Anyone affected by sickle cell disease knows it’s not just patients who need care. Families need it too. At Levine Children’s Hospital, families find powerful advocates like nurse navigator Carla Jones and social worker Kenneth Mitten.
Jones helps ensure pediatric sickle cell patients stay on track with appointments, lab tests, medications, follow-ups – everything necessary to best manage their care. But Jones is also there to support parents who just learned that their newborn has been diagnosed with a serious, lifelong disease. She’s the referral go-between who can relay clinical details from one specialist to another.
She’s also a gentle teacher to pediatric patients, explaining medical realities in terms they can understand. For example, she tells preschoolers how normal blood cells are squishy like water balloons, but that some of their cells are hard and shaped like bananas, which causes problems that need special care.
If Jones helps families navigate the medical system, Kenneth Mitten is there to help provide support beyond the walls of LCH. He helps connect families with financial and other resources. He also educates schools, workplaces and the community about how sickle cell affects health and performance. “I give patients a place to talk and the tools to cope with issues that are part and parcel of a chronic illness,” says Mitten.
Mitten says that LCH is strongly committed to supporting sickle cell families in any way possible. That’s especially important given there is little general awareness of the disease and support groups aren’t as prevalent as they are for cancer patients and other populations. Mitten says, “If I’ve heard it once from parents, I’ve heard it a hundred times: ‘No one gets what we’re going through.’”
To that end, the LCH support team connects with existing sickle cell support groups in the area. An LCH parent support group is also in the works, an effort families are excited to see come to fruition. Mitten plans to co-run the group with a parent.
Jones and Mitten acknowledge that their jobs can be difficult. But Jones describes her job as “amazing.” She says, “It’s especially gratifying to see parents realize that their children can lead normal lives and to see teens become empowered to take care of themselves.”
Mitten adds, “What's fantastic is being able to connect, to make the tiniest difference in someone’s life, something that allows them to move forward. It’s immeasurable.”
