Hemophilia, CHD/Tricuspid Atresia, HRHS

xooemilyrose

Any other mom to be or mommies out there with their child having Hemophilia or a Congenital Heart Defect?

My son was diagnosed with Tricuspid atresia/Hypoplastic right heart syndrome - hell have to undergo his first open heart surgery at about a week old, 4-6 months for the second and they said 1-3 years old for the third.

He was also diagnosed with Hemophilia B, which is a bleeding disorder where his blood lacks a factor of clotting so hell have to be given medicine so his blood clots.

As if being a single 21 year old mom wasn't scary enough, I'm now preparing myself for all of this! Ahhhh! I'm silently going crazy and no one even knows it!

babylimas

oh wow, I'm so sorry. I have a son with a CHD and he was at risk for having Hemophilia B as well. It's kind of crazy to meet someone else with that combo. Hemophilia B is so rare. Luckily he was not born with it. We did a lot of research about hospitals for surgery when we were concerned about him inheriting the hemophilia on top of his CHD. Where is he being treated? 

My son has Tetralogy of Fallot w/ an additional ASD. We have been very lucky with him so far. His heart failed at about 11 weeks and they successfully completed a full repair. 

Are you on the Heart Mamas facebook group? There are tons of kids with HLHS/HRHS. If not, PM me and I can help you connect.  

xooemilyrose

He's being seen from now until forever at Children's Hospital of Philadelphia. Luckily I live 45 minutes away (south jersey). I'm not part of that group on Facebook, but I would love to be! Message me the details if you could.

His hemo b & chd are freaking me out. Idk why it had to be both and just not one at least! Luckily Im aware of both circumstances so they can plan it all out now!

Junebug060609

@ChoicesMom‌ I know this isn't what Fishy has, but I know you're a heart momma.

jackieweldon

Lots of hugs your way!

My daughter had open heart surgery at 6 weeks old to repair a large AVSD. Its a tough thing to go through as a parent. I felt like I was a hundred years older than my friends (most of whom have kids too). It was hard. My advice is to lean on people who you love and will be there for you. I couldn't have gotten through everything without the support of my family and friends. We had another child at home, my husband largely stayed with him at night and on the weekends. Our parents stepped up during the day. Our daughter had a six week stay and I stayed almost the whole time.