I also have fraternal twin sons (b. 2007) who both have BWS. All the of us have had tongue reductions and have gone through tumor screenings. Only one of us currently has issues with hemihypertrophy.
Feel free to ask me any questions you might have....
My daughter Bailee was born November 2014, she has Beckwith-Weidemann Syndrome, Full left sided Hemihypertrophy, and Congenital Junctional Ectopic Tachycardia.
My daughter was born with BWS hemi in August 1992. 5 1/2 weeks in NICU due to very low blood sugar. Took out 95% of her pancreas and she has had normal levels ever since. Surgeries later for tonsils/adenoids removal, 2 for lazy eye, stopped bone grow...
Cason was prenatally diagnosed with an omphalocele containing only bowel and an adrenal hematoma at 18 weeks. We had an amniocentesis done at 20 weeks and it showed no abnormalities. He measured very large for gestational age and always had his tongu...
2 people with Beckwith-Wiedemann Syndrome have taken the SF36 survey. Mean of Beckwith-Wiedemann Syndrome is 2703 points (75 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey
