Boy who got new heart inspires tribe to boost organ donation

His journey to correct a heart defect led the Turtle Mountain Band of Chippewa Indians to add an organ donation box to tribal IDs, which it unveiled during a November ceremony.

The rate of organ donations among Native Americans is much lower than other ethnic groups. For some tribes, cultural beliefs are a factor. In rural communities, time, distance and spotty internet access can hinder the process.

“You don’t think about donation and how many people are not donors,” said Greyson’s grandmother, Joan Azure. “I was thinking, ‘there has to be more donors.’ When you’re going through this personally, you don’t want someone to die but you also want your child to live.”

Less than 1% of the 100,000 people nationwide waiting for organ transplants are Native Americans, who make up nearly 3% of the U.S. population.

The figures are higher in some states, including New Mexico where 1 in 5 people on the waiting list is Native American. In South Dakota, North Dakota and Minnesota, nearly 5% of patients awaiting an organ donation are Native American.

Greyson had surgery at 5 months to correct a heart defect, then he needed an external device to pump blood through his small body. A heart transplant allowed him to leave the hospital after a year and return to the Turtle Mountain reservation, headquartered in Belcourt, North Dakota.

Suddenly, pneumonia ended his life in September 2019. He was 21 months old.

Greyson’s story and spirit live on in parades, powwows and conversations in the community. Azure promotes organ donation during congenital heart week and with trivia games.

Tribal members knew him well through updates posted on social media.

In one, Greyson’s mother, Reeanne Parisien, asked the community to choose Greyson’s eyeglasses. The overwhelming vote was the dark-rimmed, boxy ones that he wore with bow ties and khakis, his hair combed in a mohawk. When he died, the community sought understanding and assurance that it wasn’t because of his new heart.

His tribe passed a resolution earlier this year in honor of Greyson. During a November event at the tribal college, it encouraged people to check the new organ donor box on tribal IDs and waived the $10 fee.

“Today is a monumental day that people will remember, especially Native nations, for decades to come,” tribal Chairman Jamie Azure said, standing next to Grayson’s photo that was taken after he got a new heart — smiling with arms stretched to the sky.

The tribe believes it could be the first of the 574 federally recognized Native American nations to designate a spot on tribal IDs for organ donors.

Susan Mau Larson, the chief strategy officer for LifeSource, part of a network of nearly 60 organ procurement organizations, said she hopes other tribes follow suit.

Conversations about becoming organ donors or receiving organs from another person can be tough, especially when personal or traditional beliefs don’t align with western medicine.

Those conversations sometimes happen in hospital rooms as someone nears the end of their life. And there are guidelines: Identify the decision maker in a family. Tell a story, don’t explain the process. Give the family time to discuss. Be comfortable with silence. And comfort families, regardless of the decision.

In the Southwest, Darryl Madalena encourages tribal members to think about becoming organ donors by making a connection between kidney disease — which afflicts Native Americans at higher rates than the U.S. population — and organ donation and receipt.

He talks about tribes’ increasing reliance on western medicine and asks, hypothetically, if members would be prevented from journeying on if they had a pacemaker or an artificial hip. If not, why not donate or receive an organ?

“So much of westernized medicine is in the fabric of our communities, our lives, our culture,” he said. “If you pull one string, that may be very detrimental to the health of Natives.”

Madalena’s work with New Mexico Donor Services is partly driven by the memory of his partner, Mylia Phouamkha, a Hopi woman who died within a week of being hospitalized with liver problems in 2019, without enough time to seriously consider a transplant.

She and Madalena had a son together, Micca, who was two years old at the time.

“If your heart tells you and you have it within yourself to have a transplant if you need it …I would say yes, do it,” said her father, Myron Ami, as Micca sat on his lap.

Madalena has faced criticism for mentioning death, which can be a taboo topic. His community of Jemez Pueblo in New Mexico believes that people enter this world physically and spiritually whole, and that they should leave the same way.

“That’s what we’re taught, that’s what the beliefs still are,” he said.

The Turtle Mountain Band of Chippewa Indians doesn’t hold the same beliefs, Joan Azure said. About 40% of people in Rollette County where the tribe is based have signed up to become organ donors, compared to 65% overall in North Dakota.

Education, means or opportunity are big factors, said Mau Larson. Simply getting a driver’s license means traveling 80 miles (130 kilometers) from the Turtle Mountain reservation. But tribal IDs are renewed every two years, giving tribal members a more frequent opportunity to choose organ donation.

Studies show that organ recipients are best matched with donors of similar genetic makeup, Mau Larson said. Kidneys are especially needed in Native American communities, where one-quarter of the population is diabetic, she said.

Greyson and his family spent much of his life in Rochester, Minnesota, for his medical care, hundreds of miles from the rolling hills and lakes of the Turtle Mountain reservation. His heart came from a girl named Coralynn, whose picture on a puzzle piece was interlocked with Greyson’s on a parade float banner reading “Not all Heroes Wear Capes!”

After Greyson died, his family asked a Turtle Mountain elder to to bestow a traditional name upon him, through their creator. The elder was in a sweat lodge praying when it came to him: “Waasizo Gichi Anong Ningaabii’ Anong,” or “Shining Big Star in the West,” said Joan Azure.

“Even in his worst moments, his smile shined brightly, his presence brought happiness and light to everyone he came into contact with,” she said. “And he provided guidance to many with that bright shining light through his bravery and strength.”

Fonseca reported from Flagstaff, Arizona. Fonseca covers Indigenous communities on the AP’s Race and Ethnicity Team. Follow her on Twitter: @FonsecaAP.

Associated Press writers Susan Montoya Bryan in Albuquerque, New Mexico, and Dave Kolpack in Belcourt, North Dakota, contributed to this story.