Beckwith-Wiedemann Syndrome

We think it is possible that Grace has a condition known as Beckwith-Wiedemann Syndrome (BWS). It is a genetic condition that primarily involves overgrowth of several organs in infants. Not all children have all of the possible signs of BWS, but some of the most important ones include: omphalocele, macroglossia (large tongue), hypoglycemia (low blood sugar), high birth weight, Nevus flaemmus (stork bite), and ear pits/creases.
Grace does have quite a few of these, specifically the large tongue, omphalocele, high birth weight, "stork bites" and possibly ear pits and creases (although Deb and I disagree on the last two). Obviously kids can have these finding separately without having BWS. For example, millions of kids have the stork bites on the eyelids and forehead without having BWS. But taken all together, having 3 or more of these signs means a likely diagnosis of BWS.
For the most part, diagnosing Grace with BWS does not really change very much. Her care will be exactly the same, and we still have the same issues to help her with. Probably the potential for CP may be more of a hurdle than BWS, particularly since most children with BWS grow up to be perfectly normal adults. (Sorry about all the acronyms - get tired of typing it all out!)
There is one area, however, that is concerning regarding BWS. Children with BWS have a 1 in 5 risk of developing some childhood cancers. Usually a tumor of the kidney known as a Wilm's tumor is the culprit. Caught early, this tumor has a 94% cure rate, but curing it involves surgery and chemotherapy. For this reason, BWS kids are screened every 3 months with an ultrasound and blood work for tumor markers. Most of these tumors occur before age four. Screening is recommended up to age eight to catch the rare late occurrence.
If you are curious about BWS, there are some good websites that provide much better information than I can. Try here or here, or just "Google it."

From our standpoint, this doesn't make much difference to Grace's outcome or any difference to her place in our hearts. She will receive excellent care, she is loved beyond belief, and we have a wonderful support system in you all.