Christmas provides a little normal activity right now in the lives of Colby Gaye, right, and his mother Kayla Thompson as they prepare for a major medical procedure early in the New Year.
Her three-year-old will eventually need a new heart, but there’s no time for his mom to even think about that right now.
In nearly a month, the family embarks on the next leg of the journey to good health for Colby Gaye.
After agonizing over input from medical personnel and weighing out the pros and cons of such a significant procedure on her already fragile little boy, Colby’s mom, Kayla Thompson, booked him into Sick Children’s Hospital in Toronto for an open-heart surgery called the Ross Procedure.
The procedure is essential because of muscle damage on the left side of his heart, having been born with a very rare heart defect called critical aortic stenosis.
The condition causes blood pumping issues on the left side of his heart, “something like a kinked hose,” his mother describes it.
The condition as diagnosed when Thompson was eight months pregnant, and the medical battles have been ongoing ever since.
The battles began in a whirlwind when Thompson went for an ultrasound after slipping and falling outside.
“The ultrasound seemed like it was taking a little long,” she told the Advertiser Thursday in the midst of tending to the early morning requests of Colby and his six-year-old-brother, Caleb, who was home from school for the morning. “There were nurses running around and the doctor was on the phone … I knew something was going on, and I was really nervous.”
From there it was off to the Janeway Children’s Hospital and within a week on they were in Toronto.
It had been determined that Colby could not be born in this province with his condition.
He was born May 24, after Thompson spent more than a month in Toronto for observation. His first balloon treatment to improve blood flow came at three days old.
Thompson was buoyed by the prognosis though, despite Colby’s challenges.
“His cry was the strongest they’d heard, and he didn’t need any medication,” she explained. “I even had him in recovery for a half hour, although I didn’t get to hold him.”
Colby spent three weeks in intensive care and “wasn’t doing well coming off life support,” she noted. In fact, the recovery lasted until August when mother and child finally got to return to Newfoundland.
Subhead – Support systems
The hospital visits have been virtually continuous since then.
In fact, this summer some seizures he encountered brought a new dynamic to Colby’s battles.
While treating the seizures, doctors discovered the heart enlargement. Now ballooning to increase flow is out of the question.
Thompson said there is a realization that the only way to “fix” her son is the transplant, but that can’t come yet because of his extenuating conditions.
Thus, the upcoming surgery.
At five per cent, the mortality rate from the procedure is relatively high, she noted, but after weighing the options, the decision was to “just book it.”
“He’s doing really well, he’s active and smart, but he’s very sick inside,” she said while tending to the typically active and inquisitive toddler.
Thompson is preparing mentally for the newest round of health battles for the family, but tries to keep life as normal as possible.
“Christmas will go on as normal,” she said of her preparations for the holiday season. “Santa will have to bring lots of things that are packable.”
Both her sons will be taking the trip to Toronto, as well as some family members.
In fact, Thompson notes the family, community and co-worker support has been “amazing” right from the beginning.
She had received financial and other support since the start and despite the fact that she has been holding down two jobs and working extra hours to make ends meet, she is grateful for the most recent outpouring of aid.
The Bishop’s Falls Lions Club and Knights of Columbus are staging a walk-a-thon Dec. 20 to raise funds for the family.
“That’s why we’re involved, to try and remove the financial concerns and let them concentrate on getting Colby better,” said Oliver Rose, one of the organizers for the fundraiser.
Anyone wishing to donate can contact Rose, Wayne Mills or Ron Penney.
“If anyone wants to collect sponsors and walk, they can do that, too,” added Rose.
The proceeds from the second annual charity hockey tournament in Bishop’s Falls later this month will be donated to the family as well.
“All this is going to be a great help,” said Thompson. “It will help take away a lot of the financial stress.”
“It is overwhelming some times, and it can be a scary situation, but when you get support and prayers like this, it helps keep you going,” she added. “When there’s times like this, the community comes together and shows that it’s really caring.”
Adding that they’ve been able to lean on family support throughout the health battles and her co-workers have “bent over backwards,” to help.