Prenatal diagnosis for my baby-Right atrial isomerism.asd.pov.Tapvd (infradiaphragmat

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nervousmummytobe
Regular Member


Date Joined Oct 2012
Total Posts : 75
   Posted 8/22/2014 1:30 PM (GMT -6)   
I'm 23 weeks pregnant and found out my baby has a complex cocktail of heart abnormalities.

Right atrial isomerism/ heterotaxy
Tapvd (infra diaphragmatic ) - blood draining below the diaphragm
Compete ASD
Pulminary vein narrowing / obstructed ( POV)

I've been painted a pretty bleak picture and at the moment they believe is impossible to save him with surgery . I'm seeking other opinions .

Anyone know about this mix of defects?
Am I in the right group!

I just need hope :-(

jdiane
Veteran Member


Date Joined Jan 2003
Total Posts : 1157
   Posted 8/22/2014 5:50 PM (GMT -6)   
I don't know anything about the diagnosis. If you don't mind me asking, where are you being seen? Is it in conjunction with a Children's hospital?

I can't imagine how scared you are. I'm an adult (38) that was born with a heart defect, not nearly as complex. VSD and Bicuspid Aortic Valve Disease. Pediatric cardiology has come so far, that it amazes me. I work for a pediatric hospital ranked #4 in heart care and surgery.

I wish the best outcome for you and am happy to suggest hospitals if you are able to travel. I know some don't trust the US News list, but I've been to Boston, Philadelphia and work at Atlanta and know they are all amazing, as are many others on the list.

Best of luck to you and baby!

http://health.usnews.com/best-hospitals/pediatric-rankings/cardiology-and-heart-surgery

pvct
Regular Member


Date Joined May 2014
Total Posts : 128
   Posted 8/22/2014 11:05 PM (GMT -6)   
i am not in a position to give you professional advise, however, I would not hesitate to get a second opinion. once upon a time a doctor, an internal med and a radiologist
said that my mother never had a chance when first diagnosed with pancreatic cancer -- well, we took her to Johns Hopkins and quess what -- they performed a 9 hour whipple procedure that saved her life. Don't give up hope. best of luck to you.

Post Edited (pvct) : 8/22/2014 10:34:20 PM (GMT-6)

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