New ECHILD Publication: Childhood outcomes in children with Hirschsprung disease by Katie Harron

A new study reveals long‑term health and education challenges for children with Hirschsprung disease.

New research using the ECHILD database shows that children born with Hirschsprung disease face significantly higher rates of hospital admissions, surgery and special educational needs throughout childhood.

A new population‑level study using the Education and Child Health Insights from Linked Data (ECHILD) database has provided the most comprehensive picture to date of the long‑term health and educational experiences of children with Hirschsprung disease (HSCR) in England.

Hirschsprung disease is a rare congenital condition affecting the bowel that is usually diagnosed and treated with surgery in infancy. While early surgery is often life‑saving, much less has been known about children’s health, development and educational needs as they grow older.

Using linked national health and education data covering more than 11 million children born in England between 2002 and 2020, the ECHILD research team examined hospital admissions, surgical procedures, mortality and the need for *Special Educational Needs and Disability (SEND) support among children with and without HSCR.

Frequent hospital admissions and ongoing surgery

The study found that children with HSCR experience much higher rates of hospital readmission throughout childhood. By the age of four, 95% of children with HSCR had been admitted to hospital at least once after their birth admission, compared with 40% of children without the condition.

Hospital admissions remained higher for children with HSCR at all ages studied, up to 14 years. Common reasons for admission included constipation, gut infections, abdominal pain, nausea and vomiting, highlighting ongoing digestive problems despite corrective surgery.

Children with HSCR also underwent far more surgical procedures. Between birth and age four, over 80% had two or more operations, compared with just 3% of children without HSCR. Although surgery becomes less frequent with age, differences persisted into later childhood and adolescence.

Higher mortality in early childhood

While overall survival for HSCR is high, the study showed that mortality rates were significantly higher, particularly in early childhood. By age four, mortality among children with HSCR was over six times higher than among their peers.

Importantly, elevated risks remained even after accounting for other serious conditions commonly associated with HSCR, such as Down syndrome or major heart anomalies.

Greater need for educational support

For the first time at a national level, the study also examined children’s educational needs. By Year 1 of primary school (age six), 44% of children with HSCR had recorded SEND, compared with 18% of children without HSCR.

Even when children with chromosomal abnormalities were excluded, those with HSCR were still around one‑third more likely to require SEND support. This suggests that children’s educational needs may be linked not only to associated conditions, but also to the long‑term impact of HSCR itself, including frequent hospitalisations and ongoing health challenges.

The researchers also found that the association between HSCR and SEND was particularly strong among girls, highlighting the need for awareness that HSCR can affect children differently.

What this means for care and policy

The findings underline that early surgery alone is not enough to address the long‑term needs of children with Hirschsprung disease. Ongoing bowel dysfunction, repeated hospital admissions and educational support needs can affect children and families well into adolescence.

The researchers emphasise the importance of coordinated, long‑term multidisciplinary care, bringing together paediatric surgery, gastroenterology, primary care, schools and mental health services. Better planning and targeted support could help improve quality of life, educational participation and long‑term outcomes.

By linking health and education data nationally, the ECHILD database makes it possible to understand how rare conditions such as HSCR affect children’s lives beyond the hospital setting — helping clinicians, educators and policymakers plan services that reflect children’s real experiences.

About the study

This research used anonymised, linked administrative data from ECHILD, which combines Hospital Episode Statistics, National Pupil Database records and ONS mortality data for nearly all children in England.

ECHILD data are available to accredited researchers through secure access.

📄 Read the full open‑access article:

Long‑term health and educational outcomes for children with Hirschsprung disease in England

[DOI: 10.1136/flgastro-2025-103478]