Research lab seeks to meet unexpected challenges of sickle cell disease and reproductive health

Sickle cell disease (SCD), an inherited blood disorder passed down through genes, shows up significantly more often in Black populations. In people with SCD, normal, rounded red blood cells change into damaged sickle-shaped ones that cause cells to die early, get stuck and clog blood flow, resulting in periodic episodes of extreme pain.

Black women who already face marginalization in some health care settings can experience even more disparities when navigating SCD and reproductive health.

SCD paints a complex pain landscape ripe with menstruation-related pain, pregnancy-related crises and other lifelong issues like infection, stroke and even organ failure. Black women are three to four times more likely to experience maternal death due to prenatal complications. Women with sickle cell disease are six to 10 times more likely to die from reproductive challenges.

Until recently, there’s been little study and understanding of SCD and reproductive health, but The Ohio State University Sickle Cell Women and Girls (SWAG) Research Lab is hoping to reshape understanding and management.

Pregnant patients with sickle cell disease face unexpected challenges

One woman enrolled in a former study within the SWAG Lab says SCD multiplied the issues she experienced in pregnancy, with uterine contractions and blood-flow blockage leading to ongoing pain that was worse than labor pain.

“I have a strike against me as a Black person, another strike as a woman,” she says. “And then, sickle cell and the burden and mistreatment during labor and delivery.”

These burdens can take many forms – being labeled a high-risk liability, having reduced access to specialty care, and navigating health systems or care providers unequipped to care for pregnant patients with SCD. While contractions led to her baby’s birth, SCD continued delivering pain and threatening damage to her tissues and organs.

This patient was far from alone in this experience, says Shameka Thomas, PhD, MA, founder of the SWAG Lab.

“Those who are pregnant with SCD often experience pre-term labor, the need for blood transfusions, and pregnancy loss.”

Creating better experiences for pregnant patients with SCD

Dr. Thomas hopes to expand awareness of this population in the medical community and create an integrated approach for care that fosters more awareness of the serious realities on reproductive health.

“We need to focus on the patient’s experience, because it reiterates that their experiences of delayed menstrual cycles, preterm labor, low birth weight, gestational diabetes and even maternal and infant death play a part in the improvement of disease management altogether,” says Dr. Thomas, an assistant professor and Provost Scholar at The Ohio State University College of Medicine. “I want our efforts to show that just because you live with sickle cell doesn’t mean you’re defined by it.”

Sickle cell and reproductive experiences drive research curiosity

Developing deeper insight on women navigating SCD and reproductive health goes beyond just understanding symptoms and Black women’s reproductive struggles. Dr. Thomas says it requires inquiry and curiosity to deliver effective treatments and relief.

“Curiosity helps me push back against dim statistics showing Black pregnant women are more likely to die from prenatal complications,” Dr. Thomas says.

Dr. Thomas is pushing to translate her research findings into action and wellness-driven care. In her SWAG Research Lab, one research study examines noninvasive prenatal testing for SCD disease screening. It involves 45 women and adolescent girls and gives them access to reproductive and maternal health resources and ongoing support. It also helps clinicians navigate the complicated overlap between genetic conditions like SCD and caring for patients throughout the prenatal and postnatal periods.

“SWAG’s guiding premise is to give participants the chance to share what it’s like for them to live with SCD day to day,” Dr. Thomas says. “And it gives providers the chance to understand SCD lived experiences beyond the repercussions of their symptoms.”

Managing sickle cell disease pain and reproductive health, reducing stigma

Sherraine Della-Moretta, MD, was influenced by her own firsthand experience with an inherited blood disorder in how she addresses and helps patients manage pain. The compassionate care she received from a hematologist inspired her to pursue hematology and research the impact of SCD on women’s health at The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute.

“When a SCD patient has pain, I immediately address management, pain relief, fluid intake and even possible blood transfusions,” Dr. Della-Moretta says. “The relationship between menstruation-induced pain and hormonal contraceptives is significant and impacts the rate of pain acute care they seek, highlighting an important potential target for addressing acute pain rates in women with SCD.”

Centering care coordination for sickle cell disease

Another SWAG patient’s experience illustrates additional areas that need addressed: the limited understanding of SCD in general and the limited understanding of maternal and child health in the field of genetics.

While pregnant, she received care from a physician with reported SCD knowledge, but when she asked what she should do differently than a woman without SCD, the provider had no insight. She says all she got were more appointments and increased symptom monitoring. This illustrates the need for the genetic, obstetrics and general medical fields to speak to one another and embrace the ways personalized care can affect patients’ experiences.

“Centering Black women’s reproductive health narratives – those with and without genetic conditions – requires including their experiences so we can develop deeper understanding and respect for the reproductive autonomy of all women,” Dr. Thomas says.