Chilliwack mother deals with daughter's rare genetic disorder
Tahlia Tait had yet to reach her first birthday when she suffered a heart attack and lay in a coma for seven days.
For mom Shawnie Rodgers, this was the hardest step yet in the journey of Tahlia’s Williams Syndrome—a genetic disorder that, just six months before, she had never heard of.
“I had never heard of it until I was told my daughter might have it,” Shawnie says.
A genetic disorder that only affects one in 20,000 people, Williams syndrome is marked by distinctive and delicate facial features, including a small, turned-up nose, wide mouth, and big eyes. Williams syndrome children are typically also immensely friendly, energetic, and easy to get along with.
On the flip side, as Tahlia grows older she may have metal or physical disabilities—or not. She may have eyesight issues—or not. She may have continuing heart problems—or not.
Williams Syndrome has a wide spectrum of possible symptoms, making it difficult to pin down and even more difficult to know what to expect.
It’s been a tough road right out of the gate.
After her family doctor heard a murmur, a cardiologist found three defects in Tahlia’s heart. He warned Shawnie that her daughter might have Williams Syndrome, which often presents with heart problems.
During a diagnostic procedure last month, things took a sudden turn for the worse.
“She went into cardiac arrest and died for 25 minutes,” Shawnie says. “She was dead. She flatlined.”
The heart attack set off a moderate stroke, and Tahlia fell into a coma.
Because the stroke occurred in Tahia’s middle brain, which is responsible for emotion and movement, her doctors feared the worst.
“They basically told us she would be a vegetable,” Shawnie says, “that she wouldn’t come back from it at all.”
But she did.
Mother and daughter—who had yet to reach her first birthday—spent three weeks at Children’s Hospital in Vancouver, and after that went to Sunny Hill Health Centre for Children in a round of intense occupational and physiotherapy.
Tahlia’s recovery flabbergasted her doctors.
“We had another cardiologist appointment… and he was expecting to see a baby that was nothing like the baby he had seen before the incident in March. [But] she had pretty much made a full recovery.”
For now, it’s a waiting game to see what the Williams syndrome will throw at them next.
“It depends on the severity of her Williams syndrome. It’s going to be a long road for her,” Shawnie says. “She has heart surgery at the end of this month… and she’ll eventually need other surgeries, a lot of physiotherapy, a lot of occupational therapy. She’s going to have a hard time with school, from what I understand.
“I’m worried about putting my daughter in the local school system and what’s going to happen with that. I’m worried about resources in Chilliwack, because we don’t have that many—my daughter needs intense physical therapy and occupational therapy and we only see our physiotherapist once a month.
“I’m worried in general for her and her well-being and what’s going to happen in the future.”
May marks Williams syndrome awareness month, and Shawnie says awareness is the best she can hope for at this point.
“Williams syndrome is really rare. So we weren’t expecting it—we didn’t know,” she says. “It’s been a tough go, but I’ve had support.”
• The nearest Williams syndrome event takes place on June 1 in Abbotsford’s Mill Lake Park. You can learn more about the genetic disorder at www.caws-can.org.