When you think of organ donation, what comes to mind? For adults, deciding to give the gift of life can be as easy as checking a box at the RMV.
But kids need organs too, and that means we need pediatric donors, as well.
Last year in the United States, 115 children died waiting on a donor organ, according to the Organ Procurement and Transplant Network. Currently, nearly 2,000 children under the age of 18 are on the national transplant waiting list; more than 500 of them are between 1 and 5 years old.
In the New England area alone, there are 66 children waiting for a lifesaving transplant, according to New England Donor Services.
Children in need of an organ transplant often wait longer than adults for available organs. As pediatric patients, they may face unique challenges.
“An organ must be size matched, it does not need to be age matched,” said Dr. Betsy Blume, Medical Director of the Heart Transplant program at Boston Children’s Hospital. Therefore some older children can get organs from small adults, but in many cases, an organ for a child must come from another child.
Pediatric organ donation is a difficult subject. The loss of a child or infant is always tragic, and the option of organ, eye and tissue donation is especially hard on parents, who are the decision makers in such an event.
Here, you’ll meet families on all sides: A father who faced an unthinkable decision after losing his teen in a car accident. A boy whose life is on hold until he receives a new heart. And two moms brought together by a lifesaving gift.
They say when you have a child, a piece of your heart walks outside your body. For John Reid, that piece beats inside the chest of a man he’s never met.
Six-hundred miles away from his home in Virginia, a man in Massachusetts lives, in part, because Reid’s 16-year-old son died.
Dakota Reid was that popular, gregarious kid that everyone loved. After high school, he wanted to become a welder. His father remembers him with honesty; he had a heart of gold, but he could be testy, too.
“I guess he was your typical teen,” Reid said.
In January 2019, Dakota was a passenger in a friend’s car that was t-boned on a busy Virginia highway. Both boys, juniors in high school, were killed in the accident.
“As soon as they told us, my heart was torn from my chest,” said Reid. “It just ripped my heart out.”
In the midst of unspeakable grief, Reid faced a gut-wrenching decision. Hospital staff asked if he would consider donating Dakota organs.
One person, like Dakota, can donate up to eight lifesaving organs -- the heart, two lungs, two kidneys, the liver, pancreas, and intestines. One eye and tissue donor can also save or improve the lives of up to 50 people.
It was something Reid had never really considered. After all, who thinks of such a tragedy involving their child. But he took some comfort in knowing that he could turn his loss into life for someone else; in knowing that in some way, Dakota could live on through others.
Reid remembers walking alongside Dakota’s hospital bed as it was wheeled to the operating room. Lined with doctors, nurses and staff, he said it felt like it was a mile long -- the longest mile of his life, but also somehow the shortest.
“Then, it was time to say our ‘see you soon,’” he said.
In the 15 months since he lost his son, Reid has ridden the ups and downs of grief. There’s an aching, gaping hole in his heart.
But letters from strangers have brought him some peace.
“I got a letter from a 21-year-old young man telling me he can see for the first time and thanking us for Dakota’s corneas. Got a letter from a farmer thanking us for Dakota’s pancreas and kidney,” he said.
Reid selected the recipient of Dakota’s other kidney -- a 19-year-old man his niece knew who had been living on dialysis. After the transplant, the teen’s family threw a cookout for Reids in Dakota’s honor.
But the most poignant moment since Dakota’s passing happened just recently. It came by way of a package, sent from Massachusetts.
Reid broke down in tears as he opened the special gift he received in the mail: a teddy bear that played his late son's heartbeat.
The gift came from Bob; the recipient of Dakota’s heart. The Massachusetts man, who had been on life support after a heart condition suddenly worsened, was given a second chance at life when he received the heart transplant. To show his gratitude, he taped his heartbeat during an annual checkup and put the recording in a Build-a-Bear dressed in a shirt that said "Best Dad Ever."
Sometimes, when he’s thinking of his son, Reid will press the bear’s paw and listen to the heartbeat. It reminds him of the gift Dakota gave to so many families.
“I want people to know how powerful it is to give the gift of life. It allows God to heal and comfort you. It brings you peace and closure,” he said. “My son is a hero, and through a miracle, he lives on.”
Six-year-old Carlos Rolon awaits such a miracle.
For the last four years, Carlos has been waiting for a new heart. For the last six months, he’s been living at Children’s Hospital in Boston.
