“Organ donation is just so important,” says Jeremy’s mom, Michelle. “We can finally settle in to life as a family.”
BC Children’s is marking the 300th kidney transplant and the hospital is the only centre in the province that performs organ transplants for children. The first pediatric kidney transplant in B.C. took place at BC Children’s in 1983. It was the hospital’s first-ever organ transplant. BC Children’s Hospital cares for heart, liver, kidney and lung transplant recipients, and 15 to 18 heart and kidney transplants are performed at the hospital each year.
“The impact on families to support a child with advanced kidney disease can be profound,” says Dr. Tom Blydt-Hansen, director of the Multi-Organ Transplant program at BC Children’s. “A kidney transplant makes it possible for children to live well with their kidney disease.”
When Jeremy was eight months old, he woke up with a lump on his side. He was diagnosed with a rare form of kidney cancer, called Wilms tumour. Within a week, both the tumour and a kidney were removed. After five months of chemotherapy, he was diagnosed with Denys-Drash, a kidney disorder than can lead to kidney failure in children. His remaining kidney was shutting down so Jeremy had to be put on dialysis for 12 hours a day.
“Peritoneal dialysis is difficult,” says Michelle, who lives with her husband, Jason, and their three children in Cobble Hill, Vancouver Island. “It’s just a balancing act with the fluids. One day, he’s hasn’t had enough fluid and he’s cranky and upset. Another day, he’s had too much and is puffy. We had to limit how much he drank – which is tough for a two year old. Sleeping and keeping him in bed was really hard.”
There was a chance his remaining kidney could develop a tumour so it was also removed. Then, just two days after his third birthday, Jeremy received a kidney transplant from his father, who was an excellent match.
“The initial surgery by Dr. Kourosh Afshar was textbook, but Jeremy developed complications. Blood was going into the kidney, but not coming out. He had clots and had to be rushed back into surgery.”
He spent a week in the intensive care unit and had to be sedated the whole time. It took almost three weeks for his kidney to start working properly.
After healing for about a month, Jeremy was up and walking – or more like running – around.
“He’s always had a lot of energy,” laughs his mom. “He definitely has more now.”
Two years after the surgery, the family is travelling to Walt Disney World in Florida through Make-A-Wish BC & Yukon.
“It was his wish to stay at Disney’s Animal Kingdom. Just to be able to do that and get on a plane is really nice. He’s going to love it.”
“Children can live long, healthy lives after transplant and often the recovery is more challenging than the surgery,” says Blydt-Hansen. “Many kids have to learn how to eat again, think and go to school again, be physically active, cope with trauma from surgery and deal with procedural anxiety. Mental health can be a big component to transplant care.”
An interdisciplinary clinic was established at BC Children’s in February 2009 to provide comprehensive care to all children living with transplants, with highly-specialized transplant professionals. The team includes surgical and medical experts, nurses, social workers, pharmacists, physiotherapists, dietitians, psychologists, child life specialists and primary care providers. The model of care is successful and unique in Canada.
Dr. Doug Matsell, the head of the renal program at BC Children’s, helped create the interdisciplinary clinic with what he calls an “incredible advocacy force” of parents of transplant recipients.
“You had these children with organ transplants who had a heavy need for resources,” says Matsell.
Because kidney transplants may only last 10 to 15 years, Jeremy will likely need another kidney transplant in the future.
There are currently three children on the waitlist for a kidney transplant in B.C. and five children waiting for a heart or liver transplant. BC Transplant, the PHSA program that oversees all aspects of organ donation and transplant in British Columbia, encourages all British Columbians to register their decision and have a conversation with their family to make their wishes known.
“When we meet with families who are facing the situation where their loved one could be a donor, we can then bring the form to them to show them their loved one’s wishes. In such a difficult moment, it can ease their burden knowing what their loved one would have wanted,” says Ed Ferre, interim executive director at BC Transplant.
You can verify or register your decision at taketwominutes.ca, or register at any ICBC driver licensing office or Service BC office.