Organ / Tissue Donation and Transplantation

When Deb and Will were expecting their second child, they carried with them all the excitement and hope that all expectant parents feel but after routine testing showed a problem with the baby’s kidneys, they knew they might be facing a challenging road ahead.

Ultrasounds revealed that the baby had what appeared to be one normal kidney and one that was cystic. They met with a range of specialists including neonatalogists, nephrologists, urologists and interventional radiologists and Deb underwent biweekly ultrasounds to ensure the baby continued to develop normally.

Immediately after giving birth to baby Kate they waited to see if she would urinate on her own; she didn’t. The one kidney that had been believed to be normal was in fact made up entirely of cysts and the other kidney was made up of larger cysts plus some viable kidney tissue. This condition, called multicystic dysplastic kidneys is a result of a congenital malformation.

There was also another issue; her one partially functioning kidney was not connected to her bladder. Kate had to undergo an operation to move the kidney closer to her skin and a hole was made so she could urinate.

For two years the family waited for Kate to get big enough to undergo a kidney transplant.  Will had already been confirmed to be a match for her and as her second birthday approached they also managed to luck out in that Kate had managed to go without dialysis up to this point.

When the time came that Kate became eligible for the transplant, the family received more bad news.

“We were disappointed to learn that Will couldn’t donate his kidney to her,” says Deb. “Ultrasounds showed that his kidney was not anatomically suitable. He has two arteries in his kidney, both of which are huge and far apart, which meant they couldn’t be connected to her.”

It was a huge let-down for the family as Deb also wasn’t a viable candidate because she had an incompatible blood type. That same day, however, they registered with Canadian Blood Services’ Living Donor Paired Exchange (LDPE) program at SickKids in Toronto.

The LDPE—which operates as a partnership between Canadian Blood Services and transplant programs across the country—facilitates living kidney donations between patients with a willing but incompatible donor and other pairs in the same situation.

Within a few weeks the family was told they had a potential match. The only information that could be shared with them at that time was that someone somewhere in Canada had a kidney that matched Kate; a patient somewhere else was a match for Will’s kidney and a three-way exchange was being considered.

Eventually it all came together and Will travelled to Quebec to donate his kidney.

“All I knew was someone needed my kidney and that someone from the Maritimes would fly to Toronto to give a kidney to Kate,” says Will.

“I went under and then I woke up and I was down a kidney and Kate was up a kidney and it was amazing! I was on my BlackBerry with my wife who told me that Kate was doing extremely well and that’s all I needed to hear.”

Almost immediately, the family saw a huge difference in Kate. She was urinating properly and within a couple of days of her transplant she was eating after a year in which she had had no appetite.

Within one month her hair started to grow and her teeth started coming in. Today, three-year-old Kate is a lively and active toddler who recently started preschool.

“If it weren’t for this registry, we never would have found a match for Kate,” says Will.

“We can’t imagine what would have happened if there had been no LDPE program. She is doing so well and we are just so grateful to everyone who helped us.”