Brigh was born November 8, 1999.  She exhibits the classical characteristics of BWS (omphalocele, macroglossia, enlarged liver, pits in ear, stork bites).  We were told about the syndrome after an ultrasound in which the DR's saw an omphalocele.  On top of all this news, I developed pregnancy induced hypertension and was preeclampsic.  I was hospitalized 31/2 months on bed rest due to this.  Brigh arrived at 28wks gestation weighing 2lbs. 11oz.  The stories of other families mean so much to us.  We did not know what to think of all this information and what the future would hold.  You all are truly a needed source and I can only hope that we all learn so much information from each other for our children's sake.  We have been quiet readers for sometime now and I wanted to share this picture of Brigh with you all.  By the way, Brigh is pronounced like 'high' or 'bright' without the 't'.  Just thought I'd note that because so many say it as 'Bree'.

Well anyway we are in St.. Louis and so the information about Dr.. Marsh made us feel wonderful knowing that he is right here in our home area.  Brigh was at .... Children's Hosp.  and from what I understand Dr. Marsh is at St. Louis Children's Hosp.  so we are trying to see about out of network possibilities with insurance. 

Praise God Brigh has not had any feeding issues and has to be on her stomach to sleep so there is no airway obstruction. Her omphalocele was repaired immediately after birth and now resembles an umbilical hernia.  She is to have that surgically repaired also.  However, we are concerned rather or not to do that just yet if we are going to do the tongue reduction surgery.  The umbilical hernia is not as distinctive as it was when she was smaller.  Her belly button looks like a marshmallow (for lack of a better word). 

Well, again as a family we say thank you for sharing. 
Brigh's Family