August 2022 will mark two full years of waiting for the Thomson family. It will mark two years of hearing the phone ring and wondering if it is a medical professional calling to say that they have matched Bella to a bowel donor who will save her life. Two years of always trying to remain positive but always having the “what-ifs” at the back of their mind.
Bella was born in 2013 and Kyla and Lyle were overjoyed to welcome their first child. At only three days old Bella was air ambulanced to the Royal University Hospital in Saskatoon, SK as she was continuously vomiting and obviously suffering from painful distension. Bella was diagnosed with Hirschsprung’s disease, which is a disease that affects an infant’s intestines and makes it impossible for them to have bowel movements. She was rushed into an emergency surgery that the medical team hoped would improve her quality of life. Unfortunately, the procedure did not work, and Bella would remain in the hospital for the first two years of her life.
During these two years, Kyla and Lyle also learned that Bella was born with severe combined immunodeficiency (SCID) and a form of dwarfism called cartilage hair hypoplasia. On top of all of this, she needed to have a bone marrow transplant when she was just a year old due to her SCID diagnosis.
After two years in the hospital, Bella was finally able to go home. However, her medical treatment did not stop there. From her first admission at three days old to when she turned six, Bella went through 20 surgeries. Hirschsprung’s disease caused a portion of Bella’s intestines to stop functioning and she needed to undergo many surgeries because of this. These surgeries required Bella to have many broviaks placed, which is a line that is placed directly into a large vein leading into the heart.
In July of 2020, SickKids Hospital in Toronto took over Bella’s care and she travelled from Saskatchewan to Toronto. The medical team at SickKids determined that Bella needed a bowel transplant to survive, and she was listed for transplant on August 27th, 2020. All the broviaks she had placed lead to scarring on her veins and Bella’s doctors also told Kyla and Lyle that Bella’s current CVC site (where the lines are placed) needs to last until the bowel transplant happens. It is now a race against time while they wait for the call and hope that her CVC site remains intact.
There are hard days, but I am happy that recently there has been less of them. Making the wait a little easier
To date, Bella has spent over 850 days in the hospital and has had 23 surgeries due to her bowel disease and other rare conditions. She is fed via TPN, which is a method of feeding that bypasses the gastrointestinal tract. Kyla has been trained to run these IVs every second night. Bella is at risk of dehydration due to her bowels dumping fluids, so some nights Kyla also has to include IV replacement fluids. Bella also has two daily injections of medications that support her bowel function and CVC site function. They need to go to their local hospital weekly for check-ins with Bella’s local Pediatrician and Bella also requires vitamin supplements daily. Apart from that Bella has an ileostomy and Gtube button which need daily care too.
Despite all Bella’s care needs, Kyla shares that “the hardest part is having to cancel outings or not enjoy experiences together due to Bella’s medical needs. It hurts when we must be separated so much living an intense medical life for our daughter.”
Today Bella is happy to be feeling well enough to go to school and enjoy life with friends and family. Her days in hospital have lessened and she can spend more time doing what she loves as a kid because her medical teams have helped the family manage her bowels so well while they wait for the call. Kyla notes that “there are hard days, but I am happy that recently there has been less of them. Making the wait a little easier.”
