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 “I knew that I carried the trait and that my husband carried the trait, but it was one of those times when you think it won't happen to me,” Tracey recalls.
Tracey and Raymond Johnson remember the exact day that they found out their twin boys had Sickle Cell Disease. Christian and Christopher were two months old when they were diagnosed.
“I remember being very afraid, you hear more horror stories than triumphs," reveals Tracey. "But life went on, and there were times when I would be at the hospital with one, and come home and have to go right back to the hospital with the other.”
Christian and Christopher were born with Sickle Cell Disease, an inherited blood disease with affects that can range from mild to devastating. The hemoglobin of patients with Sickle Cell Disease causes red blood cells to change into a curved, sickle shape. Unlike healthy red blood cells, these cells become stiff and sticky, and form plugs in small blood vessels. Patients with Sickle Cell Disease can experience strokes, lung, tissue and organ damage, serious infection, resulting in sudden unpredictable pain. Almost one in every 375 African American infants is born with Sickle Cell Disease. There is no cure, but blood transfusions and good medical care can help patients feel healthy and prevent serious problems.
Tracey recalls Christian's first blood transfusion at the age of three. He was sick with respiratory syncytial virus (RSV), a common lung infection in infants and young children that can become severe in premature infants or children with other health problems. Christian was getting sicker by the day. The doctors told the Johnsons that they needed to decide if they wanted Christian to get a blood transfusion, but they worried about the safety of the procedure.
“I remember the doctor and nurses taking us in and explaining the process of a blood transfusion and saying it is one of the safest procedures these days.” The Johnsons decided to let Christian have the blood transfusion. “Twenty-four hours later he was a different person, he was running those nurses ragged,” laughs Tracey. While both sons have received blood transfusions, Christian receives multiple blood transfusions. At age five he received regular blood transfusions once a month. One year later he began platelet therapy, a transfusion process in which cells known as platelets are given to Sickle Cell patients to help prevent bleeding.
“Receiving a transfusion of platelets is hard. He has to sit still for three hours without moving his arm, and the needles are big. I have cried watching him,” Tracey admits.
Christian is thankful for the nurses that help him through his platelet transfusions. He says the needles hurt less because they laugh and talk with him during his treatment. Christian admits he cries sometimes during platelet tranfusions, but the nurses are there for him, “they even wipe your tears for you,” Christian says.
Instead of making the hospital visits for blood transfusions a day for Christian to dread, Tracey turned it into a special day, one that is all about Christian. “I tried to take a day that would seem so dismal and gloomy and turn it into something positive,” explains Tracey.
Tracey and Christian call these days “Mommy and Me Days.” A typical transfusion day begins with a trip to Wawa where Christian picks out the biggest pack of bubblegum he can find and a Mountain Dew (two items that are usually not allowed on an average day). Then Mom and Christian are off to the transfusion, where the nurses treat Christian like a king, paper crown and all. “Afterwards we go to lunch or Toys R Us, it's my job to help him through it,” remarks Tracey. “Dad has started to join in on the special transfusion days too, and we trade off.”
Tracey says it's funny sometimes to listen to the boys talk about the blood transfusions. “I'll hear them ask each other about what it feels like when the blood is going in you.” It comforts the Johnsons to know that the boys have each other to talk to because they know that they can't relate to what the boys go through.
Christian knows that the blood transfusions keep him healthy. “He can run and play football and go swimming, we hardly ever go into the hospital now,” Tracey explains. “I often make the analogy that Christian getting a blood transfusion is the same as a car going to the gas station. Like a car needs to fill up with gas, he has to go and fill up on blood to keep him healthy and active.”
Christian understands that the blood he receives keeps him pain-free, and allows him to lead a healthy, active life. Tracey realizes that without blood donors, Christian and Christopher would not have the quality of life that they do. Now at age nine, the boys are in the 4th grade.
“If I could go to the American Red Cross everyday and thank people personally for donating blood I would,” Tracey remarks. “People don't have to donate, they choose to do it, it's not like having to go to work everyday, they choose to give their time and that's what makes it so special.” To all the people who donate blood Tracey says, “Thank you for taking the time out of your busy schedules to take care of our sons.”
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