Monday, February 11, 2013

Beckwith-Weidemann Syndrome

Lots of people wonder about Micaelyn and Elianna's special needs.  They both have Beckwith-Weidemann Syndrome (BWS), a rare genetic syndrome caused by a defect with chromosome number 11.  Like most genetic syndromes, there are multiple issues related to the syndrome, and a child with BWS will generally only display a few of the signs and symptoms of the syndrome.  This is the first in a series of posts I plan to do to help our friends and family better understand BWS.

BWS is an "overgrowth" syndrome, so many of the signs and symptoms are related to overgrowth.  Being that tumors are composed of an abnormal overgrowth of cells, it's not surprising that kids with BWS  have a greatly increased risk of childhood cancer.  Because the liver and kidneys are the most likely (but not only) places for tumor growth in BWS kids they received abdominal ultrasounds every 12 weeks to screen for tumors in both the liver and kidneys as well as blood work every 6 weeks to further test for tumor growth in the liver.

So while there are many aspects of BWS, this increased risk for cancer is one of the most prominent features of the syndrome, and almost certainly the most concerning.

I know there are many people that end up on my blog because they are searching for info on BWS.  Because it is not very common many people with BWS (or parents of children with BWS) have a hard time finding others who understand the syndrome.  In fact, many people even have to educate their physicians on BWS.  There are lots of blogs on adoption, older child adoption, special needs adoptions, orphan ministries, etc.  However, it is much harder to find a blog about BWS.  I hope to use my blog not only to show others just how greatly our lives have been blessed through our adoptions in hopes that more orphans will find families of their own, but I also hope those families who have stumbled upon my blog because they have been affected by BWS will find my blog helpful to them as well.

Enjoying the hospital Christmas decorations in December.  When you have to have blood work every 6 weeks and ultrasounds every 12 weeks for two of your children you might as well make the most of each trip to the hospital.  The kids love the gift shop the best!

My beautiful little girls.  When I see them I do not see special needs, I see special blessings!

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