‘High hopes’ of liver donor for ill 18-month-old Airdrie boy

An Airdrie couple is spreading the word about live liver donation, as they await a donor to save their toddler's life and help other kids on the waitlist.

An Airdrie couple is spreading the word about live liver donations as they await a donor to save their toddler’s life.

“Having a donor transplant for Colby would be life-changing,” said the toddler’s mother, Stephanie Crofts.

Colby Crofts is an 18-month-old with a rare genetic condition called Alagille syndrome that impacts his organs, primarily his liver.

He has been in hospital several times due to liver failure.

His latest stay started in June.

“We spent the last almost nine weeks in hospital. It’s been pretty tumultuous, I would say,” his mom said.

“It’s been hard watching him get so sick.”

It is a difficult time for the toddler, his mom who stays with him at Alberta Children’s Hospital (ACH) and his dad and three sisters who have been staying nearby at Ronald McDonald House.

“It’s been a struggle for the family. We have high hopes and are believing things are going to change,” said his father, Mike Crofts.

Right now, Colby is not able to walk or stand, has to take several medications and is always hooked up to a machine.

His doctor says Colby needs a liver donation.

“It would be the difference between life and death for him,” said Dr. Simon Lam, who works in the Pediatric Gastroenterology Clinic at ACH.

“The priority is to get an organ to make sure we can get Colby back on track.”

Lam says it is “night and day” when children who need liver transplants get them, allowing the children to finally be able to grow, develop and live like kids.

Colby was officially listed for a liver transplant on July 3, and his family is hoping the right donor comes along soon.

It could come from someone deceased or a live donor who has surgery to remove a piece of their liver.

His family says the living option does come with advantages.

“We could have a known time; we could book it during daytime (and) we could make sure the surgeons are all prepared and it’s not an emergency,” Colby’s mom said.

She says she never knew living donors could give a piece of their liver.

“The liver is like a worm; you can cut a piece off and it can just regrow, but unfortunately for Colby, because of his genetic condition, his liver can’t regenerate and repair itself,” his mom said..

“It is a major surgery, so there are risks with it, but overall the donors do very, very well,” said Dr. Lam.

Recovery for living donors often includes up to a week in hospital followed by about six to 10 weeks at home.

Colby needs a donor with type O blood (+ or -) who is healthy and between the ages of 18 and 55.

Colby’s mom says she learned there are eleven children waiting for livers in the areas served by Alberta’s Living Donor Services (including Alberta and parts of Saskatchewan, B.C. and Northern Canada).

That’s why Colby’s family and doctor are raising awareness about organ donation.

“The impact people can make with a selfless act,” said Dr. Lam.

“That huge impact that organ donation can have for the community and specifically patients like Colby.”

Kidneys can also be donated through living donor programs.

Anyone considering registering as a donor can contact Living Donor Services at 780-407-8698.