Darien family shares experiences with daughter's scoliosis
Most people who have scoliosis begin their treatment before they hit puberty, while their bones are still growing and there is danger of the spine curving further. However, for some, like one Darien girl, scoliosis can set in earlier, causing treatment to last for years.
Kaitlyn Kirby is like most 6-year-old girls -- she loves to dance and participates in summer camps -- the only difference is she wears a brace to help correct her early-onset scoliosis. Dr. Daniel Green, a pediatric orthopedic surgeon, said girls are more likely to be treated for scoliosis but it was still unclear what factors contribute to a higher risk for girls.
"Most common types of scoliosis happen during adolescence. There has been research conducted about the risk factors and it may be due to a some genetic component, but no one is sure what causes it," Green said.
In most scoliosis cases, any person who has a curve greater than 20 to 25 degrees will receive a brace. Green said there are some other treatments people have experimented with, such as doing specific spine exercises, but there wasn't any proof the exercises provided a long-term gain.
The brace Kaitlyn wears is specially contoured to her body and is nearly invisible when underneath clothing, Green said. In most cases, a person can stop wearing a brace when they stop growing. If the spine curvature doesn't get worse after a year, a person can take a break from wearing a brace, Green said.
"With general instructions, you have to wear the brace for 18 to 20 hours a day, but you may choose to have it off during a sport or activity," he said.
The longer a person wears the brace the more effective it becomes, Green said.
"If someone only wears the brace for 12 hours a day then it is not that effective," Green said.
When Green has to recommend a brace be worn for his patients, especially the younger ones, he often sees tears and some apprehension. However, when he is able to tell his patients they don't need to wear the brace anymore it elicits an entirely different reaction.
"I always see the biggest smiles when they hear they don't have to wear the brace," Green said.
Despite some of the initial negative reactions to wearing a brace, Green said he is surprised by how well his patients tolerate wearing one.
Most braces used today are called thoracolumbosacral orthosis, as opposed to the older models, which had a neck collar. Green said the brace with the neck collar is very rarely used for scoliosis patients.
Kaitlyn's mom, Kelly, said her daughter has adapted to wearing a brace but there have been a few tears.
"I would say she is doing phenomenally well for a 6-year-old. We do get a lot of tears and she says it's not fair," Kelly said. "We try to let her know it isn't fair and that life is usually not fair to everyone."
The hot summer weather has made wearing her brace especially uncomfortable for Kaitlyn and Kelly said there were a few days when she would get sent home from Holmes Elementary School because she was too hot.
"Even when it's September it's still hot so we are trying to keep her cool," Kelly said.
Kaitlyn started wearing her brace at the end of the school year and all of her classmates treated her well. Kelly said she alerted the school nurse and the teachers about her daughter's brace and the nurse gave a presentation on scoliosis to Kaitlyn's class.
"Her classmates know they can play with and hug Kaitlyn without hurting her," Kelly said. Kelly and her husband also made a trip to Holmes to speak with Kaitlyn's class and show them the brace Kaitlyn has to wear.
"Nobody is teasing her about the brace, yet," Kelly said.
To help ease Kaitlyn into the idea of wearing a brace, her parents bought her an American Girl doll and the people who made Kaitlyn's brace also made a brace for her doll, Kelly said.
"They made the brace look exactly the same as Kaitlyn's and they did it for free because they used recycled materials," she said.
One thing Kelly wished was available for Kaitlyn was a support group of young kids who were also dealing with scoliosis. There is a support group on Long Island but it is for older children, Kelly said.
"I'm trying to get in touch with other parents who have kids with scoliosis so the kids can see there are other people out there who also wear braces," Kelly said. "The toughest thing for her (Kaitlyn) is feeling alone."
Kaitlyn still enjoys dancing and Kelly said she does pilates once a week with her daughter.
"It's (scoliosis) not just a teenage issue. It's the added length that's hard for a little kid to understand. It can seem like a lifetime," Kelly said.
As Kaitlyn moves forward with her treatment, Kelly said people need to understand that Scoliosis does not define her daughter' life.
"It's important for people to know that scoliosis is just something she has and in so many ways she is just a normal, happy, 6-year-old kid," Kelly said.