WHO issues first pregnancy guideline for sickle cell disease

The WHO has released its first global guideline for managing sickle cell disease (SCD) during pregnancy, aiming to reduce health risks that can be life-threatening for women and babies.

The guideline addresses a major gap in care for the 7.7 million people living with SCD globally – a number that has increased by over 40 per cent since 2000.

SCD refers to a group of inherited blood disorders where red blood cells become abnormally shaped like crescents or sickles.

These misshapen cells can block blood flow, leading to severe anaemia, painful episodes, repeated infections and medical emergencies such as strokes, sepsis or organ failure.

Dr Doris Chou is medical officer and lead author of the guideline.

Chou said: “It’s essential that women with sickle cell disease can discuss their care options early in pregnancy—or ideally before—with knowledgeable providers.

“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 optimise outcomes for the woman, her pregnancy, and her baby.”

The new guideline provides evidence-based recommendations tailored for low- and middle-income countries, where the majority of cases and deaths from the disease occur.

Sub-Saharan Africa accounts for around 80 per cent of global cases, with others found in parts of the Middle East, the Caribbean and South Asia.

With greater population movement and improved life expectancy, the sickle cell gene is becoming more widespread, increasing the need for awareness among maternity care providers.

During pregnancy, health risks from SCD increase due to greater demands on the body’s oxygen and nutrient supply.

Women with the condition are four to eleven times more likely to die from pregnancy-related causes than women without SCD.

They are also more prone to complications such as pre-eclampsia – a serious blood pressure disorder – while their babies face a higher risk of stillbirth, premature birth or low birth weight.

Dr Pascale Allotey is director for sexual and reproductive health and research at WHO and the United Nations’ Special Programme for Human Reproduction.

Allotey said:”With quality health care, women with inherited blood disorders like sickle cell disease can have safe and healthy pregnancies and births.

“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.”

The guideline includes over 20 recommendations, covering areas such as folic acid and iron supplementation (with adjustments for malaria-endemic regions), management of sickle cell crises and pain, prevention of infections and blood clots, use of prophylactic blood transfusions, and additional monitoring of both the woman and the baby’s health throughout pregnancy.

It stresses the importance of personalised and respectful care, recognising each woman’s individual needs, medical history and preferences.

The guideline also highlights the need to tackle stigma and discrimination in healthcare settings, which remains a significant barrier to care in many countries.