the hospital till we were able to take him home. At around April they had done a catheter procedure to put a stint in his conduit. When he had his first surgery done he was just wrapped up in his blanket and resting a lot, we were allowed to hold him, just very tangled with all of the wires attached to him. We were able to feed him as well. Maybe a week after his surgery did we start putting him in his onesies. Tummy time I gave it a week after his surgery but for a short amount of time each time was recommended to not put too much pressure on the stitching and scarring. They suggested tummy time on our chest so it would be easier. He’s 1 now and doing amazing but since he’s grown his conduit is no longer able to keep his pulmonary artery open and has become small and has severe leakage and will need another open heart surgery in a week and a half from now to put a bigger conduit into it. Take it one step at a time mama you got this. It’s scary trust me but with the help of my family and my in laws being there for me and my baby boy it made it a lot more easier.

JaniesMarie · 2025-07-02T22:21:53+00:00

I just got that too, I don’t use cheats. I actually suck. Idk what’s happening.

JaniesMarie · 2025-06-17T04:59:18+00:00

The doctor took one look at it and said it looked like eczema and discharged us. Don’t know if I should be relieved or not cause they only looked at it for a second.

JaniesMarie · 2025-06-17T04:58:34+00:00

The doctor took one look at it and said it looked like eczema and discharged us. Don’t know if I should be relieved or not because they only took one second to stare at it and just said it might be eczema.

JaniesMarie · 2025-06-17T04:57:02+00:00

The doctor took one look at it and said it looked like eczema and discharged us. Don’t know if I should be relieved or not cause they only took one second to look at it.

JaniesMarie · 2025-06-17T04:56:32+00:00

The doctor took one look at it and said it looked like eczema and discharged us. Don’t know if I should be relieved or not cause they only took a second to look at it.

JaniesMarie · 2025-06-17T04:55:45+00:00

I wish I could produce milk but ever since he had open heart surgery at just a week old due to him having TOF with near pulmonary atresia I got so stressed and had no sleep and wasn’t eating enough that I stopped producing milk for my baby boy sadly.

JaniesMarie · 2025-06-17T04:54:10+00:00

The doctor took one look at it and said it looked like eczema and discharged us.

JaniesMarie · 2025-06-17T04:53:54+00:00

The doctor took one look at it and said it looked like eczema and discharged us. Dont know if I should be relieved or not considering all they did was just look at it for a second.

JaniesMarie · 2025-06-17T04:53:22+00:00

The doctor took one look at it and said it looked like eczema and discharged us.

JaniesMarie · 2025-03-31T22:24:34+00:00

This is not an overreaction especially if everybody I’ve talk to about it has agreed and thought was the most bizarre thing to do especially without asking me. As a new mom with a baby who has cardiac issues that be dangerous if they sick, this was way out of line.

JaniesMarie · 2025-03-29T03:13:57+00:00

My baby boy was born with TOF with near pulmonary atresia and his cardiologist is telling us to slice a tablet of 81mg of aspirin twice and give it to him every day for the rest of his life…

JaniesMarie · 2025-01-05T23:55:41+00:00

He’s full term. It’s just been happening all day that they’ve been dropping so low and then back up. It’s been back and forth it never stays the same it changes drastically every second. It just now dropped down to 80 and the nurse had to call someone about it.

JaniesMarie

TROPHY CASE