I'm writing this partly as a journal type entry and also to inform others further who may have already heard. On Monday Derrick had a regular well visit. While we were there I had a few questions. One of which was....that I and other members of the family had started to notice a few things about Derrick. When he was born the nurse noticed that the right side of his chest was a little barreled (or a little bigger) Later his grandma noticed that his lower abdomen was a little bigger on one side as well. One day I noticed that his tongue kind of looked a little bigger on one side, and when my sister came over to hang out with us, she was playing with his legs and noticed that she couldn't get her fingers to touch on the one leg but she could on the other. So his leg was a little bit bigger. I told his doctor all of this and he went to get a measuring tape. He measured his face and found that it was pretty symmetrical. But when he measured his chest, it wasn't, neither were his tongue, tummy, or legs. (which we already knew) He then starts to put everything together and starts talking kind of fast. I kind of thought he would just have a simple explanation. But instead he told me that it was
Hemihypertrophy (the enlargement of one side of the body.)
Because this is present along with some other indicators he had, such as the the thing with his kidney, the
umbilical cord hernia, his tongue was a little bigger, he was 3 weeks early and at one point he was above the 90
th percentile, he was also diagnosed with
Beckwith-
Wiedemann Syndrome. There are only 1 in 13,700 infants born with it a year. Because he has this though he is prone to certain types of childhood cancer. Two main ones are
wilms tumor and
hepatoblastoma. He will probably need to have tests done every 6 weeks (blood) and 12 weeks (ultrasound) to check for them. He will probably have to have blood drawn until he is four years old. After then the risks for that cancer go down dramatically and he is no more likely to get it than you or I. With the other one he will still have to be watched until around age 10.
After the Dr. had determined that this is what Derrick had, he
immediately scheduled some tests for him the very next day. We already had an ultrasound scheduled from his
nephrologist the next day so he sent a request for them to do the liver as well. And a blood test. We went and had them done on
Tuesday and were worried about when we would hear from the doctors or if we should call. His pediatrician called us the very next day and said that every thing looked
ok this time. His levels from the blood test were a little on the higher side, but they had expected them to be. The only reason to
worry a little more is if they don't start developing a down ward trend, and start going up. This website
http://aladdin.wustl.edu/bws/bwsp.nsf has alot of information if you have more questions. His pediatrician also said he would answer questions that family or others had. (he is a great dr.)
It is still really hard to talk about. Every now and then I just find myself crying. I have to really try to keep my thoughts at bay and not get ahead of myself every now and then. I can't think of what could be. All I know is today. He is healthy and growing and very happy today. His smiles are everything. We love him so much and are very hopeful that every thing will work out well. We appreciate all of the prayers for our family and for our little D.
He likes to kick in the water!
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