The girl who loves life, even through endless surgeries,
It is the Christmas list of a 12-year-old: a phone and Beats headphones. Pink or rose gold ones would be perfect. Then, there are the wishes that don’t go under a tree. Kaleigh Wright-Barton has those, too. Less time on intravenous, another year without a major surgery, the family together under one roof, just not in a hospital. “Fingers crossed,” Kaleigh says. She says that a lot. “This is probably the first year that we’re a little at ease,” says Echo Wright, 30, looking at her daughter. “Normally, we’re so worried about your health, we just don’t know what could happen, but because you’re doing so well, we can expect to be home for Christmas this holiday season.” “Fingers crossed again,” Kaleigh says. Toronto Star readers met Kaleigh at Christmas three years ago. Only 9, she was a longtime patient at the Hospital for Sick Children, born with some of her intestines protruding through a hole near her belly button. It’s a condition called gastroschisis that causes abdomen walls to form incorrectly in the womb.
Often, those exposed intestines are surgically placed in the body but, in Kaleigh’s case, they weren’t functioning and were removed. That meant Kaleigh couldn’t absorb enough nutrition through her intestines, so she was fed supplements through an intravenous line near her heart.
That process, called total parenteral nutrition (TPN), is tough on the organs and led to liver damage. Two liver transplants are among the 17 major surgeries Kaleigh had in the first decade of her life.
“She’s a warrior,” says Jewell Barton, Kaleigh’s 33-year-old father. “I call her my little soldier.”
He was only 20, and Wright was 17, when Kaleigh was born. They’re from Nova Scotia and came to Toronto in 2005 for an assessment of their 4-month-old’s liver. They were told to pack for two to five days.
They’ve been here ever since, with their daughter in and out of Sick Kids. Kaleigh spent her first two Christmases in hospital, including one in intensive care.
The family was on the front page of the Star in 2014 when they planned to visit family and friends in Weymouth and Digby, N.S., for Christmas. Kaleigh was well enough to make the trip for the first time in three years.
But, just days before Christmas, the trip was scuttled. Kaleigh’s blood became infected, another common side effect with TPN. That usually meant two weeks in hospital.
The holidays were saved, however, when doctors at Sick Kids approved a plan to let Wright administer the IV antibiotics herself. She’d been trained by hospital staff. The family flew east on Dec. 24, arriving just ahead of Santa. “It’s a Christmas miracle,” Wright told the Star at the time. This season is more low-key. Wright and Barton are importing a bit of the Maritimes to their CityPlace neighbourhood apart- ment with a Nova Scotia lobster dinner planned for Christmas Eve.
The family, including Kaleigh’s little brother, J.J., and toddler sister Layla, will then bake chocolate chip cookies for Santa and, of course, put out carrots for his reindeer.
“We’ve got the plans in motion,” mom says. “We’ll have the best Christmas ever.” There is much to celebrate. Kaleigh’s health has been “pretty stable,” her mother says, and there have only been four in-patient visits to the hospital over the last year, usually because of an infection. There was one nine-month stretch two years ago without a hospital overnight. That was a record.
“I’m much better,” Kaleigh says. “I do miss out on more than I would want to, on some of the things I’d like to do like swimming, sleepovers, hanging out with friends, the basic stuff.”
Kaleigh attends school — she is in Grade 7 — but staying over at a friend’s house is tricky because she is on TPN 18 hours a day, and it has to be administered at specific times. But even that is an improvement on being hooked up around the clock as was once the case.
That doesn’t mean there haven’t been some adventures. Earlier this month, Kaleigh did something rare for her when she blasted down the water slides at Great Wolf Lodge in Niagara Falls. Her intravenous lines had to be sterilized after each foray into the water but, in all things, her parents try to balance the health risks against Kaleigh’s quality of life.
She also participated in the filming of those powerful fundraising videos for the hospital — part of the Sick Kids VS campaign, aimed at rebuilding the hospital — and can be seen running in the one where hundreds of kids come together with construction tools.
“You’d have to know it’s me to see me,” says the girl with the quick wit and infectious laugh.
With Kaleigh spending less time in the hospital, her father has more freedom as well. For a long time, he worked at a drugstore near Sick Kids so he could race to his daughter’s side at a moment’s notice. Now, he’s employed as a plumber’s apprentice. Wright is a full-time mom.
The family hopes that one day as Kaleigh grows and her intestines get bigger, she’ll be able to absorb enough nutrients on her own without the IV. She weighs around 90 pounds now and is just a smidge under five feet tall. She was 64 pounds three years ago.
“Realistically, a lot of people get (TPN) for a lifetime,” Wright says. “But our goal is to get her to eat enough and to absorb the nutrients from that food and, with that, we can get rid of TPN. But it’s hard.
“Right now, she’s doing well so she’s getting 80 per cent of her nutrients orally and 20 per cent through TPN.”
And there is another big dream that could be more immediate. Kaleigh hopes to get to Disney World in Florida, but for now, hydration issues that affect her kidneys don’t allow it.
“Hopefully 2018 will be our year and she continues to make a lot of improvements,” Wright says. “Who knows, maybe by the end of year we could get to Disney. It’s realistic.”
For those who remember Kaleigh’s tribulations and cared as she tried to get home to Nova Scotia three Christmases ago, Wright says there is something she’d like them to understand.
“I would love them to know that in all of her struggles and all of her illness, she never lost her smile,” says Wright, tears welling in her eyes. “She smiled right through it, every step of the way. She made it look so easy.”
“I always say that if an adult had to go through what she is going through, I’m sure . . . At least I know I probably would’ve given up. But she had hope and that gave us hope.
“I also want them to know that Kaleigh has a bright future ahead, all thanks to our donor. We always say, sign your donor card. Without a donor, Kaleigh wouldn’t be here.”