Crippling costs and delays: 36 per cent of Kenyan children die waiting for heart surgery
Every year, thousands of Kenyan children are born with congenital heart disease —defects in the heart's structure that are often treatable with early intervention
What you need to know:
- CHD surgeries are among the most expensive paediatric procedures in Kenya, costing anywhere from Sh300,000 to over a Sh1 million.
- For families already struggling with transport, accommodation and loss of income, these costs are often insurmountable.
Every year, thousands of Kenyan children are born with congenital heart disease (CHD)—defects in the heart's structure that are often treatable with early intervention. However, for many families, the exorbitant cost of surgery and the severe shortage of specialised facilities turn survival into a desperate race against time.
A new study conducted at Kenyatta National Hospital (KNH) exposes the devastating consequences of these barriers, highligting long waiting times, unfulfilled surgical plans, and one of the highest one-year mortality rates for CHD ever recorded in Kenya.
The research, led by paediatric cardiologists from KNH and the University of Nairobi, reviewed the records of 1,703 CHD patients admitted to KNH between 2016 and 2021. The findings paint a stark picture of how financial and infrastructural limits dictate a child's chance of survival.
While 14 per cent of patients were advised to undergo surgery and 3.8 per cent needed catheterisation, only a fraction received these life-saving procedures within a year.
Just over one-third of patients recommended for surgery underwent the procedure, with a median waiting time of nearly two months (59 days).
For catheterisation, approximately two-thirds of patients received the procedure, typically after waiting three months.
Worse conditions
Patients referred abroad faced far worse conditions: the median waiting time for surgery outside Kenya was 349 days—almost a full year—and only 13 per cent of those referred were able to undergo the operation.
The delay resulted in death for 57 patients who were deemed inoperable and counselled towards palliative care.
“The majority of patients recommended for surgery did not undergo the procedure,” said Dr Bonface Osano, a paediatric cardiologist and one of the study’s lead authors. “The lengthy time between diagnosis and intervention is primarily due to access and affordability issues.”
The study found that almost two-thirds (62.9 per cent) of patients recommended for surgery had not received it one year after their diagnosis. Many families could not afford the out-of-pocket costs of cardiac procedures, even at KNH, where fees are subsidised.
For those referred to private hospitals or for treatment overseas, the expenses were prohibitively high.
CHD surgeries are among the most expensive paediatric procedures in Kenya, costing anywhere from Sh300,000 to over a Sh1 million. For families already struggling with transport, accommodation and loss of income, these costs are often insurmountable.
“Our children are dying not because there is no treatment,” said Dr Osano, “but because help comes too late.”
The study reported that 36 per cent of patients died within a year of diagnosis.
Mortality was particularly high among children diagnosed with Tetralogy of Fallot - a congenital heart condition involving four abnormalities occurring together, including a defective septum between the ventricles and narrowing of the pulmonary artery, and accompanied by cyanosis. The children were almost twice as likely to die. Older children also faced greater risks, likely due to complications arising from late diagnosis and extended delays before surgery.
KNH remains the primary public facility for corrective heart surgery for children in Kenya. However, its capacity is limited.
Kenya has only a handful of paediatric cardiac surgeons, and operating theatre space is shared with adult cases and other emergencies. The shortage of post-surgical intensive care beds and specialised nurses further limits the number of children who can be treated.
“It’s not just the cost; it’s the waiting time. A child may be diagnosed and placed on the waiting list for surgery, but the system has its limits. By the time it is their turn, some are too ill to be operated on,” the study said.
The shortage of specialist teams affects the entire referral chain. Children diagnosed in county hospitals often experience delays in reaching KNH for evaluation, while those already on waiting lists may deteriorate due to a lack of timely reviews.
For families in remote counties, the combined challenges of distance and travel costs further limit access to care.
The study also highlighted two less visible challenges: incomplete data and poor follow-up. Many medical records lacked full documentation of interventions or outcomes.
While attempts were made to contact families by phone, many phone numbers were outdated. Researchers acknowledged that some patients may have undergone surgery in private facilities and were no longer being tracked within the KNH system.
These documentation gaps obscure the true picture of CHD outcomes nationally, making it difficult for policymakers to plan services or allocate funds effectively.
The Global Burden of Disease (GBD) Study 2021 reported that around 250,800 people died from CHD in 2021, with about 168,000 of these being under one year old. Though there has been a 52.6 per cent decrease in CHD-related deaths since 1990, there is still a higher mortality rate in low Socio-Demographic Index (SDI) regions, where there is limited surgical capacity, diagnostic delays are common and financial barriers are large.
A GBD analysis of children aged 0-14 found that global mortality from CHD dropped from 28.63 per 100,000 in 1990 to 11.06 per 100,000 in 2021. However, low-SDI regions lag far behind.
The researchers recommend systemic reforms, starting with expanding surgical capacity, training more paediatric cardiac specialists and improving referral coordination.
They also advocate the implementation of financial protection mechanisms through public insurance or dedicated government funding, to ensure that no child is denied treatment due to cost.
