A report into the care of unborn and newborn babies diagnosed with Congenital Diaphragmatic Hernia (CDH) and their mothers was launched on Thursday 11 December 2014, following a national confidential enquiry. The enquiry found that specialised services in fewer centres, nationally agreed management of babies with CDH and better and more sensitive information for parents would all help improve the care families receive.
The enquiry was published by MBRRACE-UK, a collaboration of academics, researchers, clinicians as well as representation from Sands following on from its report into Maternal Deaths which was published on 9 December.
CDH occurs when the baby's diaphragm (a thin sheet of muscle that separates the heart and lungs from the stomach and helps us to breathe) does not develop properly. This means that the stomach and other organs such as the liver and intestines may push into the chest cavity. This can affect how lungs develop and grow making breathing difficult or in some cases impossible.
Whilst CDH is relatively rare with up to 400 cases of CDH in the UK very year, when it does happen it is a devastating diagnosis for families. Most cases (around 70%) are diagnosed before birth by ultrasound scan during pregnancy. One in three mothers with an antenatal diagnosis of CDH will either miscarry or choose not to continue the pregnancy. Among those babies who are diagnosed with CDH and survive beyond 24 weeks of pregnancy, around half will tragically go onto die, either in the womb or shortly after they are born. Babies with CDH who survive will experience ongoing problems with their health, some of which are mild, some of which are severe. A child with CDH could have learning difficulties, hearing problems and behavioural disorders. The outcome for these children will depend on whether they are born before term (37 weeks); how big the hernia is, whether there are other birth defects or genetic problems and how badly the development of the lungs has been affected.
The outcome may also depend on the kind of care babies receive, and the confidential enquiry process aims to focus on individual past cases to better understand how care could be improved for the future.
A panel of experts reviewed the cases of 57 babies diagnosed with CDH in 2009 and 2010. Each case was anonymised so that there was no bias in reviewing the care and then graded to establish whether the care was good or could be improved and, where improvements were necessary, whether this might have in fact made a difference to the outcome. In almost all cases there were areas where improvements to care could have been made and in almost one in three of those cases that may have made a difference to the outcome.
Many of the women received different care depending on where they were diagnosed and where they were referred. This was partly due to the fact that there is currently no agreed protocol for best practice on how to both screen (diagnose) and respond - in terms of prognosis and treatment - to cases of CDH. The report suggested that if the condition were treated in fewer centres there would be less variation in care. More research was needed though to support the development of best practice. It was clear from the enquiry and from parents who responded to a survey run by the parent support group CDH-UK also included in the report, that it's vital for parents to receive improved counselling and psychological support as well as better information when faced with the devastating news that their baby has CDH.