Originally Posted by Sheree68
My brother is a beautiful 24 year old downs syndrome and was born with a very large hole in his heart
He has developed a very large hernia in his groin the size of a football. We where told that any operation was to dangerous for his heart 50/50 chance Now the specialist has told us that the hernia is so big now , it can cause strangulation and be very dangerous ...
Any information, advise, opinion are welcomed as we are very confused as what to do
Wow- Your post was several months ago, how is your brother doing? My 18 year old son had two holes in his heart- one in the upper and one in the lower chamber of his heart and his tricuspid valve was repaired as well as his Patent ductis artirius. Open heart surgery was done when he was five months old (amazing!) and besides other medical challenges his heart surgery was a success!
If the hernia situation has not been taken care of yet- I needs to be. And heart repairs are so much more advanced now- you might want to check with another specialist. Our cardiologist was Dr. Kirkpatrick in San Diego California. He is the most caring and supportive doctor I have met. As far as insurance coverage is concerned- I had Cal Optima/ Medi-Cal through our states social services. My son's father has been absent all of his life and when the state has been able to locate him (with his SS# and DL) and garnish his wages, they do. In fact he is still paying back support even though my son turned 18 this year.
I pray that your brother is doing better and I hope this info helps-