Being a Mom with Sickle Cell Disease

Written by: Halimat Olaniyan

Versetta Brown discusses family planning, pregnancy, and parenting while living with sickle cell disease type SS.

Versetta grew up terrified of the idea of having children because of what she knew about how pregnancy could negatively affect her sickle cell disease. Initially, it kept her from pursuing family planning any further. Like many individuals living with sickle cell disease, she was told pregnancy could trigger all kinds of pain crises and make the current state of her disease worse.

Pregnancy 

Growing up, her parents discussed with her the importance of knowing her partner’s genotype, to ensure her future children would not have sickle cell disease. Versetta and her partner tested and found that he did not have sickle cell disease or sickle cell trait.  

To Versetta’s surprise, her pregnancy was rather smooth and pain-free up until the end. “I didn’t feel anything. Until about 3 weeks before her delivery, I would have these pains from my neck to my legs, full body pains… it turned out I was having contractions but I had no idea…” Versetta found out her pregnancy was complicated by severe preeclampsia – or high blood pressure in pregnancy.

When she went into labor, she says it felt easy – it was nothing compared to a severe sickle cell pain crisis. After her c-section, Versetta met her beautiful daughter, Autumn.

Parenting 

Versetta’s daughter is her “first love” and she talks about protecting Autumn from some of the reality of Versetta’s sickle cell disease so that Autumn could fully enjoy her childhood. “Now, as she gets older, I have to transition to teaching her more about my disease so she understands why I’m just laying in bed [or] why I had all the energy yesterday but today all my cells are depleted and I’m too tired to move… because the reality is, someday she’ll have to take care of me.”

Additionally, because Versetta lives with sickle cell disease type SS, Autumn has sickle cell trait. Versetta believed that those with sickle cell trait don’t really experience sickle cell pain. This all changed with her daughter as Autumn describes pains very similar to Versetta’s.

“I’ve taken her to the doctor for it and they try to tell me it’s growing pains but it sounds like sickle cell pain… the same remedies that treat my sickle cell pain work for her too… so now I believe everyone with sickle cell trait when they say they have pain… just believe them,” Versetta explains.

Growing up, Versetta felt like a burden and overcompensated by taking care of everyone else around her. But as a mother, she understands that she has to start reprioritizing herself and putting herself first.

“I realized if I want to be around to see her [Autumn] grow up and see my grandchildren, I have to start taking care of my health,” Versetta Brown.