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What is sickle cell disease?

Sickle cell disease is a genetically inherited blood disorder that about 1 in every 13 Black or African-American babies are born with according to the CDC. Individuals with sickle cell produce abnormal hemoglobin called sickle hemoglobin. When red blood cells receive limited amounts of oxygen, they become sickle shaped. If the blood cells are unable to carry oxygen to the body, the sickle shaped blood cells begin to cluster in those areas causing what is known as a pain crisis.

Being pregnant with sickle cell can come with a host of potential complications for both mom and baby. For a mom, that can include premature labor, poor blood circulation to the placenta, pre-eclampsia, gestational diabetes, acute pain crisis and leg ulcers. The subsequent impact to the baby can include low birth weight, developmental delays, chronic conditions, and being born of below average length. (Jain, 2019). Care for sickle cell patients has made significant progress over the years to increase life expectancy and improve quality of life. More readily available vaccinations, antibiotics and the most prescribed prescription drug, Hydroxyurea. Hydroxyurea increases the amount of fetal hemoglobin in the body. The more fetal hemoglobin there is, the greater the capacity to produce healthier red blood cells to carry oxygen throughout the body. Thus, reducing the number of pain crises. (Jain, 2019)

While medical advancements continue to expand, these advancements can impact a postpartum sickle cell mom’s opportunity to breastfeed. With very limited studies that explore the interaction between hydroxyurea and breastmilk, there is a 1987 case report that discusses the likelihood of transmission of hydroxyurea into breastmilk. The study enrolled 16 lactating moms. Hydroxyurea was detected in the breast milk of 11 women within 1-2 hours after taking the medication. The concentration became smaller after 12 hours and nonexistent after 24 hours. Despite rates of transmission to babies via breastfeeding being somewhat low in quantity, it is advised that moms with sickle cell wait at least three hours after taking the medication to breastfeed and/ or pump. (Ware E. R. & Dong, 2020). Black postpartum sickle cell moms should not be deterred from breastfeeding but should be made aware of the proposed waiting period for breastfeeding and pumping.

 

How did sickle cell impact my life?

From an early age, I understood the impact intersectional identity has on the experiences of Black women. I am the daughter of Deborah Yvette (Aaron) Adekola, a college educated Black woman who navigated systems and life while living with a chronic illness, sickle cell ss. My mother was one of nine children and the only child diagnosed with Sickle Cell disease. During a time when sickle cell was minimally researched, my mom was told two things: she would not have a life expectancy greater than age 18, and children were not an option for someone with her health condition. However, because of her resiliency, familial support, and self-education regarding her health, she defeated the odds by living a full life to age 62. Unfortunately, she succumbed to the disease on June 18, 2019. Over the course of my mother’s life, her relayed experiences during labor and delivery remain at the forefront of my reflections of her. With each of her three pregnancies, her care teams made her feel dismissed and overlooked. Each time, my father was asked to sign a DNR (Do Not Resuscitate) form, and each time, my dad refused.  Fast forward 30 years to my own initial experience navigating prenatal care as a college educated Black woman living with Sickle Cell SC. I first learned of my Sickle Cell SC diagnosis during my genetic counseling screening appointment. Following my emotional response, the provider shifted her communication to my husband without further acknowledging me. I was then given a thick packet with a grand list of possible pregnancy complications and no additional explanation(s). The commonality in these experiences—my mother’s and my own—is that we were often dismissed as patients, encountered racism in the care we received, and received inadequate care from providers who lacked comprehensive education about sickle cell.

Breastfeeding was not something I actively witnessed often amongst women in my family. It does not mean it didn’t happen; it was just not openly done openly. I can recall my mom expressing her desire to breastfeed my middle sister and I, but due to a prolonged sickle cell crisis post birth, she was not afforded the opportunity because of requiring a one to three month hospital stay. It was when my youngest sister was born, she felt she could at least try. She was determined because she knew the benefits of liquid gold. My mom was able to breastfeed for about a month. Little did my mom know that her determination is what fueled my desire to breastfeed my own babies. Despite having sickle cell SC, I did not face any complications during pregnancy and postpartum. With the  education and support of our local African American Breastfeeding Alliance, I was able to successfully breastfeed my first baby for nine months. However, with my second baby, I was only able to breastfeed for 3 months due to surgery and the nexplanon LARC method of birth control. My desire to advocate during my prenatal care and breastfeeding journey came from the experiences my mother had. She was determined to be a mom and to nurture her babies the best way possible. Deborah Yvette (Aaron) Adekola truly defied so many odds. She is a warrior like so many living with sickle cell. In our eyes, she won the race. To honor my mom, my sisters and I continue to spread sickle cell awareness. My dad, Dr. Abel Adekola plans to continue her legacy and honor our mom, his life partner for close to four decades with the building of a sickle cell clinic in Nigeria. ​​​​​​


Adrian Jones is a MPH candidate in community health sciences and a MPH policy intern at The National Birth Equity Collaborative.

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