By Maria Salette Ontiveros
https://www.dallasnews.com/
Brittany Clayborne remembers the day her health crisis began in 2010. She had just given birth to her son, Micah, and was home recovering when she suddenly couldn’t breathe.
“It was like they were lying me down underwater,” she said. Doctors diagnosed her with peripartum cardiomyopathy, a weakening of the heart muscle due to pregnancy, according to the National Library of Medicine.
While her newborn son remained in the neonatal intensive care unit, known as the NICU, Brittany was rushed to the cardiac ICU.
What doctors thought would be a two-year recovery turned into a decade and a heart transplant in 2021.
Two years later, chest pain at tennis practice sent now 14-year-old Micah from the court to the ICU. He learned his heart was functioning at just 7%, and he needed a heart transplant. Micah was added to the list for transplant in 2023 and received a new heart in October 2024.
Now both mother and son provide inspiration, education and empowerment to others. The Claybornes are organizing a Transplant Teenz Block Party to commemorate World Transplant Day on June 6, aiming to connect pediatric and adult transplant recipients, their families, and donor families.
Both of their heart problems traced to Danon disease, a rare genetic disorder with only 300 documented cases worldwide, according to the National Library of Medicine.
After Brittany’s heart attack after giving birth to Micah in 2010, her recovery stretched into years of cardiac arrests, hospital stays, and eventually a spot on the waiting list for a new heart.
Between June 2015 and August 2016, Brittany said she spent a total of nine months in the hospital. To cope, she enrolled in a master’s program, completing it during that time.
“There weren’t a lot of educational resources on organ transplants for Black and brown communities,” said Brittany, who is African American. “It was about deciding: Am I going to let this take a chunk out of me, or am I going to take a chunk out of it?”
Hospital routines became familiar: FaceTime calls with her son from her hospital bed, online classes to fill the long wait for a donor heart and a mechanical heart that kept her alive for two years.
A new heart finally arrived in January 2018, but a battle with stage 4 cancer followed the same year. She completed a doctorate in 2020 at the same time that she was declared cancer-free.
The same rare diagnosis — Danon disease — emerged in Micah, who had shown no warning signs before his collapse at age 14.
“This is the worst case of hypertrophic cardiomyopathy I’ve ever seen,” a doctor told Brittany. “I have kids in the ICU with their hearts functioning at 15%, and his is at 7%.”
An electrocardiogram revealed the extent of his heart failure. Genetic testing confirmed Danon disease.
Danon disease is an inherited condition that primarily affects the heart and muscles, characterized by cardiomyopathy — in which the walls of the heart chambers become stretched, thickened, or stiff — muscle weakness, and intellectual disability.
It is caused by a mutation in the LAMP2 gene, which is responsible for producing a protein needed for proper cellular function, according to the National Library of Medicine.
While his mother attended caregiver support groups, Micah found no similar resources for teens.
“Mama was going into her caregiver meeting, and I said, ‘Where’s mine?’ Because they had a caregiver group for mothers, and I said, ‘Where’s mine?’” Micah said.
He launched Transplant Teenz, a support group now connecting 44 teens in the U.S. and others internationally, including members in Ghana, Canada and Australia.
Transplant Teenz offers a space for young recipients to connect, share experiences, and find support.
“It feels good to know that I’m providing people with the system that I never had,” Micah said.
Brittany and Micah are hosting a transplant block party at 5:00 p.m. Friday to celebrate the idea of community at 8190 Manderville Lane in Dallas.
The celebration is for anyone who is waiting for a transplant, you’re a transplant recipient, a donor family, or part of the transplant care team, according to their website, transplanttz.org/party.
This story, originally published in The Dallas Morning News, is reprinted as part of a collaborative partnership between The Dallas Morning News and Texas Metro News. The partnership seeks to boost coverage of Dallas’ communities of color, particularly in southern Dallas.
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