WCR This Week

WCR PHOTO | THANDIWE KONGUAVI Baby Naomi had a successful liver transplant on July 6.

When baby Naomi Carlow was born last October, her grandmother Ramona Trombley immediately knew something was wrong.

The baby was jaundiced, and any hope that it was just a normal baby jaundice was dashed upon Bilirubin testing the next day, which indicated a problem with Naomi's liver.

Naomi was hospitalized five times and had two surgeries before she was diagnosed with biliary atresia, a rare and unpredictable liver disease, and flown to the Stollery Children's Hospital in Edmonton from her home in Lake Cowichan, B.C.

In the months awaiting a life-saving liver transplant in Edmonton, frustration grew among the hundreds of well-wishers following Naomi – many of whom were willing to donate a portion of their liver to save the little baby – around the living donor policy in Western Canada.

That policy restricts living liver donors to close relatives or family friends. Despite Naomi's large family, none proved to be a suitable liver donor for the baby.

The frustration was especially felt by grandfather Greg Trombley, a member of the Knights of Columbus. Trombley felt helpless.

"Just frustrated that we have a role to protect our children, but in this particular case we couldn't," said Greg Trombley.

"So my feelings were more for my granddaughter but for my daughter as well because I wanted to protect her from the pain and frustration that she was feeling, mainly frustration."

The overwhelming response from the complete strangers who came forward willing to lose a part of their liver to save Naomi brought tears to his eyes.

"That alone renewed my faith in humanity. It was quite inspiring," said Greg Trombley.

It also inspired Ramona Trombley to make it her mission to change the policy in Western Canada.

The Stollery Children's Hospital and the University of Alberta Hospital are the only sites in Western Canada that can provide the level of care Naomi requires.

FIRST TIME

According to an Alberta Health Services spokesperson, its pediatric living liver transplant program has never required an anonymous living liver donation – in every case, a family member or close family friend has been able to help their loved one, in terms of providing a living liver donation.

Since the first living liver transplant was performed in Edmonton in 1998, there has never been an instance where a family member or someone with a close relationship with the recipient has not been able to act as a donor.

AHS is reviewing its living liver donation protocols and procedures but cites strong medical and ethical reasons for not allowing anonymous living liver donations.

HIGHER RISK

There is higher risk involved in living liver donations, and it also needs to ensure that a donation is being done for the right reasons.

Ontario is the only province in Canada that allows anonymous living liver donations.

According to a University Health Network spokesperson, the province has never restricted living donors to family and close friends.

In 2005, Kevin Gosling, 46, became Canada's first anonymous liver donor when he had the left lobe of his liver removed and donated anonymously to save the life of a child in Ontario.

The network also performed the first Internet donor transplant in 2004, in which a woman donated one of her kidneys to a person she found while browsing online, on a website that matched donors with recipients free-of-charge.

Canadian Blood Services administers the Living Donor Paired Exchange registry where two separate but willing donors who are unable to donate to their intended recipients due to blood group incompatibility are matched so each recipient can receive a kidney with a compatible blood type.

Kimberly Young, director of donation and transplantation for Canadian Blood Services, said the agency has not explored the possibility of a similar program for living liver donors.

A much larger number of people need kidney transplants so the need for a liver exchange registry is not as great, she said.

In baby Naomi's case, a family friend was eventually identified, and although her liver was not an ideal match at first, Naomi was able to grow to a size where the transplantation could take place.

The operation was completed successfully on Monday, July 6. But the family says it will continue to advocate for a national registry for living liver donors, similar to the national blood registry.

The family believes the registry would reduce the wait time for cadavers, and reduce the need for cadavers since living donors could be used for those who can use them.