Family with Humboldt roots seeks organ donor for baby daughter

The following article was originally published by 650 CKOM on April 11, 2024. Stay tuned for the follow-up article on DiscoverHumboldt.com. 

It should have been the best phone call of Megan Crawley’s life.

After weeks of searching for a living liver donor for her daughter, she learned her aunt was a perfect match.

The news should have been cause for celebration, but it felt like a punch to the gut. Hours earlier, Crawley discovered that due to complications, her baby was no longer eligible for a living donor transplant.

Seven-month-old Emma will instead need organs from a deceased child donor.

“That means that another family is going to be losing their child. Someone else needs to pass away in order for her to receive these organs, so wrapping our heads around that is tough,” Crawley said.

Emma was born on Aug. 21, 2023 and seemed perfectly healthy. But when she was four weeks old, her parents began noticing changes in her appearance. Her eyes became cloudy and her complexion yellowed.

“The one day she was in the bathtub, and we were like ‘Woah, it looks like she has a sun tan. That’s weird,'” recalled Crawley.

They mentioned the changes to their family doctor, and Emma was sent for blood tests.

“Twenty-four hours later our doctor calls us and says that her liver enzymes and direct bilirubin were quite high, so we needed to be admitted to the hospital,” she said.

The family went to Jim Pattison Children’s Hospital where they began to understand how serious Emma’s condition was.

“Indirect bilirubin is what often times a lot of babies are born with when they have jaundice, and that can go away (with) phototherapy,” explained Crawley, noting Emma’s direct bilirubin was the cause for concern. “The doctor told me ‘Phototherapy treatment will not work for her. There is likely something wrong with her liver.'”

Emma was diagnosed with biliary atresia, a rare condition that doesn’t allow bile to drain from the liver.

“By six weeks of age she already had pretty significant liver damage. At this point they did a procedure called the Kasai procedure. They took a piece of her intestine and they brought it up to her liver so that there was a little channel for the bile to go into,” said Crawley. “This procedure, it is not a cure. It is basically to give the patient time before they will eventually need a liver transplant.”

At first, doctors believed Emma would need a new liver in two to five years, but her condition quickly worsened.

“We did some blood work and her liver enzymes and direct bilirubin were higher than they ever had been,” said Crawley.

The family was referred to Stollery Children’s Hospital in Edmonton in December 2023.

“They wanted to get her booked in pretty soon for a transplant assessment. We were devastated by this… because we had hoped she could at least make it to age two,” said Crawley.

Kian Crawley holds his daughter Emma at the Stollery Children’s Hospital. The family will remain in Edmonton until Emma’s transplant happens. (Megan Crawley/Submitted)

In February the family was told Emma would be a candidate to receive a donation from a living donor.

“We put out a post on Facebook and we had over 95 people call in inquiring about being a living donor for Emma, which we were obviously thrilled about,” said Crawley.

However, due to complication’s with Emma’s small portal vein, which doctors describe as the size of a sliver, she will likely require a multivisceral transplant. This type of transplant includes not only the liver, but also the stomach, pancreas, and small intestine. The procedure requires another family to donate the organs of their child after death.

Crawley knows the pain — and the pride — that comes with donating the organs of a loved one. Four years ago her cousin, Andrew Puetz, was declared brain dead after slipping and hitting his head. On what would have been his 23rd birthday his organs and tissues were surgically recovered for donation.

Puetz had spoken with his family about his wishes to become an organ donor, and Crawley said she’s grateful her family had those discussions before his untimely death.

“They knew without a doubt this is what he wanted to do. It is very important for people to not only go online and sign up to be an organ donor, but to have conversations with their family members,” she said. “Even if you’re young. Even if you’re healthy.”

The news that Emma is no longer eligible to receive a living donor donation was a blow for the family, but there is still hope for the seven-month-old child.

“Emma is on the pediatric transplant list for all of Canada. She is at the top of the list now,” Crawley said.

Crawley said she remains hopeful that a donation will come, and that Emma’s quality of life will improve once the transplant happens.

“I just want her to be able to live a life that is pain free. I want her to be able to experience things that normal kids get to experience. I want her to just be able to have a normal relationship with her brother and see the two of them grow up together and be best buddies. That is my hope. I hope that we can see her live a full, healthy life,” she said.

Crawley said Emma’s cheerful nature helps the family stay positive as they wait for the call that a life-saving organ donation is on the way.

“She’s so resilient. It actually kind of blows my mind. Everything she’s been through… She truly is so happy, very easy going, and we just go ‘Wow, we need to be a little bit more like her through all of this.'”