Organ donation and infants: One family’s brave story about love, loss and helping others
WATCH ABOVE: A toddler dies and saves three others. Kevin and Cheryl Boston donated their son’s organs in 2013. Crystal Goomansingh reports.
His liver was a match for a little boy waiting for a donor, his kidney took an adult off of dialysis and his heart is now beating inside of a little girl whose life he saved.
Keanan Allin Boston was only 21 months old when he passed away, but his brave legacy is living on. For his parents, Kevin and Cheryl, deciding to donate Keanan’s organs became the catalyst for finding meaning in their catastrophic loss, a silver lining of consolation as they grieve.
“It was probably the most difficult decision of our lives, yet the easiest,” Kevin explained.
“It does help through the grieving process. Almost every day you cry because you miss him, but you know he’s got a little girlfriend out there with his heart. That’s his girlfriend forever now,” Kevin said.
For Organ and Tissue Donation Awareness Week, the Bostons bravely shared their story with Global News.
Keanan was born on April 1, 2011 – the Bostons’ little joker. He was gorgeous – big blue eyes, a head full of blonde, curly hair, and a grin that went from ear to ear.
He could count to 10, recite the alphabet. When Kevin would head off to work in the morning, Keanan would spew out, “Daddy – car – vroom.” When the doting father returned home, Keanan held out two miniature hockey sticks: “Daddy – hockey – two” signalling Kevin to come play mini-stick.
The toddler had a voracious appetite: he loved turkey, bananas and he could polish off a bowl of peas, his favourite.
You could find the little boy running across his parents’ backyard, chasing their family dog, Suzie, in the living room and smiling coyly at fellow shoppers in the supermarket.
His grandma nicknamed him “Special K” because, well, he was special. He had an innate way of drawing people in.
On January 22, 2013, the trio’s world turned upside down when Keanan passed away at the Hospital for Sick Children (Global News has agreed to omit Keanan’s cause of death for privacy reasons).
While at the hospital, a Trillium Gift of Life Network (TGLN) representative approached the parents in their darkest hour.
“You’re in such a daze, you’re absolutely numb at this point. When you get asked [about organ donation] you’re sort of taken aback a little because this is reality here,” Kevin explained.
READ MORE: How one woman’s organs saved six lives
Organ and tissue donation is a touchy subject, but when you’re dealing with infants and children there is another layer of complexity, according to Dr. Atul Humar, director of Toronto General Hospital’s multi-organ transplant program.
“It’s a very delicate situation. It’s the loss of a child, the most devastating thing that can happen to somebody,” Humar told Global News.
But doctors have witnessed selfless acts even as families go through their personal tragedy.
“It’s amazing, this generosity and ability to see a bigger picture to help others in their own time of grief and stress. It’s entirely humbling,” Dr. Sonny Dhanani says. He’s the chief medical officer at the TGLN.
Deceased organ donation is an incredibly rare event: the person has to die in an intensive care unit where the option for organ donation in end-of-life care is on the table. The patient has no hope for recovery at that point, or doctors declare the patient dead under specific criteria. That only happens in about three per cent of pediatric ICU cases, Dhanani says.
Then, the donor and recipient have to be compatible in blood type, size of organ and age, for example. Children’s organs are typically earmarked for youth, too, but if there isn’t a compatible match, a child’s organ can be used in a fully grown adult.
Two child-sized kidneys can be put together for an adult. A child’s liver can be used in an adult because the organ grows afterwards. It happens the other way around, too: an adult liver can be split in half and put in a young recipient.
Right now, there are 19 pediatric patients – anyone under 18 – waiting for a life-saving organ transplant in Ontario. In the past five years, there have been 416 transplants in the province performed using organs from pediatric organ donors. That’s 416 lives saved by children.
A single organ donor can save eight lives: his or her heart, lung, liver, kidney and small bowel can help recipients on a wait list.
Children’s organs are also donated to science – in one story, a doctor said they’re “worth their weight in gold” in the medical community. Unlike adults whose organs have been marred by smoking, alcohol, pollution and other toxins, the daily harm on kids’ organs is minimal.
“Their hearts, lungs, liver – even if they’ve gone through some trauma in the process – seem to recover so much better,” Dhanani said.
There’s cord blood, which helped pave the way in stem cell research. Kids’ organs also have regenerative properties.
After the Bostons were approached, they had some time to think it through. The couple slept, and woke up with clarity. They’d taught Keanan to share and to put others before him – the answer was intuitive.
“This would be an opportunity for his heart to not stop beating and other body parts to live on. The biggest thing was his heart,” Cheryl said.
With the help of a TGLN representative, they combed through which organs they were comfortable with donating. With the wheels set in motion by the Bostons’ decision-making, other families torn apart by their own loved ones’ ailments received phone calls in the still of the night.
Three people were a match – Keanan was weaved into their life-changing story.
Organ donation is akin to a closed adoption, Cheryl said. The families now tied together can communicate but only through the TGLN and without any specific descriptors. The Bostons already received letters from two of three of Keanan’s donor recipients.
The heart recipient’s parents wrote one year after Keanan’s passing while the kidney recipient – an adult man – wrote to the family shortly after surgery.
“You feel like you’re holding a piece of Keanan when you hold the letter. You start thinking of Keanan helping this man get a job or play basketball,” Cheryl said.
The little girl with Keanan’s heart was in a life-or-death situation, her mother wrote to Cheryl.
“To know every celebration with her family who has her around is because of Keanan is overwhelming. Now they have a daughter they can hug and hold,” she said.
The couple raised $27,000 for SickKids Hospital in Keanan’s name. They’ve also raised another $11,000 for playground equipment and kids play products at a local Ontario Early Years Centre.
They also talk to frontline health care workers, sharing their story in hopes of removing the stigma in talking about organ donation. At an event, a nurse who treated Keanan told his parents she read the baby boy his favourite book – Goodnight Moon – before he went under for the surgery, just as his parents requested.
Keanan is a big brother now to a three-month-old named Connor. The Bostons say Connor will grow up knowing who his brother was and what he’s done.
“A real-life hero,” Kevin said.
“I’d rather be holding him. We cry every day, we miss our little boy but what he’s been able to do in helping others is something that will always stick with us,” he said.
“Our decision has given us strength at the end of the day when we feel so low and we miss him so much. We know he’s still around. It’s a decision we’d make over again,” Cheryl said.
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