Since the publication of the original story on Emma Crawley by 650 CKOM in April, there have been developments that continue to necessitate the search for a donor. Emma's mom Megan and her family have roots in Humboldt, Lake Lenore and the area.
“The past few weeks have been pretty busy,” Megan explains, “Emma has had a fluid buildup in her belly as a side effect of her liver disorder. She was on medication for that, but it just wasn’t working, so she had to undergo a procedure to put a drain in.”
The hope was the procedure would make it easier for Emma to breathe and help reduce her heart rate. The procedure did not yield results, so Emma was moved to the Pediatric ICU for an echocardiogram which revealed further issues.
“It was discovered she had a thickening in the left ventricle, called hypertrophic cardiomyopathy, so that was obviously devastating for us to learn.”
The presence of the condition stumped doctors given its rapid development. Cardiology and the genetics team became involved, given a family history of the heart disorder. The heart condition increased the risk in any transplant procedure, but in a Catch-22, the medical team concluded that the heart condition was a secondary result of the failing liver. The mystery continued to unfold when a subsequent echo scan showed the heart had quickly responded to medication and had stabilized.
Surgeons are hoping to proceed with a liver transplant, and not a multi-visceral procedure anymore,” Megan added. “The liver transplant surgery is very risky because the main vein to her liver is too small with a block in it. They have to do what’s called a SMV jump graft, and it’s pretty risk. There’s a 30 percent chance she would not survive the procedure.”
While Emma’s condition has stabilized, her situation remains precarious, and with the need for a rapid intervention, Emma’s surgeons have once again opened the scope to a living donor for the transplant.
“We have several people who are being worked up already, which is amazing. Initially there were 95 phone calls; there have been 25 more in the past couple of days. There’s more urgency to finding one this time because if she gets too sick, she can’t have a transplant at all.”
At the moment, Megan says that her daughter presents as a happy little girl, chattering and blowing bubbles following the heart scare. The family remains at the Stollery Children’s Hospital in Edmonton with Emma under the watchful eye of her care team.
Megan Crawley’s cousin Andrew Puetz became an organ donor in 2020, saving many lives through his final act of generosity. (Submitted)Again, Megan Crawley and her family remind people of the importance of having a conversation with family about organ donation. She looks to her cousin, Andrew Puetz of the Humboldt area, as a shining example of the selfless act of taking the step to donate his organs.
“As you know, Andrew made it clear to his family that he wanted to donate his organs. When Andrew tragically was in that position, his family knew that this is what he wanted to do. It gave the opportunity to save the lives of up to eight people. Organ donations save lives.”
Megan says a lot of people aren’t aware of the living donor program, and the need is great with a lot of kids on the wait list for living donor donations. For Emma’s sake and for kids like her, it’s important to help spread the word.
Again, to sign up as part of the Saskatchewan Organ and Tissue Donor registry, click here.
Mon, May 20, 5:30 PM
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