Newfoundland baby with rare disorder to have surgery in Toronto
Friends and family of ninemonth-old Kaden Miller are raising funds for him and his parents, Cory Miller and Kristel Vankoesveld of Conception Bay South, to travel to Toronto this month to meet with Dr. Christopher Forrest, division head of plastic and reconstructive surgery at the Hospital for Sick Children.
Kaden was diagnosed with Beckwith-weidmann syndrome (BWS), a rare overgrowth disorder, shortly after his birth. His tongue is enlarged on one side.
Initially the family was told it could be up to a year to see a specialist. Then, in July, they got the call with an appointment to see a doctor at the Sick Kids hospital.
The family will fly to Toronto on Oct. 16. Kaden is expected to undergo surgery on his tongue on Oct. 22.
Vankoesveld says she hopes the surgery will improve Kaden’s ability to drink and chew food, and resolve breathing issues caused by the disorder.
They hope to return to Newfoundland on Nov. 4, but Vankoesveld says that will depend on how quickly Kaden recovers following surgery.
The couple’s seven-year-old daughter, Kristiana, will stay in Newfoundland with her grandparents.
“It pulls at your heartstrings,” Vankoesveld says, “because you have to be in this one spot with a baby that needs this surgery and needs to recover, but you’ve also got to think about your other child and your family, how this is kind of uprooting it, even for whatever amount of time. It’s hard.”
Vankoesveld said she and Cory were shocked when doctors confirmed their son had BWS.
“It was devastating,” she said. “We had no idea that anything was wrong. When I was pregnant there was no indication of anything, and then to be told that he has this rare genetic disorder…”
She explained there were three main factors that led doctors to test Kaden, one of which was his weight at birth — he was 11 pounds and seven ounces.
“He also had other signs of BWS, which is a crease in his ear … and his tongue was larger on the one side,” his mother explained.
Blood work also confirmed the doctors’ suspicions.
According to information found on the website for the National Organization for Rare Disorders (NORD), BWS is a rare overgrowth disorder, and is characterized by a wide spectrum of symptoms and physical findings that vary in range and severity from person to person. However, in many individuals, associated features include above-average birth weight and increased growth after birth, an unusually large tongue, enlargement of certain internal organs and abdominal wall defects.
Kaden will be watched by a team of physicians until he is eight years old.
“Every three months he has to have blood work (and) … ultrasound because with this syndrome (there is) a higher risk of children developing cancer.”
Vankoesveld says Kaden’s birth was scary, and it was a difficult delivery.
“We almost lost him,” she said.
For information on how to donate to the family, contact Alice Miller at 709-277-5592 or by email at ally_miller@hotmail.com.