When Nene’s newborn screening came back abnormal, his mom, Afua Antwi, was referred to the hematology team in the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta. They conducted additional blood work and diagnosed her first-born son with beta thalassemia, a blood disorder that reduces the production of hemoglobin.
Afua and her husband, Frank Amoyaw, worked closely with Marianne E. Yee, MD, Pediatric Hematologist and Oncologist in the Aflac Cancer and Blood Disorders Center, to learn exactly how Nene’s diagnosis would be treated. Monthly blood transfusions began when he was only 6 months old. Doctors were also keeping an eye on his iron levels. Nene was put on daily iron chelation medicine to help remove excess iron from his body due to his monthly blood transfusions.
When Nene was 2 years old, he underwent a blood and marrow transplant (BMT), which was supposed to cure his blood disorder. However, a year after his first transplant, doctors noticed Nene was losing donor cells. He started experiencing stomach pains and had to be admitted to the hospital.
“Thankfully, the donor gave us twice as many donor cells as Nene needed in his first transplant, so we were able to use those again,” says Afua.
The thought of Nene undergoing his first BMT was scary, and it was even more frightening during the second for his family. But, doctors in the center were very supportive in helping Afua’s family understand the BMT process, and before Nene’s fourth birthday, he underwent a second BMT—it was successful.
Before each BMT, Nene had to undergo chemotherapy treatments to help wipe out his unhealthy blood cells and prepare him for the transplant. This required isolation for several months, but Nene was a champ.
“He dealt with it well,” Afua says. “The first few days after the transplant were hard on Nene, but he bounced back and was full of energy.”
Before the successful BMT, Nene couldn’t go to daycare or school because his immune system was compromised. Today, the outgoing, outspoken little boy who loves Hot Wheels and Transformers is really enjoying going to kindergarten.
He also doesn’t mind going back to the hospital for follow-up appointments with the team in the Aflac Cancer and Blood Disorders Center, just to confirm he’s not losing any donor cells from the transplant.
“He’s been so good,” Afua adds. “He has so much energy and is doing well. The doctors have also been very great with us.”
Since beginning this process, Afua and Frank have learned that beta thalassemia is a genetic disorder. They are both carriers of the blood disorder, as are their twin daughters, but none of them show symptoms.
Their family will forever be thankful to the Aflac Cancer and Blood Disorders Center team for healing their son, and they couldn’t be happier with how wonderful the staff at the center was. “They make the children feel at home,” Afua says, “and they do everything possible to make the families feel OK.”