Olivia Gillies was born withh Beckwiths Wiedemann Syndrome(BWS). Doctors spotted the unusually large size of her tongue while she was still in the womb. This was the fourth child born to a 27 year old mother from England.
Olivia’s life was at risk because her tongue could suffocate her. She had a tracheotomy until she was old enough for surgery to reduce the size of her growing tongue. Her first surgery was at 6 months and she was in the hospital for 4 months until her Dad left his job to be her full-time caregiver learning how to tube feed his now ten month old daughter.
Within the year, she needed another surgery. She still couldn’t eat, talk or smile. She communicated with sign language. After the third surgery, doctors believe her tongue has stopped growing.
About 300 children with BWS are born each year in the United States. Children with BWS are at risk for cancer during early childhood and should receive cancer screening during this time. Most children with BWS do not develop cancer and the vast majority of children who do develop cancer can be treated successfully. Children conceived through In vitro fertilization have a three to fourfold increased chance of developing Beckwith–Wiedemann syndrome. It is thought that this is due to genes being turned on or off by the IVF procedures.
I have seen people with enlarged body limbs caused by this disorder, but I never heard of this disorder affecting the tongue. Everyday there is something to learn!
Read more about Olivia Gillies and see photos of her family.