Policy complicating life-saving transplant for Cowichan child

A seven-month-old baby from Lake Cowichan is in desperate need of a liver transplant, but policies in Alberta, where the transplant will have to be performed, are preventing her from getting one from an anonymous living donor.

Naomi Carlow was born with biliary atresia, a rare and unpredictable liver disease, and has been at the Stollery Children’s Hospital in Edmonton awaiting a transplant since May 6. Several family members stepped forward as potential donors, but finding a perfect match has been a challenge. Her mother, Meredith, has too large of a liver to be an ideal donor. Her father, Curtis, has been tested to see it he is a match, but he is most likely too tall to be a donor. Although Naomi comes from a large family, it hasn’t been easy to find someone under the age of 30 with Type-O blood and a slender, petite build.

Naomi’s family mounted an online campaign to find an anonymous donor – something that worked recently for two babies in Ontario with the same condition – and although the response was impressive, policies prevent Alberta Health Services from even doing the initial screening of potential donors. AHS has said they are examining the policy, but even if they change it immediately, it probably won’t help Naomi.

One family friend has stepped up to be a donor, but even though she is a better match in size than Meredith, Naomi still has to grow a bit more before the transplant can occur. Because of her condition, it is nearly impossible to tell if she is growing, and it can only be determined by an MRI. She last checked in at 6.5 kg, and will need to hit 7 kg in order to get the transplant.

"We’ve got to wait for her to grow," Curtis said on the phone from Edmonton on Wednesday.

"It’s really hard to tell how much she weighs because she has a lot of ascites, which is fluid build up. It’s tricky with her, because the liver absorbs fats, and trying to get her to gain weight with a liver that doesn’t work is difficult."

In the meantime, her only option is to wait for a rare suitable liver from a deceased donor. "Right now, Naomi is at the top of the transplant list," her grandmother, Ramona Trombley said. "If a cadaveric liver from a child close to her size becomes available, she is first in line."

There is no registry for liver donors in Canada, although there are registries for kidneys and bone marrow here, and several other countries have liver registries.

Therefore, families with a loved one in need of a new liver must find their own donors. In Ontario, they are allowed to seek donors through social media, newspapers, radio and television, but that is not an option in Western Canada, where Stollery Children’s Hospital handles all pediatric liver transplants.

"This means that if a volunteer cannot be found among your family or friends, all your child can do is sit and wait for a cadaver," Trombley said. "While they wait, they get progressively sicker and sicker. The sicker they are when they go into their transplant, the lower the chance of a successful outcome."

Naomi’s parents have been by her side since she has been in Edmonton. Meredith is on maternity leave from Shar-Kare, while Curtis is away from his job at Surespan on critically ill child EI.

"We’re dealing with it," Curtis said. "We don’t have a choice with what to do. We’re frustrated. Naomi is stable right now, and we’re trying to keep her that way."

In spite of the bureaucratic issues, Naomi’s family has been pleased with the work done by the doctors and nurses during her hospital stay.

"Overall, the care she’s getting in Edmonton has been fabulous, except for the fact that they won’t do the testing on anonymous donors," Trombley said.

The ordeal has been a learning experience for the whole family, and they want to make sure other families don’t have to go through the same thing.

"I never knew Western Canadian children could only use a donor they already knew," Trombley said. "I never knew that every family of a dying child with end stage liver disease had to produce their own donor. Children in need of a liver transplant will die without it. Every family with a child this sick has enough stress without having to canvass their friends and relatives."

Trombley hopes Naomi can hold on long enough to get the transplant she so desperately needs from the family friend who was determined to be a suitable donor.

"We don’t know how much longer she can go," she said. "The sicker she gets, the harder the transplant is. A child in her condition who doesn’t get a transplant always dies, but a transplant is 85 per cent successful. Once they have it, they have their whole life ahead of them; a normal life."