Beckwith-Wiedemann Syndrome is a genetic condition that causes excessive growth. It’s linked to birth defects and even cancer. But thanks to innovative surgical procedures, children born with BWS can now live normal lives.
“She was always sticking her tongue out in the ultrasound,” said Tracie Casserly, whose daughter, Katie, has BWS.
When Katie and her twin brother were born, her parents learned why Katie’s tongue was protruding. She had Beckwith-Wiedemann syndrome, or BWS.
“You think about are they going to live a normal life or not,” Tracie said.
Chad Perlyn is a pediatric plastic surgeon at Nicklaus Children’s Hospital in Miami, Florida who specializes in BWS. Dr. Perlyn explained, “If you have a large tongue that’s blocking the airways, you can’t breathe.”
BWS also causes asymmetrical body growth, increased risk of tumors and low blood sugar. But, there is hope. “The thing I tell parents most is that we can fix their child,” said Dr. Perlyn.
Before Katie was two-years-old, doctors surgically reduced the size of her tongue and when she was 13, they performed two surgeries to regulate the growth of her legs. Katie also needed chemo to beat liver cancer. Still, she said she’s grateful those treatments were available.
Katie said, “I don’t think I would have been accepted as much socially than I am now. I really haven’t been bullied at all.”
Today Katie is a happy, healthy 16-year old. A straight “A” student whose appearance bears no trace of the condition she was born with.
Tracie said, “If you have to have a syndrome, this is the syndrome to have.”
Sometimes the mutation that causes Beckwith-Wiedemann Syndrome is inherited and sometimes it occurs after conception. Katie’s BWS was not inherited so doctors said she would not pass it on to her children.