Newborn with severe heart defects

[atkinson4738]

I posted a question a couple of weeks ago when my 3 week old son was diagnosed with branch pulmonary stenosis.  Since then he has had an MRI and an Angiogram.  They have now given him the diagnosis of "severe diffused hypoplasia of the pulmonary arteries, aortic arch, and descending aorta".  The pulmonary arteries are about 1-2 mm in size and the aortic arch and descending aorta are about half the normal size.  After this diagnosis they said there is nothing they can do surgically to fix it and he probably won't make it.  They also said this is extremely rare.  My question is has anyone seen this diagnosis before, and what is the outlook?  Any suggestion on treatment or any resources that could help me?  I can't find any information on it and I want any other opinions I can get.  Some are telling me he may survive a few months or over a year, but then another cardiologist told me she has seen less severe cases spontaneously fix.  Any help would be greatly appreciated.  Thanks

Justin

[1mommy]

You need to go to Lucile Packard Childrens Hospital in Palo Alto, California. There is a pediatric heart surgeron there named Dr. Frank Hanley and he is known for doing surgeries on children with pulmonary stenosis. Trust me, I know my daughter has it and she has had 3 heart surgeries so far.

[jkc66]

Sorry, that cardiologist is JOSEPH PERLOFF.  GOOGLE HIM - THERE ARE DIRECT LINKS TO HIM - HE IS THE GUY ON CONGENITAL HEART DEFECTS.  HE LITERALLY "WROTE THE BOOK"  GOOD LUCK!!

[jkc66]

Dr David Perloff is at UCLA Medical Center in LA. There is a phone number you can call on their website.  Ask your cardiologist if they know of him.  If not, you are in the wrong place.

[jkc66]

You want to try and see anyone associated with a congenital heart expert by the name of Perloff.  My sister was born with congenital heart defects that he was able to fix. Her prognosis up until that time was heart lung transplant - You need to do the research. You are your childs best advocate.

[Douglas Bogart, MD]

The best advice I can give you is to take your son to a center with a large experience in severe congenital heart disease and get their opinion.