WHO Releases New Guidelines on Managing Sickle Cell Disease in Pregnancy

By Faith Barbara N Ruhinda Updated at 1342 EAT on Friday 20 June 2025

The World Health Organization (WHO) has issued its first global guideline for managing sickle cell disease (SCD) during pregnancy, tackling a significant and increasingly urgent health challenge that poses serious risks to both mothers and their babies.

Sickle cell disease (SCD) is a group of inherited blood disorders marked by abnormally shaped red blood cells that resemble crescents or sickles. These misshapen cells can obstruct blood flow, leading to severe anemia, intense pain episodes, recurrent infections, and serious complications such as strokes, sepsis, or organ failure.

The health risks linked to sickle cell disease (SCD) increase significantly during pregnancy due to the body’s heightened need for oxygen and nutrients.

Women with SCD are 4 to 11 times more likely to die from pregnancy-related causes compared to those without the condition. They also face a higher risk of complications such as pre-eclampsia, while their babies are more likely to be stillborn, premature, or have low birth weight.

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, Director of Sexual and Reproductive Health and Research at WHO and the United Nations’ Special Programme for Human Reproduction (HRP).

The new guideline aims to improve pregnancy outcomes for individuals affected by sickle cell disease.

As the global burden of SCD continues to rise, there is an urgent need for greater investment to expand access to evidence-based treatments during pregnancy, as well as timely diagnosis and increased awareness of this often-neglected condition.

An estimated 7.7 million people worldwide are living with sickle cell disease (SCD) a number that has risen by more than 40% since 2000. SCD is responsible for over 375,000 deaths annually.

The disease is most common in malaria-endemic regions, with sub-Saharan Africa accounting for approximately 80% of global cases. It is also prevalent in parts of the Middle East, the Caribbean, and South.

Due to population movements and increased life expectancy, the sickle cell gene is becoming more widespread globally.

As a result, a growing number of maternity care providers must be equipped to manage the disease effectively. Until now, clinical guidance for managing SCD in pregnancy has largely relied on protocols developed in high-income countries, which may not always be applicable in low-resource settings.

WHO’s new guideline provides evidence-based recommendations tailored to the realities of low- and middle-income countries, where the majority of sickle cell cases and deaths occur.

The guideline includes over 20 recommendations covering key areas such as: folic acid and iron supplementation (with adjustments for malaria-endemic regions); management of sickle cell crises and pain relief; prevention of infections and blood clots; use of prophylactic blood transfusions; and enhanced monitoring of both maternal and fetal health throughout pregnancy.

Critically, the guideline emphasizes the importance of respectful, individualized care that is tailored to each woman’s unique needs, medical history, and preferences.

It also underscores the need to address stigma and discrimination within healthcare settings persistent challenges faced by people with sickle cell disease in many parts of the world.

It’s essential that women with sickle cell disease have the opportunity to discuss their care options early in pregnancy or ideally even before with knowledgeable and supportive healthcare providers,” said Dr. Doris Chou, Medical Officer and lead author of the guideline.

This approach supports informed decision-making about which treatments to continue or begin, and helps establish plans for managing potential complications ultimately aiming to achieve the best possible outcomes for the woman, her pregnancy, and her baby.

Given the complex nature of sickle cell disorders, the guideline stresses the importance of involving skilled, knowledgeable healthcare professionals in the care of pregnant women with SCD.

This multidisciplinary team may include specialists such as haematologists, as well as midwives, paediatricians, and obstetrician-gynaecologists experienced in reproductive and newborn health.

Despite its growing global prevalence, SCD remains a neglected condition under-funded and under-researched. While treatment options are improving for the general population, the guideline highlights the urgent need for more research into the safety and effectiveness of SCD treatments during pregnancy and breastfeeding—populations that have long been excluded from clinical trials.

Invest or Donate towards HICGI New Agency Global Media Establishment – Watch video here