Is Beckwith-Wiedemann Syndrome hereditary? The genetic component explained in plain language, reviewed against medical sources, with patient experiences.
Most geneticists are only just now exploring hereditary cases of BWS. My understanding is that this is thought to be rare. My personal case as a patient is that I passed it to 3 of my 4 children. Our geneticist had never seen another case like this.
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....
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...
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...