'All we can do is wait and hope': Young boy waiting for liver transplant faces challenges amid pandemic
Dana Hlatky said her son Micheal was born with a disease called biliary atresia, which affects the liver. (Submitted: Dana Hlatky)
WINNIPEG -- It's been a long wait for a Manitoba mother and her seven-year-old son who needs a liver transplant.
Now, with school starting in less than two weeks, she says the COVID-19 pandemic is bringing new challenges.
Dana Hlatky said her son Micheal was born with a disease called biliary atresia, which affects the liver.
"Your liver does all kinds of things for you: it helps you absorb nutrients, it produces some vitamins for your body to function, and his doesn't do that so well," she said, adding the disease has affected Micheal's lungs and he now requires oxygen 24/7.
"His liver is basically suffocating his whole body."
Hlatky said Micheal's need for oxygen is going to increase until he gets a new liver. She said they have been on the waiting list for nearly a year now.
"We have no idea how long it will be. Micheal is in need and they don't know when a donor will come through for him – whether it be a deceased or a live donor. All we can do is wait and hope," she said.
Dr. Faisal Siddiqui, a physician with Transplant Manitoba – Gift of Life, said in Manitoba there are currently about 200 people waiting for kidney transplants and another 12 people who are waiting for other donations including heart, lung and liver.
"There is a very small portion of patients near the end of their life that could be an organ donor – less than about three per cent of all hospital deaths could be considered possibly an organ donor," he said.
Hlatky said Micheal's blood type is AB, which means he can receive from a donor with A, B, or O positive or negative blood types. She said more information about the liver donor program can be found online through the Toronto General Hospital.
TRYING TO KEEP MICHEAL SAFE DURING A PANDEMIC
Hlatky said at this point Micheal does not require dialysis, but they don't know how long that will last. As they wait, Hlatky said COVID-19 has brought new challenges, not just for Micheal, but for the whole family, including his dad and younger brother.
It's been a different summer for Micheal and his younger brother. Hlatky said they have had to be cautious, cancelling play dates and trips to the zoo.
"There is all kinds of things in the past year that Micheal does not get to do, with COVID especially," she said. "There is a lot of people we don't get to go see, because we have to keep him as healthy as we can, waiting and hoping for that phone call saying that they have a liver."
She said with the return to school around the corner, there is another problem weighing on the family's mind.
"His brother doesn't get to go to kindergarten this year because if he brings something home to Micheal – it could kill him," she said.
Hlatky said come September both her boys will be a part of the remote learning program, though she still has questions on what this will mean.
"Like most parents, we don't really know what that looks like yet, education personnel are still planning that and still working through it as they get more information."
She said when they do go out, she has noticed many people not wearing masks, and it's concerning to her.
"Putting on a mask does not cause physical harm to someone. Catching this disease can cause physical harm and death," she said. "Why compromise them a little bit more when they are already fighting so hard just to survive."
HOW COVID-19 IS AFFECTING ORGAN DONATIONS
Siddiqui said the COVID-19 pandemic has affected health care across Canada, and the transplant programs across the country have also had to change their protocols based on the level of COVID-19 in the communities.
He said if a potential donor tests positive for COVID-19 when the transplant is required, they will not be considered for the donation.
"Just because you may have tested positive once, you are not excluded outright," he said. "But everyone who could be a donor gets tested prior to donation, and we don't want you to be positive at the time of donation."
Siddiqui said in the province there has been a slow and steady increase in the number of organ donations over the past decade, and the COVID-19 pandemic has not significantly changed that.
He said if people are considering becoming an organ donor, they should go to SignUpForLife.ca to find more information and, if they choose, register to become a donor.
He said people should also talk to their friends and family about their decision.
EDITOR'S NOTE: This story has been edited to include Micheal's blood type, and more information about the Toronto General Hospital living liver program.