Congenital Diaphragmatic Hernia: Assessing Care | Action Medical Research | Children's Charity

Congenital diaphragmatic hernia: assessing how care affects babies’ chances

This research was completed on 30 March 2012

Published on 30 January 2009

Estimates suggest about one in every 3,000 babies is born with life-threatening condition called a congenital diaphragmatic hernia, meaning they have a hole in their diaphragm.1 Major surgery soon after birth can prove life-saving, though, sadly, many babies don’t make it to surgery and those who do can still go on to develop serious disabilities. Researchers are conducting a nationwide study to assess how this serious condition, and its treatment, affects babies’ chances.

What's the problem and who does it affect?

Too many unknowns

Estimates suggest around 240 babies are diagnosed with a very serious condition, called a congenital diaphragmatic hernia, each year in the UK.1 These babies have a hole in their diaphragm – the sheet of muscle between the abdomen and the chest – which can be detected during pregnancy at the routine 20-week scan. The contents of the baby’s tummy can move into the chest, squashing the heart and hindering the development of the lungs.

Sadly, the condition can have a very serious impact on a baby’s state of health, sometimes causing stillbirth. For babies who survive pregnancy, major surgery soon after birth can prove life-saving, though the limited data that is available suggests many babies still develop serious problems with their lungs, brain, hearing, digestion and growth, which can cause life-long disabilities.

Many important questions remain unanswered. For example, it’s not clear how the condition, and its treatment, affect a baby’s chances. It’s therefore impossible to tell parents exactly how their baby is likely to be affected or what they can do to help.

What is the project trying to achieve?

A nationwide study

The researchers are collecting information on all the babies who are diagnosed with congenital diaphragmatic hernia during one year in the UK to find answers to several important questions:

•    How many babies have the condition and what proportion have other health problems?
•    How many babies are diagnosed during pregnancy and how many after birth?
•    How are affected pregnancies normally managed?
•    What proportion of babies are miscarried or stillborn, and how many die soon after birth?
•    What type of surgery is performed in which circumstances?
•    What is the outcome of surgery, including survival rates?
•    How does the condition affect the babies’ state of health during the first year of life?
•    How does the babies’ condition at 12 months of age relate to the nature of the original defect in their tummy?

What are the researchers' credentials?

Project LeaderDr J J Kurinczuk MD MSc FFPH
Project team
  • Dr Marian Knight FFPH DPhil
  • Mr David Howe FRCOG
  • Professor Paul Johnson MD FRCS (Paed Surg)
  • Professor Paul Losty MD FRCS (Paed)
  • Dr Judith Rankin BSc PhD
  • Professor Elizabeth Draper FFPH
  • Mr Sean Marven FRCS (Paed) Edin
  • Professor Peter Brocklehurst FRCOG, FFPH
LocationNational Perinatal Epidemiology Unit, University of Oxford in conjunction with Princess Anne Hospital, Southampton, John Radcliffe Hospital, Oxford, The Royal Liverpool Children's Hospital (Alder Hey), University of Liverpool, The Institute of Health and Society, Newcastle University, Department of Health Sciences, University of Leicester and Sheffield Children's Hospital
Other locations
  • • Wessex Fetal Medicine Unit, Princess Anne Hospital, Southampton
  • • Nuffield Department of Surgery, John Radcliffe Hospital, Oxford
  • • Academic Paediatric Surgery, Division of Child Health, University of Liverpool and The Royal Liverpool Children’s Hospital (Alder Hay), Liverpool
  • • Institute of Health and Society, Newcastle University
  • • Department of Health Sciences, University of Leicester
  • • Paediatric Surgical Unit, Sheffield Children’s Hospital
Duration3 years
Grant awarded30 October 2008
Start date1 April 2009
End date30 March 2012
Grant amount£77,076.00
Grant codeSP4407, GN1739

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The project leader, Dr Jennifer Kurinczuk, is working with a team of researchers who are expert in the various aspects of the research – in paediatric surgery, diagnosing and treating congenital anomalies during pregnancy and after birth, and in the methods of research they are using, such as the data-collection systems.

The study is very much a team effort. It is being led from the National Perinatal Epidemiology Unit (NPEU), and several leading researchers from other Universities across the country are taking part.

The NPEU has an international reputation for conducting studies that change policy, influence practice and improve the care of women and their babies. The unit has successfully established at the NPEU two national systems for collecting information on illness in pregnancy and in babies. The researchers have already used the data-collection systems in other studies and are confident they will work for this particular study.
 

Who stands to benefit from this research and how?

Answering important questions

This study will benefit babies with congenital diaphragmatic hernia, their parents and the doctors who care for them both before and after birth. It will provide invaluable information on how many babies are diagnosed across the UK each year, how they fare during pregnancy and in the first year of life, and how the different types of surgery affect their chances.

Better information will make it easier for obstetricians to counsel parents when the condition is diagnosed during pregnancy and for surgeons to talk to parents about the surgery their baby will need after birth. Doctors will be better placed to answer parents’ questions: What are my baby’s chances of surviving? What sort of surgery will they need and how will it benefit them? What health problems are they likely to experience as they grow and develop? What sort of care will they need over the longer term?

The researchers hope this study will also help clarify the best ways to care for affected babies and support the development of new treatments, with the ultimate aims of improving the babies’ chances of surviving and stopping them from developing disabilities.

References

1. Kurinczuk JJ, Draper ES, Budd JLS, Perkins MJ, Clarke M. Trent Congenital Anomalies Register. The first five year: Congenital anomalies in births 1997-2001. Leicester: University of Leicester. 2003.

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