Moncton mother appeals for organ donation rule changes

A Moncton mother is appealing to the Nova Scotia Health Authority to be reconsidered as a kidney donor for her young son.

Ashley Barnaby's son Zaccari Buell has congenital nephrotic syndrome and minor heart issues and has spent much of his life at the IWK Health Centre in Halifax. 

Barnaby says she was told she was a match only to learn she was rejected as an organ donor because she previously developed gestational diabetes and high blood pressure when she was pregnant. 

"Now that I'm completely healthy and capable of making this donation to my son, I'm being denied because of the chance of something happening in the future with my health," she said. 

"If those red flags were such an issue I should've been given that information back in October instead of building my hopes up, making me go through months of testing." 

Potential donors have approached the family, Barnaby says, but now they have to start from scratch with the screening process. Just a few weeks ago, she says she'd talked to doctors about the possibility of a transplant as early as February. 

Petitioning for change

Barnaby has written a letter to the health authority and says she's been told her case will go before a panel of nephrologists, or kidney specialists, in the coming weeks. 

This weekend she started an online petition that she hopes to present to the panel. So far there are about 300 signatures on it. 

No one from the Nova Scotia Health Authority was available to comment Sunday.

In a statement, the medical director of the Living Kidney Donation program says specialists follow national guidelines when evaluating possible donors and consider applicant's health and safety in the short and long term.

"Unfortunately, there are times when health factors result in the donation being ruled out," Dr. Christine Dipchand said in a statement. "As health care providers we share in that disappointment." 

Barnaby is still hopeful her son will receive a transplant, which she says is necessary for her son's quality of life.

Around the clock care

The toddler is hooked up to a dialysis machine for 12 hours a night, needs medication throughout the day and receives nutrients through a feeding tube. Although he's 18 months old, his condition has affected his development. 

"The only thing that is keeping him going is being hooked up to his [peritoneal] dialysis machine every night. That's no way a child should have to live. That's not life living on a machine," Barnaby says. 

She hopes her plight will help raise awareness about the importance of organ donation.

In the fall, Barnaby created another online petition to lobby the federal government to consider switching to a system where it is presumed people will donate unless they opt out. 

Now she says the organ donation process must also adapt to allow people like herself to make calculated risks. 

"If at the end these are the issues, I should have a voice. I should be able to give consent, waive those health issues, take full responsibility for my own health and be able to give my son this life-changing kidney treatment."