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saving lives through canada's living organ donation program: a mother’s love and a second chance

once betsy budziak and her family heard there was a way to save her daughter's life without the death of another child, they jumped at the opportunity.

by angelica bottaro

sep 9 2024

10 minute read

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betsy budziak’s daughter delfina was born with biliary atresia, a blockage in the ducts that carry bile from the liver to the gallbladder. however, she and her husband peter were unaware of delfina’s condition, as were the doctors who helped deliver her. when delfina was first introduced to the world, she had jaundice, a yellowing of the skin and eyes that occurs in roughly 60 per cent of newborns.

after a brief round of uv light treatment, she was cleared to go home. betsy and her peter took delfina home to care for their new bundle of joy, and it wasn’t until two months later, at a routine checkup, that the signs of her bile disorder began to truly show.

at that check-up, a medical student observing and learning the ropes noticed that the child’s skin had a yellowish tinge. after some medical diagnostics, doctors realized that delfina didn’t develop typical newborn jaundice—she had a significant health issue that would eventually lead to requiring an organ transplant.

“we didn’t see it at the time (but) looking back in the photos, we absolutely see it,” said betsy, describing how all they saw was their perfect baby girl and not the yellow skin that had quickly become impossible to ignore.

less than 24 hours after that appointment, betsy and peter received the call that no parent ever wants to receive.

“i remember it was a simple, ‘delfina’s liver is very sick. you need to drive her to sickkids again.”

the need for organs for canadians living with chronic disease

delfina wasn’t alone in her need for a life-saving organ transplant. she is among thousands of others who sit on waiting lists while their bodies fail them, begrudgingly hoping for an organ to become available, all the while putting it in the back of their minds what has to happen for that to become a reality.

“does that mean i kind of have to hope for a baby to pass away because, you know, they explained to us an adult liver would be too big,” said betsy, when recalling the bittersweet hope she felt while on the organ donor waitlist. “that’s a little morbid to almost have to wait and hope for another baby to pass for delfina to get a viable liver, and that’s when sickkids asked us if we were interested in the living donor program.”

once betsy and her family heard there was a way to save delfina without the death of another child, they jumped at the opportunity—an opportunity that could be far more valuable if more people were aware of the living donor program and what it means to families like betsy’s and others waiting for life-saving organs.

dr. nazia selzner, the medical director of the living donor program and the ajmera transplant center at university health network (uhn) and director of the center for living organ donation sees families like betsy’s all the time grappling with the emotional turmoil involved in watching someone they love deteriorate before their very eyes.

because of this, she has dedicated her life’s work to spreading awareness about living organ donation and the impact it can have on those who could benefit from it.

“if you talk about liver per se, there is, every year, somewhere around 200 to 250 patient recipients who are waiting for a liver transplant and somewhere around 800 patients who are waiting for a kidney transplantation,” she said.

the issue with these waiting lists is that many donors who have registered in the country do so with the idea that their organs will be given freely to those who need them only after they are gone. until then, those who have to wait will continue to do so, with some passing while on the list.

the need for an organ transplant in the country and where people are placed on the list is defined by the model for end-stage liver disease (meld) score. the higher the score, the more dire the need for an organ, and the higher up on the list you go.

“those are generally the patients that suffer the most (those with higher scores),” said dr. selzner. “because their waiting time can be very long, and they may actually get sicker or even die while waiting for an organ.”

betsy and her family understand this all too well. before delfina was given the go-ahead to get a liver transplant, she had spent time in and out of the hospital, doing different treatments in the hopes that her condition could be improved without having to go to such great lengths.

all of delfina’s treatments helped only mildly, though, and on the day of her baptism, a fever spiked so high that she “felt like a human heater.” she was readmitted to sickkids—not for more treatment, but to wait for a liver transplant.

the living donor program in canada

the uhn’s centre for living organ donation is committed to providing additional options for people living with life-threatening diseases that require an organ transplant. it was established in 2018 by the ajmera transplant centre to help connect people with life-saving organs so that they do not have to wait until another person loses their life to save theirs. they also partner with sick kids and act as the country’s largest pediatric living donor transplant organ.

the programs rely on people generous enough to add their names to the list of viable candidates who will jump in and offer their organs to those they love or strangers who require an organ and are a match.

betsy and her family all joined the program when delfina was in dire need of her kidney. each went through the testing motions, hoping that one would be a match.

“my husband was the first to raise his hand because, at the time, i had a two-year-old, and i was obviously on mat leave with delfina,” betsy said of her second child, a son, and her family’s decision to leave her off the list because they needed her to care for him and their daughter during the trying time.

“he was immediately dismissed because he wasn’t the right blood type. next in line was my brother, who at the time had no children; he wasn’t married yet. he was the right blood type. we all were almost kind of fighting like, ‘let it be me.’ we wanted it to be ourselves, so my brother was excited that he was ruled as the right blood type.”

after more tests, it was established that he wasn’t a viable donor, and they were “back to the drawing board.” during the first leg of testing, four family members tried to opt in to save delfina’s life, but because of the strict requirements of organ donation, they did not meet the specific criteria. other family members tried as well, and they were also dismissed.

getting approved for organ donation is no easy feat. first, a person must be a blood type match. then, other criteria have to be met to ensure that the organ in question is healthy enough to sustain another human life and will not cause more problems down the line.

