Hi, I just joined today. When my youngest son Liam was born on Sept
8 this year, I was told he might have Beckwith-Weidemann Syndrome. I
have found out today that there are multiple overgrowth syndromes and
we will be going to Sick Kids to have testing done probably in the
New Year. My older son Rowan(Nov 21, 2000) may also be affected. My
daughter Aidan (March 12, 1999) seems to be fine.
Here's some info ..
While I was pregnant with Rowan I had polyhydramnios. He weighed 10lb
1oz at birth (39 wks) by c-section and was about 21.5" long. His head
was 40cm around. He continued to grow above the charts. He also had
seizures after birth. He is now about 46" tall, and weighs about
65lbs, built like a quarterback. His head is still bigger than
average. He is slightly delayed in a few areas and shows signs of
PDD, ADHD, and/or ODD and we are currently working on a diagnosis for
that..
Liam was born at 36 wks 5 days and weighed 9lb 12.3oz, and was about
22.5" long. He was also born by c-section and had a head
circumference of 40.5cm. I also had polyhydramnios with Liam, though
not as severe. He has an enlarged liver, has been hypotonic since
birth and is also slow in his motor milestones. He was also
hypoglycemic and has a heart condition (Atrial Septum Defect). He did
have a PDA which resolved itself. He is now 10wks old, is approx
25.8" and weighs about 14lbs.
I was never given a reason for Rowan being the way he was and we just
attributed it to the fact that big babies are common in my family &
daddy is 6'4". However, when Liam was born, the drs said it could be
Beckwith-Weidemann. It was then that I started to think that Rowan
could be affected too. Liam looks identical to Rowan! I am hoping to
find some answers soon, but in the meantime I'm looking for support
and information.
Krystal