A new World Heart Federation report reveals widening global inequalities in congenital heart disease care, leaving low-income nations to carry the heaviest burden.
The report says congenital heart disease (CHD) is among the most common birth defects globally, affecting between 1.4% and 2.3% of children worldwide.
According to the report, about 2.3 million children were born with congenital heart disease in 2023, while an estimated 16 million people were living with the condition globally, compared to 11.8 million three decades ago.
The report says although survival rates have improved because of advances in diagnosis and treatment, major inequalities remain in access to care, particularly in low-income countries.
“Countries in the low-income region have an age-standardised mortality rate that is four times higher than those in the high-income region,” it says.
It says paediatric heart programmes and trained professionals specialising in CHD care are largely concentrated in select major cities in many low- and middle-income countries, while “in most of Africa and many parts of Asia and Latin America, there are no institutions with the capability for infant and newborn heart surgery”.
WHAT IS CHD?
CHD refers to structural abnormalities of the heart and blood vessels present at birth.
The report explains these defects vary in severity, ranging from minor defects that may resolve on their own to critical conditions requiring surgery within days or weeks of birth.
It highlights the story of Namibian-born Martha Shiimi (33), who has congenital heart disease, to illustrate the long-term challenges faced by patients in countries with limited specialised cardiac services.
Shiimi was born with a complex congenital heart defect at a time when Namibia did not have the medical services needed to treat her condition.
“For Martha to survive, they had to take her 800km across the border to South Africa, with assistance from the Namibian government, for surgery,” the report states.
“For her parents, it was a desperate trip to save their baby’s life.”
The report says Shiimi initially believed the surgery had resolved her condition, allowing her to grow up like any other child.
However, at the age of 12, symptoms returned when her heart valve began leaking.
“Suddenly hospital visits, medication and medical restrictions were back in her life. That was when she realised she was different,” the report says.
As an adult, Shiimi reportedly travelled hundreds of kilometres for medical appointments, waited months for surgical procedures, and used her own savings to pay for treatment abroad when services were unavailable in Namibia.
The report says women with congenital heart disease face additional challenges related to pregnancy and reproductive health.
“Martha often wonders whether her heart could cope, and whether she could give a child the care they deserve, while balancing care for herself,” the report states.
Today, Shiimi works in finance and leads a patient support group in Namibia aimed at supporting families and young people affected by congenital heart disease.
“I wanted to create a community so that babies growing up would have people they can look up to,” she says in the report.
EMOTIONAL BURDEN
The report also details the emotional and psychological burden carried by many CHD patients.
It says studies indicate that between 30% and 50% of children with CHD are diagnosed with neurodevelopmental or mental health conditions, including difficulties with learning, attention, social functioning and emotional well-being.
Psychological trauma and post-traumatic stress disorder are also increasingly recognised among both patients and caregivers because of repeated hospitalisation, surgery and lifelong medical monitoring.
The federation’s report warns that cultural misconceptions and stigma further worsen the burden faced by patients and families in many low- and middle-income countries.
“Cultural beliefs and misconceptions such as blaming mothers for their child’s condition, social exclusion, discrimination, or bullying intensify the burden for patients and their families.”
The report adds that stigma can lead families to hide the condition, skip follow-up care and isolate affected children from their communities.
Globally, CHD remains a major contributor to infant death.
According to the report, congenital heart disease was among the leading causes of neonatal and infant deaths between 1990 and 2023.
It says infant mortality associated with CHD has declined by 32.7% globally since 1990. However, mortality rates remain significantly higher in poorer regions.
In 2023, the global age-standardised CHD mortality rate stood at 4.7 deaths per 100 000 people, while mortality levels in low-income countries remained four times higher than those recorded in high-income countries.
The federation calls for governments to urgently strengthen national health systems to improve congenital heart disease care.
