When Megan Jones’s infant son, Wade, wasn’t gaining weight, she and her husband took him to a digestive doctor for testing. By complete coincidence, a geneticist walked by the doctor’s office during their visit and heard Wade’s distinctive cry.
“He sounded like a cat when he cried,” explains Megan. “When you’ve heard a baby with cri-du-chat cry, you never forget it.”
The distinctive mewl was instantly recognizable to the geneticist, and when Wade’s diagnosis was confirmed, the news was devastating: Wade would likely never walk or talk, and any development would be slow.
Cri-du-chat is a genetic disorder affecting around 1 in 50,000 people. Cri-du-chat (French for "cry of the cat") is usually not inherited, and families typically don’t have any history of the disorder; rather, it occurs randomly during fetal development when there is a deletion of part of a chromosome. Cri-du-chat symptoms and their severity differ from child to child and can include poor muscle development; growth, speech, cognitive and motor delays; and behavioral problems.
Wade was four months old at the time of his diagnosis, and Megan knew that he needed to see an early childhood physical therapist. While therapists for other ages are common, early childhood therapists are much rarer, so Megan thought they’d never find someone close to home in Monticello. For the first few months, they hired a therapist to travel from Champaign to their home.
Then, by chance, an old high school friend, Betsy, was joining Kirby Medical Center. Megan knew Betsy was certified as an early childhood physical therapist, so Megan contacted Betsy immediately. Wade was a little over a year old at the time and could barely sit up.
Weekly therapy sessions with Betsy began with the goal of strengthening Wade’s core so he could sit up. Betsy made therapy fun for Wade. Once he was sitting and could begin crawling, Betsy used lots of supportive equipment like wobbly boards to crawl across so Wade could try to keep his balance, and there were always lots of balls to play with, which Wade loved.
“Therapy can be hard, and there can be a stigma attached, but only positive things come from it,” Megan says. “When we got our diagnosis, if you would’ve told me that Wade would be walking at the age of three, I wouldn’t have believed it.
“It can be overwhelming, and you just have to focus on one thing, one day at a time, and not let it overwhelm you. Sometimes, if you look at the big picture, it can be frustrating because you’ll only focus on the bad things and get upset, but the therapists are great. They’re trained and know what to do and keep pushing forward.
“Sometimes, as a mom, when your kid is crying, it’s hard to watch, but I knew in the end he was only going to get stronger because of it.”
Wade is now three and a half years old. He’s graduated from his early childhood therapy sessions with Betsy and attends preschool, where he can continue his therapy and development.
Megan and her family have joined a cri-du-chat group on Facebook and have gotten to arrange visits with other families around the Midwest, as well as attend an annual conference where around 70 families from all over the world get together to offer each other support, friendship and understanding.
Megan says, “People say to me, ‘I don’t know how you do it,’ but when you’re in the situation, you adjust. You have to. It’s never easy to get a diagnosis like that, but we are both teachers and have been around kids with different abilities for a long time. In our field as educators, we see on a daily basis that kids are capable of a lot more than people sometimes expect of them.”
Friends of Cri Du Chat Facebook Support Group is a non-medical support group open to parents of children with cri-du-chat, as well as parents’ close connections.
Kirby’s therapy services include physical and occupational therapy for children and adults. Call (217) 762-1830 for more information or visit Kirby’s website.
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