Sickle Cell Disease Awareness Month: Te’A’s Story
After Te'A was born, her mom got a crash course in sickle cell disease. Now, Te'A is an active teen, chasing hopes and dreams. Learn more about how Te'A has blossomed.
Te’A is a happy 14-year-old who enjoys braiding hair, dancing, shopping, making bracelets and most recently, cheerleading. But while she’s a lot like many of her peers, this Lakewood High School student is beautifully unique.
“Three months after I gave birth to Te’A, I received a letter in the mail stating that her blood was abnormal and she needs to come in for testing,” says Raytoyia, Te’A’s mom.
These were results from Te’A’s newborn screening test that every baby gets after birth. Turns out, Te’A had sickle cell disease.
“I was devastated. I didn’t know what to do moving forward because I didn’t know anyone with the disease,” says Raytoyia. “I had researched it in middle school, and it seemed like something really, really bad.”
“A typical red blood cell should look like a nice, round doughnut with the center filled in,” says Tamara New, M.D., medical director of the Sickle Cell Program at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida. “But patients with sickle cell have cells that are sickle shaped, like a banana, which makes it harder for them to travel through smaller vessels in the body.”
The History of Sickle Cell Disease
Sickle cell has been around for centuries and was typically found in countries with higher rates of malaria, like countries in the continent of Africa or Mediterranean. It’s historically thought that the condition prevented individuals from contracting malaria, a serious and sometimes fatal mosquito-borne disease, by making the red cell more rigid and in turn, making it harder for the parasite to enter. It became more prevalent in the western world a couple hundred years ago.
The Importance of Knowing Your Sickle Cell Trait Status
Raytoyia knew she had sickle cell trait, but Te’A’s father was unaware that he also had it. The two traits combined led to sickle cell disease.
“In order to have sickle cell disease, you have to inherit both a trait from your mom and a trait from your dad,” says Carrie Gann, D.N.P., a pediatric nurse practitioner for the Sickle Cell Program. “Just having one of the sickle cell genes from one parent means you carry the sickle cell trait. That is not sickle cell disease. But it is very important to know if you have the trait. Patients receive a letter in the mail, so it’s extremely important to have your current and updated address on file.”
Gann says many times parents don’t know they have the trait until, like in Te’A’s case, their child is diagnosed with sickle cell disease.
“One in every 365 Black or African American babies born in the U.S. is diagnosed with sickle cell disease, and one in 12 African Americans in the United States have sickle cell trait,” says Gann. “One in 20 Latinos also have sickle cell trait, but anyone can get sickle cell disease.”
If both of a baby’s parents have the trait, there’s a 25% chance that their child will have sickle cell disease and a 50% chance that they will have the trait. There is also a 25% chance that the trait wouldn’t be passed along at all.
Sickle cell disease most commonly causes vaso-occlusive episodes, which are pain episodes due to the crescent-shaped blood cells getting stuck in vessels and blocking blood flow throughout the body.
“Even when the blockages are relieved, there's a lack of nutrients and oxygen to organs,” New says.
Patients are also more at risk for complications throughout their lifetime, with the most severe being stroke and end-organ damage.
Raytoyia knows the complications all too well and had many visits to the hospital with Te’A during her first few years of life. She frequently needed IV antibiotics for fevers and blood transfusions due to her enlarging spleen.
“She’s my first and only baby,” Raytoyia says. “Not only was I a brand-new mom, I was really young, only 19 and in college. But Johns Hopkins All Children’s Hospital was very helpful. They gave me a lot of information. We pretty much got a sickle cell crash course before we left our first appointment. They took almost three hours to go over everything we needed to know and everything I needed to be looking out for.”
By the time Te’A was 3 or 4 years old, she got into a more normal rhythm and she had fewer pain episodes and less trips to the Emergency Center. Raytoyia has become an expert in understanding her daughter’s needs.
“She’ll say, ‘I’m really tired. So we’ll go through a checklist: Does she have a fever? Is she dehydrated? Does she need pain medicine?’” Raytoyia explains. “We see Dr. New and Carrie at the same time, it’s always been two sickle cell team members who help tag team at appointments.”
The Sickle Cell Newborn Screening program covers five counties: Pasco, Hernando, Sarasota, Polk and Pinellas, and the team cares for more than 400 patients ages newborn to 21 across several other Florida counties. Patients in Hillsborough and Manatee counties are notified by University of South Florida’s newborn screening coordinator, but may choose to be patients at Johns Hopkins All Children’s. Each sickle patient is unique and has a treatment plan catered to their specific needs, which includes everything from different medicines to blood transfusions, and even blood marrow transplants, in some cases.
The team is made up of four compassionate experts:
- Medical director: Tamara New, M.D.
- Pediatric nurse practitioner: Carrie Gann, D.N.P., CPNP-PC
- Nurse coordinator: Dawn Gates, R.N., C.P.N.
- Social worker: Lori Wilson, LCSW
The team sees patients at various outpatient clinics, including the Outpatient Care Center, St. Petersburg on the main hospital campus, twice a month at the Johns Hopkins All Children’s Outpatient Care, Tampa with the help of Lisa George, R.N., Nick Park, M.D., and Isaac Hauk, P.A., and once a month at the Outpatient Care, Lakeland with the help of Bethany Houston, R.N.
“They fit right into our family. There isn’t anything that goes on with her that they don’t know,” Raytoyia says. “It’s a community effort to make sure everything is good—from stressors to education.”
Sickle Cell Awareness Month: Breaking Through Misconceptions
New: “It’s important that patients with sickle cell disease get treated with love and respect. Every patient is different. It’s a genetic disorder, there's nothing a parent can do to prevent this besides choosing a different mate or to not have kids. Sickle cell is not an infectious disease, it is a genetic disorder. Our patients often get mistreated, especially younger kids, often treated like they have something that they did that caused them to get this, or the parents may get treated as if they did something wrong in the pregnancy. There is also not enough funding for the disease, it has decreased in the last 20 years or so, which can be frustrating for those working in this field.”
Raytoyia: “During Sickle Cell Awareness Month, I would like people to know that just because a child has an illness or disease, there’s so much more to them. It doesn’t stop there. It’s not the end-all, be-all. A lot of people think you have a disease, you’re just going to die. If you stay on track with your treatments and have the right support systems, and listen to your body, I think you can live a long and healthy life.”
Te’A has big plans for her future, and knows she could have a special connection with patients like herself one day if she chooses a career in the medical field. She is in good hands to prepare for her future, as the Sickle Cell Program team starts preparing patients for life with sickle cell as an adult and being advocates for themselves once they turn 13.
“For forever, I wanted to be a hematologist, but then I thought about it, and I want to travel. I love traveling, and I also want to be a doctor or nurse, so why not be a travel nurse?” Te’A says.
“I’m very proud of Te’A,” Raytoyia says, “and I’m so happy she’s been able to do many of the things that she loves and wants to do.”