SWANTON — When Precious and Matt Cadieux were given an after-office appointment with their geneticist for their three-month-old baby, Maddie, they had a feeling of foreboding.
“We knew something not so good would come out of this,” Precious Cadieux said in an interview on Friday.
The couple found out that their daughter had Mosaic Trisomy 18, a variation of the genetic condition Trisomy 18 in which a child is born with three number 18 chromosomes instead of two in some, but not all, cells in the body. The condition usually causes children to fall behind developmentally, and it is often fatal to babies.
The couple’s geneticist told them to not look up Trisomy 18 on the Internet, or if they did, to only look on WebMD.com.
The couple did, of course, look it up, and they came to terms with what lay ahead. “It was a long night,” Cadieux said. “[But] things worked out.”
Maddie is now six and a half years old. She’s a bit small for her age, and she looks at you with big, bright blue eyes and a large smile. Right now, there’s a gap where her two front teeth should be – they just fell out and were handed over to the tooth fairy to make way for new ones.
When you talk to Maddie, she smiles even wider and her stare intensifies. She might answer your question, or give you a hug instead. And then she might ask you some questions, like whether you’re cold, or what you’re doing, or why you’re doing it. Then she might draw you a picture.
She’s an inquisitive, curious kid.
“She’s doing very good,” Cadieux said. Maddie has far fewer doctor’s appointments than she used to – over 100 before her first birthday – and she’s learning developmental skills, even if they’re a little behind.
“She picks up on things at her own pace,” Cadieux said. “She’s getting there.”
While this age is the closest Maddie will be to her peers, her mother understands that the gap will widen once Maddie grows older. Even Maddie’s four-year-old sister, Makena, is starting to catch up to her big sister.
“[Maddie’s] wondering, why can’t I do that?” Cadieux said. She encourages her younger daughter to help her older one, but she has concerns about what will happen as Maddie’s schoolmates grow older around her.
“I’m worried what her peers are going to think of her,” she said. “I just worry about her feelings being hurt. It’s going to be hard.”
Cadieux has been working with the Swanton Elementary School, where Maddie is in kindergarten, to come up with ways to help Maddie get the best education, and to be comfortable with her peers.
“We don’t want her to be known as the kid with Trisomy 18. She doesn’t feel that way now – to her, she’s not that different from anyone else,” Cadieux said. “And she’s not, really.”
It’s difficult, however, since educators and even doctors in the area have little experience with the condition. Maddie is one of two children living in Vermont with Trisomy 18. Up until this year, she was the only one for more than a decade.
So, Cadieux has been going to the Internet to connect with other parents who have children with Trisomy 18.
“It’s just wonderful,” she said. “There’s a lot of support there.”
The family is planning a trip to meet the other Vermont child with Trisomy 18, Cora, of Randolph Center, in the near future.
Cadieux has introduced Maddie to other children with the same condition in the past, and she has also created a binder full of Maddie’s doctors’ appointments, letters to her daughter, and other documents that will help Maddie eventually know how Trisomy 18 has played a role in her life. Cadieux doesn’t want Maddie to be defined by her condition, but she does want her daughter to understand it.
Through the Internet, Cadieux has also been able to glimpse what Maddie’s future may look like.
“We look at the older ones,” Cadieux said, including some people with Trisomy 18 who now have their drivers’ licenses, who are functional, and who are currently in their 30’s.
“That kind of helps,” Cadieux said.
The family also attended last year’s Support Organization For Trisomy 18, or SOFT, conference, where they saw many other families and children handling Trisomy 18. There, Cadieux recognized that Maddie was doing exceptionally well walking, talking, and learning new skills.
“It hit. [Those other families] could be us. It worked out,” she said.
As for Maddie’s future, Cadieux said she hasn’t thought too far ahead. She’s happy for every step her daughter takes, and is happy to focus on those steps without predicting what will happen too far ahead. “One day at a time,” she said.
But Cadieux is noticing the progress her daughter has already made. For instance, Maddie has been learning how to potty train, and has been finding success.
“We basically broadcast is to the world that she went on the potty,” Cadieux said.
Cadieux also mentioned that others are observing the distance Maddie has already covered. “A lot of people see a lot of change in her now,” Cadieux said. “She’s come a ways.”
That continual progress seems to be Cadieux’s abstract vision for her daughter’s future, a progress that may be slower, but not stunted. “I’m pretty confident [that] she’ll be able to do it all,” Cadieux said. “She’ll just do it all late, that’s all.”