Health and education outcomes for children born with gastroschisis

This study is being led by Prof Katie Harron (UCL), with Dr Arun Kelay and Mr Paolo de Coppi (Great Ormond Street Hospital). The study started in 2026 and aims to finish in 2027.

‍This project was reviewed and approved through ECHILD's data access process. Learn how ECHILD data is kept safe.‍

  • We want to understand the health needs of children born with Gastroschisis, and how they progress through school as they grow up.

  • Gastroschisis is a rare condition where a baby’s intestines develop outside the body. It affects around 1 in 3,000 births. Developments in surgical techniques have recently led to the first child in the UK undergoing surgery to treat the condition while still in the womb. Better information about the long-term consequences of gastroschisis could help inform families and clinicians about the potential benefits and risks of such surgery.

  • We will use health information from NHS hospitals and education information collected by schools to understand how children with gastroschisis are affected as they grow up.

Find out more

  • Why does this matter?

    Gastroschisis is a serious condition that some babies are born with. It happens when a baby’s intestines develop outside of their body. The condition is usually treated with surgery shortly after birth. While most babies with gastroschisis go on to make a full recovery and live health lives, some children can experience ongoing symptoms and problems with feeding or digestion.

    What do we want to find out?

    Developments in surgical techniques have recently led to the first child in the UK undergoing surgery to treat the condition while still in the womb. However, it is unclear which babies would most benefit from this type of surgery. We therefore aimed to better describe long-term outcomes for children with gastroschisis, including how frequently they access hospital services during childhood, and how they progress through school.

    What we will do

    We will use health information collected by NHS hospitals and education information collected by schools to understand how children with gastroschisis are affected as they grow up. The information collected by hospitals tells us about how often children with gastroschisis attend hospital or have additional procedures. The information collected by schools tells us about how long children have been absent from school, how well they do in exams, and whether they are provided with extra support.

  • Background/aims: 

    Gastroschisis is a rare congenital intestinal condition that, despite lifesaving surgery, can result in increased hospitalisations and a lower quality of life throughout childhood. There is a lack of population-level research on how longer-term outcomes for these children, including progression through school, differ according to complexity of disease.

    Methods and analysis:

    We will use ECHILD to create a retrospective national cohort of children born in NHS hospitals in England from 2003 onwards. Children with gastroschisis will be flagged using ICD-10 codes. We will assess healthcare use, mortality, educational attainment, school attendance, special educational needs and mental health service use for children aged up to 16. We will use multi-level generalised linear regression models to estimate the relative risk of adverse outcomes compared to unaffected children, accounting for demographic and socioeconomic confounders.

    ECHILD data used:

    HES:  Admitted Patient Care (2002/03 onwards), ONS Mortality Data

    NPD: Spring Census data, EYFSP, Key Stage 1, Key Stage 2 and Key Stage 4 data from 2010/11 onwards.