Beckwith Wiedemann Syndrome

Dominic McFadden

dommyjohn — Tue, 21 Apr 2009 01:31:17 -0400

My husband Grant and I have been married 3 years now and we have two children. Dominic who is 2yo and Sebastian who is 3yo.

Kaylyn Shuster

Kaylyn Shuster — Tue, 03 Jun 2008 15:43:45 -0400

Kaylyn Rachel Shuster

Diagnosis: 29- week preemie; tracheotomy tube due to laryngomalacia and enlarged tongue since 5/13/03; g-tube since 5/13/03; hydrocephalus due to grade III/IV brain bleed; VP shunt since 3/8/04; Beckwith Wiedemann Syndrome; mild cerebral palsy; developmental delays; hypotonia; reflux

Leah Holtz

Leah Holtz — Tue, 08 Apr 2008 18:46:16 -0400

Leah and Miri, our identical twin daughters, were born at 35 weeks on 17/2/97. Miri had a large protruding tongue, but Leah was the most beautiful perfect baby you ever saw. Miri had feeding problems quite early, so couldn't breastfeed and took 1 hour to drink from a bottle. They came home with me after 7 days and were more or less OK until 2 months of age. In hindsight, their breathing had probably been very bad for quite some time. Miri was in hospital for 4 months and Leah for 5 months.

Miri Holtz

Miri Holtz — Tue, 08 Apr 2008 18:27:55 -0400

Miri and Leah, our identical twin daughters, were born at 35 weeks on 17/2/97. Miri had a large protruding tongue, but Leah was the most beautiful perfect baby you ever saw. Miri had feeding problems quite early, so couldn't breastfeed and took 1 hour to drink from a bottle. They came home with me after 7 days and were more or less OK until 2 months of age. In hindsight, their breathing had probably been very bad for quite some time. Miri was in hospital for 4 months and Leah for 5 months.