The agonising pain episodes, severe anaemia and weeks of hospitalisation during her first pregnancy were never far from Aminata Coulibaly's thoughts.
Living with sickle cell disease, the 28-year-old from Côte d'Ivoire knew the risks all too well when she discovered she was expecting again.
"I was afraid I wouldn't survive to see my baby," she tells TRT Afrika.
Aminata isn't alone in her fear. Thousands of women living with sickle cell disease across Africa and beyond go through the trauma of not knowing if they will survive pregnancy.
Based on global data, women with sickle cell disease face 4 to 11 times higher odds of childbirth mortality than those without the condition. Their babies are also at risk of being stillborn, premature, or of low birth weight.
On June 19, the World Health Organisation (WHO) released the first set of global guidelines to improve pregnancy care for women like Aminata, offering evidence-based recommendations to ensure safer births.
Deadly gap
Sickle cell disease is characterised by abnormal, crescent-shaped red blood cells that clog blood vessels, leading to potentially fatal complications. These risks multiply during pregnancy.
The condition affects an estimated 7.7 million people worldwide, with 80% of cases in sub-Saharan Africa, according to the new guidelines.
Clinical guidance has long been fragmented, relying on protocols from high-income countries that may not be feasible in low-resource settings.
"The new guidelines are a game-changer," says Dr Pascale Allotey, director for sexual and reproductive health and research at WHO.
"With proper care, women with sickle cell disease can have healthy pregnancies. But we need urgent investment to make these treatments accessible everywhere."
Heartbreaking choices
For many women, the risks force agonising decisions.
"I was told having children could kill me," Fatoumata Diallo, a Senegalese woman diagnosed with the disease during childhood, tells TRT Afrika.
"When I got married, my husband and I had to decide: Do we take the risk or should I avoid pregnancy altogether?"
After consulting specialists, she had two children, although both pregnancies required intensive medical supervision.
"I was lucky. Many women don't have that option," the 32-year-old recounts.
The new WHO guidelines aim to make management of sickle cell disease during pregnancy with clear, adaptable recommendations, including folic acid and iron supplementation that is adjusted for malaria-endemic regions.
Management of pain associated with sickle cell disease is another crucial aspect.
The guidelines also outline preventive measures against infections and blood clots, recommend prophylactic blood transfusions in high-risk cases, and emphasise enhanced monitoring for both mother and baby throughout pregnancy.
Customised care
While the guidelines mark a significant step forward, sickle cell disease remains under-researched, particularly its manifestations during pregnancy. Healthcare experts say efforts to combat the condition are also underfunded.
Many treatments lack safety data for expectant mothers, who have historically been excluded from clinical trials.
"This is just the beginning," Dr Doris Chou, WHO medical officer and lead author of the guidelines, says of the new initiative.
"Women with sickle cell disease need early, informed discussions with their healthcare providers to make the best decisions for their health and their babies."
These guidelines are the first in a WHO series addressing noncommunicable diseases in pregnancy, with future publications set to cover diabetes, cardiovascular conditions, and mental health.
As chronic diseases increasingly contribute to maternal mortality, the need for global action has never been clearer. For millions of women with sickle cell disease, these guidelines could mean the difference between life and death, and the chance to hold their children in their arms.
In Aminata’s case, specialised care during her second pregnancy ensured she gave birth to a healthy baby girl.
"I want every woman with sickle cell to know that motherhood doesn't have to be a death sentence," she says. "With the right care, we can survive and thrive."
