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31 weeks prego and son has Hypoplastic tricuspid and Rt Ventricle
Any advice for dealing with added stress of having a baby with hypoplastic tricuspid/ right ventricle? Anyone else have POSITIVE stories about this Dx? Husband and I are permanently relocating to Houston (Texas Children's Hospital) for birth and care of our son. Any experiences with the Cardio dept of Tx Children's, or birth at St/ Luke's TX Children's with baby with cardio issues? Thanks in advance!
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Re: 31 weeks prego and son has Hypoplastic tricuspid and Rt Ventricle
My nephew has tetrology of fallot. It includes right ventricular hypertrophy, which is different from hypoplastic, but I am not sure how. He has had two open heart surgeries, one at birth another at 8 months. He will have another most likely in the next couple of years. You would never know it except for the scars down his chest. He is 3 and thriving, eating well, and growing normally both physically and developmentally.
It was very scary when he was diagnosed because you just don't know everything. He was born and transferred immediately to Children's in Atlanta. They operated by the time he was 24 hours old. He went home less than 2 weeks later. He was operated on again at months for a "complete" repair. He was in the hospital for 1 week.
The only differences between him and another kids where that he was not allowed to be in daycare or around a lot of other kids, out and about until he was about 1 year old. My SIL has two older kids, so that was hard, but now, he is doing great.
There are actually a lot who have done well. We have met so many people in the course of Nephews treatment. Many do very well. Many kids with heart defects also have other issues, many of which you would already know about, like with Tetrology of Fallot, many kids have di George, but we are fortunate that Nephew has no other issues. We knew that before he was born. From what I have seen, think it helps a great deal to know before birth, so that the problems are fixed/monitored from the beginning, preventing the damage that comes from overworking the heart and lack of oxygen, also to have parents who are able to get the best care available and also giving good home care. It is very hard when kids like my nephew are born to parents who don't have enough resources, can't stay home or don't have time off or good childcare choices/family support. It makes a big difference in outcome. We feel truly blessed, and my family actively works to raise money to help those who are not as lucky. I can't see a person who works at the hospital that treated nephew without breaking into tears and thanking them (I live 1 mile from the hospital and DD goes to school on their campus, so it happens a lot more than you would think:-)
Infant cardio doctors and nurses are amazing. I wish you and your little one the best. Don't be at all discouraged by what you read on the internet. Pediatric cardio medicine has come a long way in the last 20 years and the kids who are treated now fair much better than they did before.
I am so sorry you are going through this. My son has Tetralogy of Fallot with Absent Pulmonary Valve and we also found out in utero. He had a rough start, including a 99 day hospital stay. But, he is now over 2 years old and has had no more hospital stays. He is still on a small amount of oxygen and a feeding tube. We didn't have to relocate, but delivered at a hospital about an hour away that could deal with the needs of our son's heart defect. We lived in the Ronald McDonald House during his stay.
There is another heart momma (Matkinson) who lives in the Houston area who had a son with a different heart defect who had many complications. I know she thought her son received excellent care at Texas Children's.
Let me know if I can answer any questions for you. We learned a lot about the heart world during our 99 stay in the Cardiac ICU. I will be thinking about you and your family.