Long Waits and High Deaths: Kenya’s Congenital Heart Disease Care Gap Laid Bare

Every year, thousands of babies are born in Kenya with hearts that did not form correctly. Congenital heart disease, the umbrella term for structural defects of the heart present at birth, affects an estimated 8 to 15 babies for every 1,000 live births worldwide, making it the most common birth defect of clinical significance. For most of these children, timely surgery or catheter-based intervention is the difference between a normal life and progressive, often fatal, cardiac deterioration. A new retrospective study from Kenyatta National Hospital, the country’s largest referral facility, has now quantified just how far many Kenyan children fall short of that standard, and the numbers are stark.

The research, led by Bonface Ombaba Osano of the Department of Paediatrics and Child Health at the University of Nairobi together with colleagues from Kenyatta National Hospital and Moi Teaching and Referral Hospital, examined the records of 1,703 patients admitted with congenital heart disease between January 2016 and December 2021. The team collected data using the REDCap electronic data capture platform and performed their analyses in R, version 4.3.0. Their goal was threefold: to establish one-year outcomes after diagnosis, to measure the waiting time from diagnosis to intervention, and to identify the factors associated with death within the first year after diagnosis.

The headline finding is sobering. One year after diagnosis, 36.1 percent of the patients in the cohort had died. That figure means more than one in three children diagnosed with a congenital heart defect at the national referral hospital did not survive their first post-diagnostic year. The majority of patients at the time of diagnosis were infants under one year of age, who made up 53.6 percent of the cohort, and 40.8 percent of the patients were male. The predominance of very young children reflects both the natural history of severe defects, which tend to present early with heart failure or cyanosis, and the referral patterns that funnel the sickest babies to Kenyatta National Hospital.

Equally revealing is how few children actually received the treatments their diagnoses called for. Of the patients for whom surgical intervention was recommended, only 69, or 37 percent, underwent the recommended surgery within one year. The median waiting time from diagnosis to surgery was 59 days, with an interquartile range stretching from 10 to 208 days, meaning a substantial minority of children waited the better part of a year or more for an operation. For catheter-based procedures, the picture was somewhat better: 44 patients, or 67 percent of those recommended for catheterization, received it within a year, with a median waiting time of 95 days and an interquartile range of 13.5 to 188.8 days.

The most dramatic delays were reserved for children whose treatment required travel abroad. Patients whose interventions took place outside Kenya waited a median of 349 days for their procedure, with observed times ranging from roughly 11 days to more than 700 days. Because Kenya’s domestic surgical capacity is limited, many families depend on medical missions, charitable surgical programs, and government-sponsored overseas referrals. Each of these pathways introduces logistical bottlenecks, from fundraising and travel documentation to the scheduling of visiting surgical teams, and the data show that these bottlenecks translate directly into months of waiting for children whose hearts cannot afford the delay.

When the researchers looked for factors associated with one-year mortality, two stood out. Older children were more likely to die within the year after diagnosis, a counterintuitive finding that likely reflects late presentation: children who reach the health system at an older age often carry advanced disease, including pulmonary vascular damage from long-standing untreated shunts, irreversible heart failure, or severe cyanosis that has already taken its toll on growth and organ function. Children with Tetralogy of Fallot, a complex four-part defect combining a ventricular septal defect, an overriding aorta, pulmonary stenosis, and right ventricular hypertrophy, were also more likely to die. Tetralogy of Fallot requires corrective surgery in infancy or early childhood, and delayed repair leaves children exposed to cyanotic spells, polycythemia, and progressive right heart strain.

The study’s methods deserve attention because they illuminate both the strengths and the limits of retrospective record-based research in resource-constrained settings. By reviewing six years of admission records, the team assembled one of the larger cohorts of congenital heart disease patients described in East Africa, and their use of standardized data capture and modern statistical tooling brings the analysis in line with international practice. Yet the authors themselves flag a critical weakness: documentation for congenital heart disease patients at Kenyatta National Hospital contains many gaps. Missing entries on diagnosis codes, intervention status, and follow-up outcomes constrain what can be measured, and the true scale of unmet surgical need may be even larger than the recorded data suggest.

The clinical logic behind the urgency is straightforward. Congenital heart defects are mechanical problems, and most correctable lesions, including ventricular septal defects, atrial septal defects, patent ductus arteriosus, and Tetralogy of Fallot, respond well to timely repair with excellent long-term survival in high-resource settings. The window for repair, however, is not unlimited. Untreated shunts can cause irreversible pulmonary hypertension that eventually renders a child inoperable, and cyanotic lesions impose cumulative damage on the brain and other organs. Every month of waiting therefore carries a quantifiable risk, both of death before surgery and of arriving at surgery too late for a full recovery. The 36.1 percent one-year mortality documented in this cohort must be read against that backdrop.

The authors conclude that few children with congenital heart disease at Kenyatta National Hospital receive the recommended interventions, that waiting times from diagnosis to intervention are long, and that mortality remains high. Their prescription is direct: shorten the interval between diagnosis and intervention, and improve the documentation of these patients’ care so that future audits can measure progress. The study was approved by the Kenyatta National Hospital–University of Nairobi Ethics and Research Committee, with a waiver of individual consent for the retrospective record review and additional safeguards, including referral pathways for families needing psychosocial support, when phone interviews were used to fill gaps in the records.

The wider significance of the work lies in what it says about pediatric cardiac care in low- and middle-income countries. High-income health systems routinely repair congenital heart defects within weeks of diagnosis, and survival to adulthood for treated patients now exceeds 90 percent. This Kenyan cohort shows how that standard collapses when surgical capacity, catheterization infrastructure, and referral pathways are stretched thin. Each data point in the study, from the 37 percent of recommended surgeries completed within a year to the 349-day median wait for overseas intervention, represents a child whose heart was losing a race against time. Turning these findings into policy, expanding local surgical capacity, streamlining referral for overseas treatment, and building reliable registries for congenital heart disease, is the task the study now places squarely before Kenya’s health system.

Subject of Research: One-year outcomes and intervention waiting times for children with congenital heart disease at a Kenyan national referral hospital

Article Title: One-year outcomes and intervention waiting time of patients admitted with congenital heart disease at Kenyatta National Hospital, Kenya

Article References: Osano, B. O., Kimonge, D., Kimani, E., Chesire, E., Gachara, N., Yuko-Jowi, C., Aluvaala, J., & Were, F. (2026). One-year outcomes and intervention waiting time of patients admitted with congenital heart disease at Kenyatta National Hospital, Kenya. BMC Pediatrics. https://doi.org/10.1186/s12887-026-07651-3

Image Credits: AI Generated

DOI: 10.1186/s12887-026-07651-3

Keywords: congenital heart disease, Kenya, pediatric cardiology, Kenyatta National Hospital, cardiac surgery, catheterization, Tetralogy of Fallot, mortality, waiting time, retrospective study, health systems, East Africa