@lyn02 Wall of text incoming!
TL;DR my son was born with Down syndrome along with several heart defects that required 3 heart surgeries to fix.
I’m so sorry you guys are going through this. It’s hard but try to stay positive and ask as many questions to the cardiac team. You guys WILL get through this, I promise.
My wife and I went through something similar 3 years ago. At her 20 week ultrasound they noticed some issues with our sons heart. So we came back the next day for an echocardiogram of the babies heart and it was revealed that he has a giant hole in his heart (AVSD - Atrioventrical septal defect, DORV - double outlet right ventricle, and Pulmonary Stenosis). Essentially none of his chambers closed so deoxygenated and oxygenated blood were fully mixing and we were told he will most likely need surgeries to correct. Along with this we were told that some other markers indicated he may have a genetic disorder as well. We did the genetic testing and sure enough it came back with a 98% probability for Down Syndrome.
Noah was born via C-section at 36 weeks & 6 days and after seeing him, he was quickly rushed away to the NICU. He was born with Down syndrome and all of the heart defects they had spotted in Utero. He ended up having tet spells and was diagnosed with Tetralogy of Fallot as well and needed a surgery immediately to help him breathe better. They did a BT Shunt surgery which allowed his lungs to get more blood and after a 3 week stay in the hospital we were sent home. Now he did also having swallowing issues so he was being tube fed through an NG tube and he needed to be on supplemental oxygen.
Honestly at the time we didn’t know how we would ever do this. We were constantly in and out of the hospital the first year and he ended up having 2 more open heart surgeries to correct the hole in his heart. His NG tube was upgraded for a GTube (connected directly into his stomach) and slowly his life was getting better.
Now he’s 2 1/2 years old and he’s doing AMAZING. Hes off of oxygen, he tolerates his GTube feeds and is slowly learning how to eat by mouth. He hasn’t had heart surgery for over 1 1/2 years. He’ll need surgeries until he’s an adult but so far he’s holding steady. He’s very delayed but this kid is our absolute joy in life. We see his struggles and see how much effort he puts in his therapies and he works so hard everyday. We couldn’t be happier. Our whole family roots for him and he’s always the center of attention.
It’s not an easy life. There will 100% be challenges in your life but know that it will be so so rewarding. People may look at my life and think it sucks. And to be honest at times it does BUT we are so happy and really can’t imagine our lives without our son.
We did discuss termination and the doctors did a good job of giving us realistic outcomes. Reading what other parents went through in our FB groups really helped us be more positive about his diagnosis and our decision to proceed with the pregnancy. That decision is ultimately up to you.
Go into that meeting tomorrow with an open mind and ask all the questions you can think of. Here’s a few I would definitely ask:
- what kind of surgery will be required?
- how many surgeries will be needed?
- what are the risks of surgery?
- how long do babies with this condition typically stay in the hospital after birth?
- how many cases have you seen at your hospital with heterotaxy?
- what is the survival rate?
- is there any indication of other organs being effected?
- will the baby be in the NICU right after birth?
- Does the NICU have individual private rooms or do they have pods? (I would 100% opt for a hospital who has individual private NICU rooms. Pods just don’t give you or your baby any privacy and introduces outside risks from other parents in that environment)
- is a natural birth still possible or will a C-section be required?
Also, look into getting your wife on Medicaid. I’m not sure what the rules and regulations are in CT but I believe they don’t turn down Medicaid for Pregnant women. My wife was able to get on it and it’s been an absolute life saver. My sons surgeries and hospital stays have cost in excess of $2Million and it was thankfully all covered ! Once the baby is born, if mom is on Medicaid, the process for getting baby on Medicaid is super fast. Since your child will likely be born with a disability, they will qualify for Medicaid so even if wife isn’t on it, you can get it for your child.
Another thing to add is that if you are considering to keep your child, don’t opt for an amniocentesis since that does carry a miscarriage risk.
If there are other childrens hospitals in the CT area, I would recommend reaching out and getting a 2nd opinion. We did that as well and chose the hospital with the team that we felt would give the best care for him and for us.
Feel free to DM me with questions or just to talk things through.
I pray for the best outcome for you and your child!