About 60 miles away from his home in Worcester, over an hour away from his bedroom, his friends, and his big brother and sister, he stays within the walls of the hospital, waiting for the transplant. He's not strong enough to leave, doctors say, though you might not know it from his playful smile.
We met Carlos 187 days into his stay, when he showed us the hospital’s massive fish tank and his favorite spot to linger, in front of a giant kinetic ball sculpture. Toting a wind-up blue dinosaur and sporting a Toy Story backpack, he looks like any other first-grader. But instead of books and toys, the backpack holds a pump that delivers his heart medication through an IV. And just months before, he was too sick for even this walk around the hospital lobby.
Doctors and needles are nothing for new for Carlos. His mom, Sheena Cossette, learned he had a heart condition when she was five months pregnant. Born with an unbalanced atrioventricular canal defect, an abnormality of one of the four chambers of his heart, Carlos endured four heart surgeries before he turned 2.
Then, doctors decided he needed a transplant.
When Carlos was first placed on the transplant list in early 2016, he was a status 1B; sick enough to need a transplant, but well enough to live at home. For his family, everything changed.
“When you’re waiting, it’s like you’re living on eggshells,” Cossette said. “The minute you get the call [that an organ is available], you have to be ready. I used to stay up at night because I was afraid the call would in the middle of the night, and I wouldn’t hear it.”
Still, she wanted Carlos to have as normal of a childhood as possible. She encouraged his goofy and playful personality and fought for him to have a one-on-one nurse so he could go to kindergarten. Last year, he was the first child in the city of Worcester to go to school while on milrinone, a medicine for the symptoms of heart failure that’s delivered through a continuous infusion.
But last summer, things took a turn for the worse. Carlos got an infection in his PICC line, and was septic.
Since Aug. 31, he’s been living at Children’s Hospital, spending the first 108 days there confined to his room.
Four days a week his mother stays in the hospital with him, sleeping by his bedside. The three days a week she trades off with Carlos’s dad, Cossette heads home to see her other children and work her two jobs.
“There is no date when we’re coming home, and that’s what’s getting really hard,” she says. “We’re just here until he gets his heart.”
Now a status 1A, he’s as high as a person can be on a transplant list. Carlos knows what he’s waiting for, but he’s shielded from the details.
“We introduced the idea of a transplant to him during this stay. I didn’t want to tell him too much because I didn't want to scare him, but now he knows ‘after I get my heart, I get to go home,’” said Cossette.
Sometimes Carlos’s mind wanders. Will they cut him with a knife? he asks his mom. She worries about the day that he’ll ask where his new heart will come from.
“We’ll tell him it’s coming from someone who doesn’t need it anymore,” she said.
And that’s where Cossette really struggles.
“My biggest struggle is knowing another child has to pass. For the longest time I felt like praying that he gets a heart meant I was praying for a little child to pass,” she said.
It helped, she said, to see a post on Facebook from another Worcester mom who lost her teenage son in a shooting and donated his organs.
“She said to people who received the organs, ‘please don’t feel guilty, my son is living through you,’” Cossette said.
She thinks of what she would tell someone faced with the decision of donating their child’s organs.
“It is the most selfless act. The most precious gift you could ever give is the gift of life,” she said. “Their child would be living through my son.”
For the Rescsanski family in Connecticut, the gift of life came not from loss.
Instead, they gained more than they could have imagined.
“My husband calls her Cal’s ‘liver mom,’” Beth Rescsanski said of Andrea Alberto, who was a stranger to the family when she donated a piece of liver to the Rescsankis’ then-11-month-old son Callum last year.
In turn, Alberto’s children Jack and Ben refer to Cal as their “liver brother.”
For the first year of his life, little Cal never knew what it was like to not be sick. Born with biliary atresia, a rare disease of the liver and bile ducts that occurs in infants, he endured major surgery when he was just one month old.
At six months, doctors decided he needed a new liver, and Cal was placed on the transplant list. While some transplants can be done using the organs from a deceased person, Callum needed a piece of a living organ in order to give his liver the chance to regenerate. A child's liver can regenerate into a normal size within just a few weeks.
A new mom looking for guidance and support, Rescsanski had been sharing much of her journey on a Facebook group for moms even before she knew Callum was sick. As fate would have it, Alberto, a single mother who lived a couple hours away in Medfield, Massachusetts, was part of the group, too.