“in order to be a living donor, one has to be very healthy,” said dr selzner. “they have to be between the age of 16 to 60 years of age, and they should not have any chronic disease or any history of cancer, diabetes, heart issues, et cetera. if they meet those criteria, they would come forward.”

they would also have to submit a health history to the program and undergo testing to determine whether they match a particular recipient. at the same time, while people wait for these organs, they have to contend with the fact that time is not on their side.

betsy and her family had to be careful about how many people to put on the list for delfina because they could only test one person at a time for any particular recipient due to resource restraints. when working against the clock, they had to be smart about who they put at the front of the line.

eventually, it was betsy’s turn to get tested. unfortunately, through her first round, nodules were found on her liver, and she was denied the chance to save her child’s life.

the power of community for living organ donation

when betsy was dismissed from the list, she and her family grew desperate. they turned to social media and made a call-to-action post that would, hopefully, find the right person for their daughter.

“we didn’t want to wait for delfina to be listed so high because we know that meant she would just continue to deteriorate,” she said. “they explained to us that the ideal situation going into transplant surgery is, you want to be as healthy as possible going in for a quicker recovery coming out.”

one evening before bed, they put the word out to their online community, and by the morning, the post went viral. the overwhelming show of support from the community re-instilled a sense of hope in betsy and her family, and she was connected with someone who helped them spread their plea even further through newspapers and television shows.

even canadian soldiers overseas managed to learn about delfina’s story, with some throwing their hats into the ring for donation. it looked as if they had plenty to choose from, but that became a problem in and of itself because the list operates on a one-at-a-time basis.

luckily, the doctors offered another route for betsy: an ablation procedure to remove the nodules from her liver in the hopes that it would make her a viable candidate after all. the procedure took, and once all was said and done, betsy was officially approved.

it still wasn’t 100 per cent, as the day of surgery could still show issues with the liver that halt the entire process, but luckily when the doctors got a good look at betsy’s liver, it was more than good enough to be put into her daughter, saving her life.

“there’s pictures of me on surgery day and i’m just beaming ear to ear because, again, maternal instinct, i know this is what she needs. i knew from the day they said she had biliary atresia and she needs a transplant,” betsy said of her mother’s intuition. “i was dying for the day that transplant would happen, so i was like christmas morning.”

when she awoke from the surgery, she was ordered to rest, and a whole day passed before betsy was able to see delfina.

recovering from an organ transplant and the power of living donors

betsy recalls seeing her daughter for the first time after their surgeries, covered in after-surgery wires, cables, and stitching, but not feeling sad or worried. she knew in her heart that her daughter was going to be okay.

they were told that they’d likely be in the hospital for up to two months recovering, but because of delfina’s “resiliency and strength,” they were home for good after less than just three weeks.

since then, delfina has lived the life of a healthy little girl. she’s at the top of her class in academics, she plays rep-level basketball and soccer, and she has a lot of friends, one of her best friends being her little brother.

“they have a relationship like none i’ve ever seen amongst brothers and sisters. i’ve seen feuding and fighting, and you don’t see that with him and her,” said betsy. “i think part of her journey almost made him appreciate her and their relationship.”

betsy also speaks about her husband peter as being the rock of the family through it all, helping her keep a hopeful attitude.

“grateful. i guess that’s the best word i can say for how we feel as a family. grateful, appreciative, hopeful. you know, if i could rent a plane and put it in skywriting for organ donation saves lives, we’re living proof that it does.”

betsy hopes that living organ donation will become the norm in the future, and dr. nazia selzner and those with the uhn living organ donation program continue to work tirelessly to ensure that people understand the need and are willing to step up and be a part of the life-saving community that helps children and people like delfina live full, happy, and healthy lives.

“the numbers are rising,” said dr. selzner of those coming forward to participate in the program.

the program she leads is dedicated to ensuring that more people are given the right tools and information to make the decision to become living organ donors. many previous donors play new roles as advocates once they have participated.

the uhn event, great actions leave a mark , is just one of their many efforts dedicated to spreading that awareness. it’s an art gallery experience allowing people to engage in the beauty of scars from those who have them from the not-so-simple act of saving a life.

living donation week is september 8-14. if you want to learn more about becoming a living donor, you can find information on uhn’s living organ donor program page.

angelica bottaro

angelica bottaro is the lead editor at healthing.ca, and has been content writing for over a decade, specializing in all things health. her goal as a health journalist is to bring awareness and information to people that they can use as an additional tool toward their own optimal health.

saving lives through canada's living organ donation program: a mother’s love and a second chance

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saving lives through canada's living organ donation program: a mother’s love and a second chance

once betsy budziak and her family heard there was a way to save her daughter's life without the death of another child, they jumped at the opportunity.

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