Welcome to Connect, @debmac. I can understand the mixed feelings you must be experiencing. It has been a long road for you and your family. With the diagnosis, will there be any changes in her care?

Having a diagnosis at long last doesn't mean any changes in her care it has indeed been a long and difficult road and continues to be with fresh challenges that come with being a young adult I've got so many questions going round in my head but we're not seeing the genetic team till September after they've completed some more tests I do however find comfort in the fact that there are other families out there who understand and finally we are not alone!

Hi Deb, I know this thread is old, but our three month old son was in the hospital with a bran hemorrhage and seizures a week after birth. He was full term. We recently received the diagnosis of white Sutton syndrome due to the genetic testing they did in the hospital... although it was by chance because his official diagnosis was meningitis (although every culture came back negative). I was wondering if you could share a little about what happened with your daughter and her hemorrhage and her history as she then grew with both conditions. Thank you!