Be the Match need Blacks to join their registry
By Charles Hallman
The need for African Americans to sign up as organ donors has been promoted through several local and national initiatives. Here in the Twin Cities, a one-year-old is waiting for a donor to step up to the plate.
Artan Warsame has Severe Combined Immune Deficiency (SCID). “We are getting ready for the transplant,” Artan’s father Abdullah Warsame told the MSR last week. He hopes that the surgery will take place in September.
Born on March 29, 2011, Artan is Abdullah and Sheyhan Warsame’s first child. They started seeing something wrong with Artan almost immediately after he was born. “Probably when he was two weeks [old], we saw these little pimples appearing on his face and on his arms, looking like he was getting chicken pox,” his father explains. “We went to his pediatrician, and she looked at his skin and couldn’t determine what the problem was.”
They were then referred to a specialist, who diagnosed that Artan’s body “had more max cells that it needed” and prescribed four different medications, says Warsame, who adds that they also saw more doctors, including one who checked for allergies and a skin specialist. Last August Artan started developing lung problems, and after a chest X-ray his pediatrician said the child had pneumonia and prescribed more medication, says Abdullah. “His breathing issues led him to be hospitalized because it got worse and worse.”
At the Minneapolis Children’s Hospital emergency room, doctors found the baby had a 102-degree temperature and admitted him for seven weeks: “Through the process of observing him, we ended up later finding out that he had SCID,” Warsame explains.
SCID is the most severe of the body immune defense system diseases. It is the absence of T-cells that helps the body attack infections, and a lack of B-cell function that makes up antibodies. If these defects are not corrected in a child with SCID, he or she will die before their first or second birthday.
Artan’s skin and breathing issues were all related to this condition. His condition every day got worse and worse to the point where he had to be sedated and could not breathe on his own.
“It’s a helpless feeling to see your child in that much pain,” admits Abdullah. “You can’t ask him, ‘What is wrong with you?’ The hardest thing has been the helpless feeling of not being able to help him with things, or not knowing what he is going through. It’s hard and emotionally very challenging for me and my wife to see his little body deteriorate over time. Seeing our child on life support probably was our breaking point.”
The earlier misdiagnoses unfortunately hurt his son, the father believes. “I don’t want to blame the doctors… When a child is born, there are a lot of different things that they are tested for, but [SCID] is not what they get tested for. If it was, then they would found that out from the beginning and [Artan] would have had the right treatment.”
Watching her son suffer also has been “extremely challenging” for his wife Sheyhan, says Warsame. “She works in the healthcare industry, and she will try to be there for him and do all the things she could. But it is really hard when you don’t know what is going on.”
Until recently, Artan has been home and both parents have taken care of him. They regularly take their son to Children’s Hospital every three weeks for further treatments. “He is in isolation right now and [the hospital] keeps him away from everybody so that he doesn’t get exposed to any viruses, colds or anything like that,” says the father.
The African American Community Health Advisory Committee (www.aachac.org) says that only about 200,000 potential donors — about six percent — are Black. This means Blacks receive just over three percent of transplants compared to 85-88 percent for Whites. Bone marrow transplants are “considered the only real ‘cure’ for some 60 different illnesses,” reports the AACHAC.
Finding the right donor for the Warsame’s son “is not based on blood type but it’s really based on having the same racial and ethnic background,” notes Renee Ochs, a local nurse. “Right now we have extremely low numbers of non-Caucasian donors on the registry for patients like Baby Artan.”
Blacks and other people of color are less likely to sign up as donors, especially for kidney transplants, says Ochs. “So when we are in need of a bone marrow transplant, kidney transplant, or some kind of organ transplant, it’s hard to find a match for us because we don’t have an understanding of what that involves.”
“The reason why it has been so challenging for my son to find a donor [match is] because there has not been a lot of minorities registered to be donors,” adds Warsame.
“We have very low numbers right now on the donor registry of Somali decent,” says Kristine Reed, who works in donor and community recruitment for Be The Match. “In addition to Baby Artan, we have three other pediatric patients that we currently are trying to find donors [for],” she adds. “Two are African Americans and one is part African American and part Native American.”
It’s very easy to sign up as a donor, “a very simple process,” explains Reed. “It only takes about 20-30 minutes. It involves two things: filling out a confidential registration form, and after that it involves a painless cheek swab — four swab sticks — where we ask people to swab a particular area of their mouth for about 15 seconds each. And that’s it to join the registry.”
Sheryl Harris learned about Be The Match at the annual Church Olympics held on the North Side earlier this summer. “The reason why I wanted to be a donor was because my mom passed away in March from a disease that if she had been able to get a match donor, she would still be here.”
Harris was later rejected as a donor “for a couple of reasons,” Harris says. She agrees with Reed on the simplicity of being tested to be a donor and now serves as a local Be the Match ambassador.
Artan’s health issues have taken a financial toll on his parents, which Reed can attest to. “I had leukemia — I needed to go through a marrow transplant 13 years ago to survive,” says Reed. “Our expenses were [around] $600,000. A lot of it was covered by insurance.”
Artan’s transplant operation either will take place in Minneapolis or in Rochester. “It is not only the cost of the transplant but everything else that goes along with it: taking time off from work, finding temporary housing and things of that nature,” Reed explains.
Artan’s mom took off work during his seven-week hospital stay last year, and his father’s job at a bank was their family’s only source of income. Next month, Abdullah says he will take time off without pay while his wife works.
“That will also put financial stress on our family, but we will do our best to make it through,” he says.
The National Marrow Donor Registry not only represents the United States, but also 40 registries from other countries as well, explain Reed. “So if we can’t find a donor for a patient like Baby Artan in our registry, we reach out to the 40 international registries, and his donor could easily come from those registries.”
A Be the Match information session is scheduled Sunday, August 26, immediately after 11 am service at Wayman AME Church, 1221 7th Avenue North, Minneapolis.
For more information on becoming a donor, call 1-800-MARROW-2.
Charles Hallman welcomes reader responses to firstname.lastname@example.org.
Photo courtesy of the Warsome Family