Hypoplastic right heart syndrome/tricuspid atresia

Re: Hypoplastic right heart syndrome/tricuspid atresia

• xooemilyrose member

  October 2014

  I'm frazzled. I didn't mention that he will have to undergo 3 heart surgeries at least by the time he's 2 and the doctor that diagnosed him didn't really give me any positive insight. He said moms usually decide to terminate pregnancy at this point but I refuse to give up on my baby boy that God gave me especially because he knows I will do what I can to make this love bug survive and have a great life as much as I can.

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• xooemilyrose member

  October 2014

  I have an appointment Monday with children's hospital of pennsylvania. It's going to be a long weekend

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• jackieweldon member

  October 2014

  Hugs!
  
  Our daughter was born with a congenital heart defect as well, though different than yours. Ours was a tough road to travel but she only had one surgery at 6 weeks old.
  
  I suggest checking out the Babies and Children with Heart Problems board on Babycenter.com

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• jackieweldon member

  October 2014

  Oh, and there's a woman with HRHS that posts there occasionally! She's in her late 20's and doing really well!

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• CaptainSerious member

  October 2014

  My son had a different congenital heart defect, which is usually surgically fixed at birth. However, he was born in Peru to a mother who had no prenatal care and could not afford any medical care later, either, and the defect was never discovered. He later entered an orphanage, where he was believed to be a healthy child. He routinely participated in all activities, including playing soccer with the other kids.
  
  It wasn't until he was 7 years old and underwent a physical during which they took his blood pressure that someone noticed a problem. He has such a severe coarctation of the aorta that he was getting almost no blood to his lower body, and had extremely high blood pressure in his upper body. He also has a tricuspid aortic valve.
  
  We adopted him shortly after that, and he had corrective surgery within weeks of bringing him home. his condition was so severe his doctors couldn't believe he was still alive. It is now more than four years later, and he is almost perfectly healthy, with no restrictions on activities.
  
  I tell you all this, because I am a big believer in second opinions. It is very possible that the doctor was informing you about termination as a possibility because he wanted to share all your choices with you, but I would never make a decision without first talking to a specialist. My son's surgery was performed at the Children's Hospital of Philadelphia, and I'd recommend them if you are nearby.
  

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• brachysira member

  October 2014

  We just had a baby who was suspected of having this, but did not.  I think it is possible to get an accurate diagnosis, but we had insurance problems so didn't have time to get approved for an expert ultrasound.  I understand it is quite a long road.  As I understand it, the outcomes of surgeries is quite variable based on the quality of the surgeon and surgical center, so find out what you can on this.

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