By Chris Allen, American Red Cross

When Gabrielle Carter was two-and-a-half months old, her mother Debbie got terrible news. Gabrielle had sickle cell.

That began a seven-year relationship with the American Red Cross that Debbie says saved her little girl’s life. The effort to keep Gabrielle alive started when she was a week old. Both of Gabrielle’s parents had the sickle cell trait, but not the disease.

Gabrielle was born in Cape Girardeau, Missouri, in 2006. “When she was born, I knew there was a possibility she would have it, so I went to a geneticist,” Debbie recalled. “My pediatrician used the new-born screening, so when she was a week old it indicated she had either the trait, or the disease.”  10 weeks later, the devastating result came back. Gabrielle had Hemoglobin SS sickle cell, the most severe form.

“I had to take her to Children’s Hospital in St. Louis. I was there three or four hours with them explaining what the disease was, life expectancy, what her life was going to be like.”

Sickle cell, also called sickle cell disease or sickle cell anemia, is a deformation of red blood cells. They become sticky and stiff, taking on the shape of a sickle. They cannot carry oxygen to the organs properly. That leads to blocked blood flow, especially in the small capillaries and veins, which causes severe pain and organ damage.

“Most people don’t die of the disease,” Debbie explained, “they die of organ failure caused by the disease.” At the time, a person with sickle cell was not expected to live past 20.

Gabrielle received her first blood transfusion at only 10 months, before she could even walk. Her damaged cells could not carry enough oxygen to her body, and she had become listless and inactive, with no energy typical of a thriving infant.

“She was laying on me. Within 10 or 15 minutes she was sitting up and perking up and she wanted to get down. Her color came back and she wanted to play. I said what’s wrong with her, and they said she has the good blood. And I joked, I don’t know if it like that. She was all over,” Debbie shared.

It was to become her way of life.

“So many people came forward wanting to donate,” Debbie said. Most were from the church she attended. She sent them to the Red Cross and urged them to keep going. Gabrielle’s blood type was A-negative, and she needed an increasing supply to stay alive.

“It got to a point she was getting transfusions two or three times a month,” Debbie said, “and that’s not counting when she would have a crisis and go to the hospital. Some of the transfusions were done in Cape Girardeau, but for the most part they were done in St. Louis, a two-hour drive away.  “Donors would give through the Red Cross here. Then it was sent to Children’s Hospital in St. Louis,” she said.

It did not take long for Gabrielle’s sickle cell disease to get worse. At age one she had her spleen removed so her blood would not get trapped there and further jeopardize her life. By age two, the number of transfusions gradually increased to two or three times a month.

At age four, Gabrielle was getting weekly transfusions to prevent a stroke. “They told us it was not a matter of if she would have a stroke, but when.”

Gabrielle’s need for blood was massive, and the Red Cross was able to supply it with the help of her friends in Cape Girardeau and donors elsewhere. But something more drastic was needed to save Gariella’s life. And that’s when her doctors began talking about a bone marrow transplant.

Debbie was fortunate enough to have a job that gave her the flexibility to make the frequent trips to St. Louis, and to care for Gabrielle when she needed to. But a bone marrow transplant was going to be a year-long project, and Debbie had to make plans.

“I started planning a year in advance,” she said. “I gave up our townhouse and moved in with my mother to save money.”

Barnes-Jewish Hospital in St. Louis located a bone marrow match for Gabrielle, but a blood condition derailed the plan. Someone from Debbie’s church came forward to donate blood from her umbilical cord. It was a treatment for sickle cell that had never been tried before. By this time nearly 90 percent of Gabrielle’s blood cells were sickle cells. And at age six, Gabrielle became an experiment.

The umbilical blood transfusion resulted in a tidal wave of complications. Most dramatic was that Gabrielle’s blood type switched from B-positive to A-negative because of the stem cells in the new blood. But Gabrielle’s organs were still B-positive. The new cells didn’t like her organs. The condition is called graft vs. host disease, when the blood recognized her organs as enemies and attacked them. “Everything they said could go wrong did go wrong,” Debbie said. “I almost lost her twice. They usually give you the “worst case” possibilities, but they didn’t have that for her. She was the first one and they didn’t have anything to go by. I call her ‘ground zero.’”

Gabrielle missed her entire first grade. She was isolated because her new blood had not built up any resistance to infections. A cold could be fatal. She could not be around friends, which Debbie says really hurt her because she was a very social child.

Despite many trips back to St. Louis when pain from the complications became too severe, Gabrielle slowly recovered. And at eight-years-old, she was declared in remission. The sickle cells have never returned.

Gabrielle is now 19, a sophomore at Southeast Missouri State University, studying interior design and living in the dormitories. She has taken trips to visit St. Jude’s Hospital and Ronald McDonald House in Memphis and share her story.

For her part, Debbie returned to work at the university, and then just last year, left to become chief executive officer of Boys and Girl Clubs of Southeast Missouri. She has become an advocate for all sickle cell patients, not just for Gabrielle. She talks to a lot of parents whose child has been diagnosed with the condition, and can tell them what to expect, what questions to ask, and where to find help.

Throughout the nearly 20-year experience, the Red Cross has been a solid partner. Debbie’s uncle even became a Red Cross volunteer, transporting blood from blood donation drives because of the experience.

There is a constant need for blood, especially in cases like Gabrielle’s. Debbie’s message to donors and those thinking about donating is “You guys are life-saving. Don’t be afraid to give because giving saves lives, Red Cross donors saved my daughter’s life.”

To learn more about sickle cell disease, click here and to make an appointment to donate, please head to redcrossblood.org to find the closest drive to you.