Nurse navigators help sickle cell disease patients connect to care

To receive a diagnosis of sickle cell disease (SCD) is to begin a long, often overwhelming journey of care. Fortunately for children at Riley, there is a special team of nurse navigators helping them and their families manage.

"We've actually had patients and families tell us that our nurse navigators are one of the biggest reasons why they stay engaged in care because they feel like they are people they can trust, and feel like they are people that really care about who they are," Dr. Seethal Jacob, director of the Comprehensive Pediatric Sickle Cell Program at Riley Hospital, said.

SCD is an inherited blood disorder meaning the parents must carry either the trait or the disease. It is detected during a baby's newborn screening.

"Those sickle cells can clump together and cause painful episodes, they can cause strokes, they can affect your bones, muscles, your heart, kidneys, so anywhere they blood travels you can have a vaso-occlusive episode is what we call them," Brenda White, nurse navigator, explained.

The nurse navigators on the sickle cell team help our patients with "any and everything."

"We do a lot of the coordination behind the scenes, surgery planning, phone triaging; we fill out all their paperwork, FMLA, disability paperwork," White explained. "I love that the patients can look at me and I look like them. Representation matters."

Nurse Navigator Sharla Jones said it is important to her team that they teach Riley's young patients to advocate for themselves.

"A lot of people get a misconception of their pain. They feel like when they say they're in pain that they're not because they may not look like it," Jones said. "So, as navigators, like I said, we come alongside them. So we teach people, we teach our children, to speak for themselves and advocate for themselves as well."

Dr. Jacob said patients diagnosed with SCD can be Riley patients for decades, often receiving care from our hospital until they are 22 years old. Nurse Navigator Erica Starks is grateful to walk alongside them.

"When you get that thank you and it's not just one thank you, it's multiple thank yous, and you get that gratitude from the family, that makes me feel good about what I'm doing," Starks said. "It makes me feel like I'm doing what I'm supposed to do."