The girl in a quinceañera gown beams from a photograph in Marta Gonzalez’s living room: a keepsake of her daughter Sabrina Couillard’s coming of age before she lost her waist-length hair.
One moment the combined family of eight was enjoying an outing at Disney World. The next, they were rushing the 14-year-old to a local hospital until she could be transferred to Miami Children’s Hospital near their West Miami home.
Gonzalez’s daughter had a recurring type of leukemia that could not be cured by chemotherapy. She needed a bone marrow transplant. But a search of the world’s major donor registries found no suitable tissue match, a problem shared by many, particularly among Hispanics and African-Americans.
So Dr. Kamar Godder, director of the Bone Marrow Transplant Program at Miami Children’s Hospital, performed an alternative procedure using two donated umbilical cords.
“The concern with bone marrow is that without a close match, the recipient body could reject it as ‘non-self,’ ” the Israeli-trained Godder explained. “Cord blood has the same blood stem cells as bone marrow, but because newborns haven’t been exposed to infection, the blood has no ‘memory.’ It works beautifully.”
A single cord graft can support a child up to about 80 pounds. The double cord transplant Sabrina received is a proven but still new procedure using two unrelated donors.
“The double cord supports a larger person, like the teenager. But how it works is still a mystery to doctors,” Godder said.
Sabrina’s transplant process began with full-body chemotherapy to destroy her immune system so it could be replaced. Two frozen bags of cord blood were thawed and pumped intravenously through a small catheter. Mother and daughter still remember the blood’s scent — “like tomato juice.”
Then came 48 days of isolation in the hospital to prevent infections while Sabrina’s immune system was recovering. Gonzalez slept next to her daughter in a pullout chair.
“It was rough. Sabrina kept me strong,” she said.
The shortage of bone marrow donors for Hispanics and African-Americans began as a result of economics, said Dr. Martin Andreansky, director of Holtz Children’s Hospital’s Pediatric Bone Marrow Transplant Program at the University of Miami/Jackson Memorial Medical Center.
“Because the transplant is very expensive, the registries are historically based in wealthy countries, where most of the donors are of white European descent,” Adreansky explained.
Blacks represent about 7 percent of registry donors nationwide; Hispanics, about 10 percent. Both figures are well below their population ratios: Blacks accounted for 13 percent of the U.S. population in 2012, Hispanics, 17 percent, according to the U.S. Census Bureau.
“That doesn’t represent who needs transplants,” Adreansky said.
Adreansky’s colleague Eva Williams is leading a study to learn more about why blacks and Hispanics are underrepresented in donor registries. As part of the study, Williams conducted focus groups in Hialeah, Little Haiti and Oakland Park.
“We found lack of knowledge and fear were the biggest factors. The people most likely to donate were those with a family member who encouraged them,” Williams said.
Sabrina’s brother Yannick, 20, would agree. Today he and his mother, as well as many of their friends, are registered with Be The Match, the world’s largest and most diverse marrow registry, operated by the National Marrow Donor Program.
“If you had asked me before this to donate blood, I would have said no way,” said Yannick.
Bone marrow donations start with a pledge and a swab of the cheek to determine tissue type. The swab provides information about your body’s HLA — or human leukocyte antigen, which uniquely marks the cells so your immune system can recognize foreign cells and fight them off. The registry stores the information until a matching need arises. The stem cells are harvested through a simple procedure at a donation center or hospital.
Cord blood donations have the advantage of being readily available. Blood from the umbilical cord and placenta is collected after birth — no blood is taken from the baby — and frozen in a sterile bag at a public cord blood bank until needed.
Today, Sabrina is leukemia-free, according to her doctor, although she still spends most of her time at home to avoid exposure to infections that her immune system cannot yet fight.
“We’re watching her to make sure the cord blood isn’t fighting her body as foreign. She’s had some struggles with that, but it’s not unique. It takes between six months to a year to recover from the complications,” Godder said.
With seven siblings, Sabrina isn’t likely to be lonely. She is keeping up with her schoolwork and is determined to graduate with her eighth-grade class in June.
While stem cell donors remain anonymous, Marta Gonzalez does know that her daughter’s two donors were a male and a female newborn, both of whom are 5 years old today somewhere in the world. One of the two cords always becomes dominant in a double cord graft — in Sabrina’s case, it was the male cord, her mother said.
“Sabrina will grow up like any woman, but with a boy’s immune system,” Gonzalez said. “If I knew who and where those donors were, I would say ‘Thank you. Thank you for saving my daughter’s life.’ ”