Every year, sickle cell disease is estimated to cause over 375, 000 deaths, according to the World Health Organization (WHO). Among them are hundreds of thousands of women with sickle cell disease face life-threatening risks during pregnancy—often without access to proper care. ALSO READ: Sickle cell anaemia: A common debilitating condition in Africa On June 19, WHO released its first-ever global guideline on the management of sickle cell disease (SCD) during pregnancy, addressing a critical and growing health challenge that can have life-threatening consequences for both women and babies. Sickle cell disease is a group of inherited blood disorders characterized by abnormally shaped red blood cells that resemble crescents or sickles. These cells can block blood flow, causing severe anaemia, episodes of severe pain, recurrent infections, as well as medical emergencies like strokes, sepsis or organ failures. ALSO READ: Management of pain in sickle cell disease Dr Gerard Mbabazi, an obstetrics and gynecology resident at Rwanda Military Referral and Teaching Hospital, told The New Times that sickle cell disease poses serious risks especially during pregnancy because the expectant mothers’ body requires high oxygen and nutrients supply for both the mother and her baby to thrive. He said: “The risks include anemia, infections, pre-eclampsia or eclampsia, higher risk of blood clots, premature birth, and miscarriage or still birth. However, with proper close monitoring and care, women with sickle cell disease can deliver healthy babies and avoid life-threatening complications.” According to WHO, women with sickle cell disease face a 4- to 11-fold higher likelihood of maternal death than those without. They are more likely to experience obstetric complications like pre-eclampsia, while their babies are at greater risk of stillbirth or being born early or small. Many pregnant and breastfeeding women cannot be sure that their needed medications are safe for them – inc. for diseases like #SickleCell - because of exclusion of these groups from clinical trials. A new global Task Force aims to accelerate ethical inclusion in research, for... https://t.co/tHGSNAKKL3 — World Health Organization (WHO) (@WHO) June 19, 2025 Pre-eclampsia is a pregnancy complication characterized by high blood pressure (hypertension) and signs of damage to another organ system, most often the kidneys, after 20 weeks of pregnancy. It can also occur following childbirth, typically within 48 hours of delivery. The complication can range in severity and may affect both the mother and the developing baby. “With quality health care, women with inherited blood disorders like sickle cell disease can have safe and healthy pregnancies and births,” said Dr Pascale Allotey, the Director for Sexual and Reproductive Health and Research at WHO and the United Nations’ Special Programme for Human Reproduction (HRP). “This new guideline aims to improve pregnancy outcomes for those affected. With sickle cell on the rise, more investment is urgently needed to expand access to evidence-based treatments during pregnancy as well as diagnosis and information about this neglected disease.” 7.7 million people living with sickle cell disease There are around 7.7 million people living with sickle cell disease worldwide – a figure that has increased by over 40% since 2000, according to WHO. As noted, the disease is most prevalent in malaria-endemic regions, particularly sub-Saharan Africa--which accounts for around 8 in 10 cases--as well as parts of the Middle East, the Caribbean, and South Asia. With population movements and improvements in life expectancy, the sickle cell gene is also becoming more widespread globally, meaning more maternity care providers need to know how to manage the disease. Dr Mbabazi said that “it is recommended” that women with sickle cell disease begin preconception counselling and antenatal care as early as possible “and attend all scheduled visits consistently.” He added: “Key management strategies include preventing crises through adequate fluid and nutrient intake, taking folic acid tabs, avoidance of triggers such as infections, cold weather, and stress, and undergoing regular blood tests, fetal monitoring and use of safe analgesics during crises.” Folic acid tablets, Dr Mbabazi explained, are prescribed as supplements “but again, there are lots of foods that contain folic acid (Vitamin B9); like dodo [amaranth], isombe [cassava leaves], beans, fruits such as avocado, papaya, oranges, bananas, and many more.” Blood transfusions may also be required to manage severe anemia or prevent complications, he said. Dr. Rachna Pande, a specialist in internal medicine, said: “Symptoms can be prevented or minimized by healthy life style. Genetic counselling during pregnancy is also helpful. Regular prenatal check up and following advice is important for someone who has sickle cell disease and becomes pregnant, because there is greater risk for having severe joints pain, weakness. Healthy life style, and good hygiene, is important in preventing infections.” Until now, according to WHO, clinical guidance for managing sickle cell disease in pregnancy has largely drawn on protocols from high-income countries. The UN health agency’s new guideline aims to provide evidence-based recommendations that are also relevant for low- and middle-income settings, where most cases and deaths from the disease occur. Accordingly, the guideline includes over 20 recommendations spanning: folic acid and iron supplementation, including adjustments for malaria-endemic areas; management of sickle cell crises and pain relief; prevention of infections and blood clots; use of prophylactic blood transfusions; and additional monitoring of the woman and the baby’s health throughout pregnancy. Critically, the guideline highlights the need for respectful, individualized care, adapted according to women’s unique needs, medical histories and preferences. It also addresses the importance of tackling stigma and discrimination within healthcare settings, which can be a major challenge for people with sickle cell disease in several countries around the world. “It’s essential that women with sickle cell disease can discuss their care options early in pregnancy—or ideally before—with knowledgeable providers,” said Dr Doris Chou, the Medical Officer and lead author of the new WHO guideline. “This supports informed decisions about any treatment options to continue or adopt, as well as agree on ways of handling potential complications, so as to optimize outcomes for the woman, her pregnancy, and her baby.” Given the complex nature of these disorders, if a pregnant woman has sickle cell disease, the WHO guideline notes the importance of involving skilled and knowledgeable personnel in her care team. These may include specialists like haemotologists as well as midwives, paediatricians and obstetrician-gynecologists who provide services for reproductive and newborn health. Sickle cell disease is a neglected health condition that remains considerably under-funded and under-researched, despite its growing prevalence worldwide. While treatment options are improving for the general population, the guideline underscores the urgent need for more research into the safety and efficacy of sickle cell disease treatments for pregnant and breastfeeding women – populations that have historically been excluded from clinical trials. Dr Mbabazi said: “With improved care and early intervention, maternal and fetal outcomes also significantly improve. However, women with sickle cell disease still require close surveillance throughout pregnancy and postpartum period to prevent morbidity and mortality.”
