Medicine

Students with sickle cell disease stay on track with help from St. Louis Children’s Hospital

Brandon Gardner is embraced by his hematologist, St. Louis children's Hospital's Dr. Monica Hulbert, tat the Cathedral Basilica following the Trinity Catholic High School graduation ceremony. At right is Gardner's mother, Yorvoll Gardner. (Photo: Chris Lee)

Brandon Gardner graduated Friday on schedule with his class from Trinity Catholic High School in north St. Louis County.

The rite of passage wasn’t always a certainty for Gardner, 18, who was born with sickle cell disease and has endured various complications including infections and chronic pain throughout childhood. In March of his junior year, Gardner fell in class and was later diagnosed with a stroke. He spent more than a month in the hospital and about six weeks out of school.

Sickle cell disease makes red blood cells hard and sticky and difficult to pass through blood vessels. The resulting lack of oxygen in the blood can lead to anemia, debilitating pain and in severe cases, strokes. For schoolchildren, the symptoms add up to a lot of absences.

More than 150 local kids with the genetic disease, which primarily affects African-Americans, participate in the Helping Youth Pursue Education, or HYPE, program at St. Louis Children’s Hospital to keep them on track at school.

“We don’t want any of our patients to be penalized because of their diagnosis,” said Aisha Johnson, the hospital program’s coordinator. “The main goal is to get our kiddos to feel more confident and excited about education, to not feel defeated by the system and to make it across the finish line.”

The HYPE program started in 2016 to connect children’s medical and educational needs specific to sickle cell disease. Johnson, who has a master’s degree in education, serves as a liaison between the hospital and the children’s schools…

…St. Louis Children’s has a classroom with certified teachers for hospitalized patients. When sickle cell patients are too medicated in the hospital to focus on school work, Johnson can help find alternatives. For Gardner, that meant an extra month of summer tutoring sessions last June to stay on schedule for graduation.

“He has a tremendous spirit,” said Beth Lappe, Trinity Catholic’s learning consultant who tutored Gardner. “In a lot of ways he was my teacher.”

Up to 30 percent of kids with sickle cell disease have strokes of varying severity before they graduate high school, said Dr. Monica Hulbert, director of the sickle cell disease program at St. Louis Children’s.

Even if they don’t experience a stroke, the disease can have cognitive effects including trouble with memory and attention.

“In the educational environment, that can manifest as seeming like they’re daydreaming,” Hulbert said. “It can show up as not catching on to new information as quickly as the teachers think the children should.”

Read more.