This article was submitted by Kathryn McBurney, Children’s Hospital Foundation of Manitoba.
No parent wants to be apart from their child. It is especially difficult when that child is very sick.
“I would just cry when family and friends asked about her,” says Brenda Dumas.
Brenda was eight months pregnant when her oldest child Janessa was rushed by Medivac from the General Hospital in The Pas to HSC Winnipeg Children’s Hospital.
Janessa, 11 years old at the time, was curled in a fetal position screaming in pain as she left that day.
But Janessa’s health journey started much earlier. At age five she started having high fevers and recurring urinary tract infections (UTIs). Nearly every two months for a year Brenda would seek help at the local nursing station in Pukatawagan. Nurses did not know the cause, so they did their best to treat the symptoms and offer cleaning suggestions. But the UTIs got worse and Janessa was in more and more pain, so Brenda and her husband Gary Colomb packed up Janessa and drove the 210 km from their home in Pukatawagan to The Pas emergency room. There doctors provided medication for the five-year-old, ran tests and determined a referral to Children’s Hospital in Winnipeg was needed.
At Children’s Hospital, doctors told the family that young Janessa’s kidneys weren’t functioning properly. One was small and the other was diseased, causing urine to back up in the kidneys, thus causing the constant UTIs. A surgical procedure was done to insert a gel pack that would prevent further backup into the kidney. But the diseased kidney was the bigger concern.
“The UTIs stopped, but her health continued to decline,” says Brenda.
The family took the train or airplane every three months from Pukatawagan to Winnipeg for check-ups, leaving behind their two younger sons with family members each time. By age seven, Janessa was diagnosed with Stage 3 kidney disease but was stable for several more years, able to enjoy the activities she loved in her community like ice fishing and skidooing.
“She was an active kid – she loved being outside with friends. She would do an ice fishing derby every weekend,” laughs Brenda.
But that all changed. One weekend after spending time outside, Janessa developed a high fever. Brenda wondered if she was just sick from being in the cold weather but then the vomiting started … and would not stop. Brenda was pregnant and on bed rest, so Gary made the trip to Children’s Hospital with his daughter.
“Her dad and I stayed in contact the whole time. We were both so scared for our daughter.”
Janessa had reached Stage 4 kidney disease with 25 per cent kidney function that continued to decline.
Brenda made the decision to go visit her daughter for a couple days. “I was so relieved to get there to see her.” Brenda says the doctors and nurses took care of them both. “They said, ‘we’re going to get Janessa home with you before that baby is born,’” says Brenda fondly, “and they did.”
Janessa was home for the birth of her baby sister but within a few months she developed anemia and renal failure seizures began.
“That’s when we decided to move to Winnipeg to stay close to her and her care.”
The family packed up the kids and found a place to live near the hospital. Janessa was now in kidney failure and a transplant was the next step.
Covid-19 in early 2020 created a significant setback, slowing the process of the required tests that would allow her to join the transplant list.
In November 2020, now 12-year-old Janessa was finally added to the transplant list. “I was relieved as she no longer had energy and no appetite. I just wanted it to happen so she could start to feel better. They told us there was a risk the body might reject the new kidney, so that still scared us.”
In December 2020, Janessa had her kidney transplant and the surgery went well.
“The doctors and nurses were very good … helpful and caring to Janessa. They were awesome.”
Dr. Aviva Goldberg, Section Head for Pediatric Nephrology at HSC Children’s Hospital says Manitoba has the highest rate of kidney disease in children in all of Canada, so the hospital provides a full range of pediatric nephrology care for children from birth to young adulthood.
“We provide peritoneal dialysis, hemodialysis and intensive care dialysis as well as kidney transplantation to children from Manitoba, Northwestern Ontario and Nunavut,” said Dr. Goldberg. “We aim to provide care that is patient and family focused, respects our commitments to Truth and Reconciliation, and allows children to grow and thrive in their families and communities as much as is possible.”
Janessa continues now to visit the hospital once every three weeks for checkups on her kidney function.
“Janessa and the kidney are doing very well … she has named her kidney ‘Bob’,” laughs Brenda who is happy to see her daughter gaining more energy every day. The family hopes that soon doctors will give them the green light to move home. Janessa and her siblings are missing their family, friends and the outdoor activities they all love.
“I think within the year we will get back home,” says Brenda, “because the Children’s Hospital helped my child and gave her a chance to live a normal life again.”