|Condition:||Medically complex care|
“Bella Brave” is a nickname well-suited for this seven-year-old from Swift Current. Bella was born in Saskatoon with no immune system, a rare bowel disease and a form of dwarfism.
Bella was in hospital from birth until age two. Within the first 10 months of life, she underwent four bowel surgeries, struggling to recover each time and even suffering from septic shock twice. Her medical team couldn’t understand why she was unable to heal. It turns out Bella had been living with an undiagnosed condition – severe combined immunodeficiency (SCID).
You wouldn’t expect it from the amount of time she’s spent in hospital. Because we don’t know when the call can come, I just want her to be the happiest she can be every day of her life. She understands happiness and dreaming and working hard.
“They were absolutely shocked that she had no immune system,” said Bella’s mom Kyla. “When they told me she has SCID, they said it is super rare and she has survived 11 months of her life and bowel surgery with no immune system. This was an absolute miracle. It’s so ironic to hear a medical professional use the word miracle, but they said there was no other explanation for why this child was alive.”
Drastic intervention was needed to help restore Bella’s immune function, so doctors listed her for a bone marrow transplant. At age one, Bella underwent the pivotal procedure with a 10/10 match. Her cells responded immediately away and the development of her new immune system began as if a new baby was born.
Although the bone marrow transplant was a success, the next three years were still puzzling as doctors couldn’t figure out her bowel issues. This led to many more surgeries, which Kyla described as exhausting for Bella and her team of doctors. Issues surfaced with her broviac line access, meaning her bowels couldn’t process food or water. It was the perfect storm for severe dehydration, and alarming enough to make the call for bowel failure. At this point, it was time for Bella to be listed for a transplant.
“It’s bittersweet because you don’t know when that call is going to come,” said Kyla. “It’s scary to wait and think ‘what if she loses access before we get the call?’ I try not to run that through my head and try to stay hopeful for the bowel transplant.”
Because Bella previously had a bone marrow transplant, she will be the second child in Canada ever to also receive a bowel transplant. At the time of her procedure, her team of doctors will be juggling three different immune systems – Bella’s, the bone marrow donor’s and the bowel donor’s. Although it’s complex, success of this procedure will give Bella a new life.
Currently Bella needs 17 hours of IV fluids per day. She is hooked up from bedtime until noon each day, and takes advantage of the remaining seven hours with online school, singing, reading and multiple dance parties. Now that she’s on the transplant list, Bella visits Toronto every six months for evaluation and visits her GI team in Calgary once a year, always remembering every nurse and doctor she meets.
“She is a fireball of energy, and I love that,” said Kyla. “You wouldn’t expect it from the amount of time she’s spent in hospital. Because we don’t know when the call can come, I just want her to be the happiest she can be every day of her life. She understands happiness and dreaming and working hard.”
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