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clotting, support groups, info on fontan procedure
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clotting, support groups, info on fontan procedure

I have a 10 month old girl diagnosed with tricuspid atresia. She has an undeveloped left ventricle. She is being seen at the Clinic.She was on laysix until 6 months of age and is presently only taking iron supplements.  Her present oxygen sats is around 80-83 and is very active 15 pound bundle of joy.
  At 7 days old she had a balloon septostemy (to maintain a whole in her heart & which I believe is  necessary for a future fontan surgery) Is the term for that wholea VSD?
I have read in different places that these "holes" in the heart should be closed to prevent possible clotting which could cause other serous problems. Should I be concerned?  
  Is there a local support group for parents who have children heart defects? Do you have any suggestions on where I could go on the internet to find out outcomes of children who've had this fontan procedure and learn more about what may lie ahead for us?    

Thanks for your time
A concerned mom
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VSD stands for ventral septal defect which is a "hole" between the two lower chambers of the heart.  In normal hearts the larger ones of these need to be closed but in your daughters case is necessary for her circulation until she is old enough to undergo corrective surgery.  There is a very low risk of a blood clot traveling from one side to the other but it is not high enough to be treated with blood thinners. I don't know any support groups in the Cleveland area but perhaps someone else reading this does or your child's doctor's office may know.
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