After seeing that Cal was in need of a live donor, Alberto was among 100 moms who offered to be screened as a potential donor. She was a perfect match.
Cal would need just a piece of Alberto’s liver, but still, it was a weighty decision. Last fall, Rescsanski and Alberto, two moms connected only by social media, went out to dinner to discuss moving forward with the lifesaving transplant.
“We didn’t want to put a lot of pressure on the situation, we just wanted to do what felt right,” said Rescsanski.
But Alberto always knew that organ donation was something she was willing to do.
“I think that people think it takes someone special, or different, to do this. But anyone can,” she said. “I like to think that if it was one of my kids in need, someone would step up.”
But what Alberto did was pretty special. In September, she left her two sons, ages 5 and 8, and traveled to New Haven, Connecticut, for surgery.
In his own 10-hour surgery, Cal received a slice of Alberto’s liver.
In the months since the transplant, Rescsanski has watched her baby flourish. No longer jaundiced, his skin is healthy and rosy. No longer sick, he toddles around, as giggly and inquisitive as any other 15-month-old.
Naturally, the moms have forged a friendship, and their families have become close. They chat regularly and have visited each other’s homes. They are both passionate advocates for organ donation.
"If you are open to the idea of donation, get more information," Alberto said. "You don't need to wait until it's a family or friend who needs an organ; odds are, they never will. But someone else's loved one already does need your organ.”
Post-surgery, Alberto took to Facebook to express what the experience meant to her.
“They tell you in donor evaluation that you, the donor, don't 'get' anything out of donation. Looking back … I disagree,” she wrote. “My liver couldn't have asked for a better home. It's going to go to Kindergarten and learn to drive a car. It will get to eat lots of birthday cake and play sports and go to the prom. How lucky is that liver? And honestly, it has never looked cuter. I can't wait to see the places Cal takes it.”
What potential donors should know
If you’ve ever thought about organ donation, know this: anyone can be a potential donor regardless of age, race or medical history. You can sign a donor card, state your wishes on your driver’s license, or register through Donate Life (donatelife.net).
Adults can also be living donors, choosing to donate a kidney, bone marrow, or part of their liver to someone in need.
Teenagers ages 15 to 17 may register their intent to be an organ, eye and tissue donor while registering for a driver’s license.
But what about children?
Perhaps we miss an opportunity to talk about organ donation when kids aren’t sick. Many families, like the Reids, only begin thinking about it after an unspeakable tragedy. Then, parents are presented with a huge decision in the worst moment of their lives.
“It is intimidating to discuss organ donation with children and family members,” said Dr. Blume. “Talking about organ donation at the dinner table while everyone is healthy allows for the discussion and decisions to be made as an everyday decision.”
While organ donation among kids and teens is an understandably difficult topic to broach, parents’ misconceptions may further complicate the process.
According to a 2018 study by C.S. Mott Children’s Hospital, parents of younger children are less than comfortable with organ donation. Only 17% of parents of children 0-14 years said they would like to learn more about organ donation. About half of parents reported major concerns about whether their child would get all treatment options in a life-threatening situation.
Other concerns were not knowing if they could decide which of their child's organs would be used for transplant, and the potential cost of organ donation.
Few parents said their religion did not support organ donation, while 6 percent of parents said their only major concern was that they just didn't want to think about organ donation.
"It is important for parents to know that registering their child as an organ donor will not negatively affect medical care in any way, nor would their child experience any pain," said Dr. Gary Freed, co-director of the study. "There is also never a cost to the donor's family for organ donation."
Dispelling misconceptions could help parents feel more at ease with discussing the uncomfortable topic, he said.
“We may benefit from a national, organized mechanism for parents to gain information regarding organ donation,” Freed said.
Parents can learn more about the subject at donatelife.net or unos.org.
In 2018, more than 1,800 children received life-saving transplants, matched from over 800 pediatric organ donors. While the donors ranged in age from newborns to 17, most were between 11 and 17 years old — though in 2018, more than 100 pediatric organ donors were babies under the age of 12 months.
Additionally, every year, thousands of pediatric cornea and tissue donors help restore sight and save and heal lives.
Each number represents a child getting a chance at life.
“We should highlight the message of ‘gift of life’ of our organs once we do not need them anymore,” said Dr. Blume.