← Return to White-Sutton syndrome

Discussion

White-Sutton syndrome

Brain & Nervous System | Last Active: Sep 29, 2023 | Replies (29)

Comment receiving replies
@bethbrown604

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!

Jump to this post


Replies to "Hi Deb, I know this thread is old, but our three month old son was in..."

Welcome to Connect, @bethbrown604. I can't imagine how difficult this has been, both for your baby and yourselves.

Unfortunately, Deb has not posted since 2018 and I'm not sure if you will receive a response from her, but am hopeful someone else chimes in with their experience. I'm not familiar with the syndrome but found White-Sutton Syndrome Foundation which shares family stories, research and other helpful information:

White-Sutton Syndrome Foundation -
https://whitesutton.org
Beth, how is your son doing now? Are his symptoms being managed?