Sickle Cell Disease

For the first few weeks of Tiana Sharp’s life, everything seemed ordinary. But then came a diagnosis the family never expected. 

A routine newborn visit to the pediatrician suggested Tiana had sickle cell disease. "I just didn't believe it," says her mother, Tiffani Moore. "I didn't realize I had the trait. Her brothers don't have the trait or the disease, so when she was diagnosed, it came as quite a shock."

Soon after the diagnosis, Tiana was referred to Children's of Alabama, where the family began meeting with specialists when she was just two months old. Those early visits gave the family more than medical care—they also came with the knowledge and confidence to care for Tiana. “They broke down everything about sickle cell," Tiffani explains. "We watched educational videos, and they gave us information and explained what to expect." Since Tiana was 2, her care has been led by pediatric sickle cell provider Dr. Brandi Pernell, who has helped guide the family through each stage of the disease.

To help protect Tiana from infection, doctors started her on a daily dose of penicillin shortly after she was diagnosed, and she follows a more aggressive vaccine schedule to provide her further protection from spreadable conditions. For the first several months, Tiana did well. But around six months old, she developed swelling in her hands and feet—one of the earliest signs of sickle cell disease. By age two, she experienced her first severe pain crisis, marking the beginning of more frequent complications.

As Tiana grew older, so did the challenges. Pain crises became more common, along with stomach issues, acid reflux and recurring fevers. She developed acute chest syndrome, a serious lung complication of sickle cell disease that led to multiple hospitalizations. At times, what started as an ordinary cold quickly became something much more serious.

When Tiana was about two years old, her blood counts dropped, requiring her first blood transfusion. As she entered school and was exposed to more illnesses, managing her condition became even more complex. One of the family's most frightening moments came during kindergarten. Tiana developed a high fever, began having seizures, and temporarily didn't recognize her mother or know where she was. “It was very scary,” Tiffani says. “Tiana spent about a month in the hospital recovering.”

Over the years, sickle cell disease has affected more than just Tiana's blood. Reduced blood flow damaged her hip joint, leading to persistent back pain, a limp and ultimately surgery and physical therapy. She also underwent surgery to correct eye muscle problems associated with the disease and has received care from multiple specialists, including neurology for migraines.

As her treatments became more frequent, another challenge emerged: Years of IV medications and blood draws caused Tiana's veins to become increasingly difficult to access. So in 2021, doctors placed a port to make her monthly transfusions easier and more comfortable. 

Despite the regular treatments, Tiana continues to focus on being a 12-year-old. She enjoys drawing, spending time with friends and other activities. Hospital stays have become part of life, but the team at Children's has worked to make those days a little brighter. “When Tiana feels well enough, she joins activities outside her room,” Tiffani says, “but on days she can't, Child Life specialists bring the fun to her, whether it's painting supplies, stencils, or Legos to help pass the time.”

Tiana’s journey with sickle cell hasn't been easy, but through it all, Tiffani says she has never felt like her family was facing it alone. "The care has been great," Tiffani says. "We're so thankful for everyone at Children's. They've been there for us every step of the way, and I honestly don't know where we'd be without them."