How to support those living with CDH

Beverley Power

Chairperson, CDH UK – The Congenital Diaphragmatic Hernia Charity

Congenital diaphragmatic hernia (CDH) is a complex rare condition and nobody knows this better than a team of parents on a mission to take on the challenge.

Congenital diaphragmatic hernia (CDH) is the malformation of the diaphragm in an unborn baby that results in a hole, which allows abdominal contents to rise up into the chest area, compressing the lungs and the heart. Survival is around 60% and resulting health issues can vary in type and severity.

The work of CDH UK began with the birth of founder Brenda Lane’s daughter 27 years ago and a need for information and support. Brenda realised that talking to other families and finding access to good quality information were key to helping with a diagnosis of congenital diaphragmatic hernia (CDH).

I joined the charity in 2009 after my grandson was diagnosed with CDH before birth. Since then, I have worked to reach out to more families and make support more accessible.

Realising research and collaboration were also priorities, I wanted to create innovative and cost-effective ways to attract support for the charity and increase voluntary income. By attending events where I could learn, network and promote our work, we were able to establish the first ever voluntary CDH research fund in the UK.

Survival is around 60% and resulting health issues can vary in type and severity.

Big impacts

We support many families across the UK and beyond, providing much needed services and resources. So far, the charity has raised nearly a million pounds for research. Funding has been awarded to various projects including improving counselling for parents, developing core outcome sets, investigating new therapies, studying outcomes in patients and supporting students in areas of research involving genetics.

Collaborating to help patients and families to enjoy improved outcomes and quality of life is a huge part of our work. Providing data and patient insight, helping with the development of registries and care pathways, data and safety monitoring and reviewing care and services are all in a day’s work.

In 2019, CDH UK published its first research paper ‘Long-term feeding issue and its impact on the daily life of congenital diaphragmatic hernia survivors: results of the first patient-led survey’.

We also have an official CDH Awareness Day (28th June) to help raise awareness on a local and global level.

Future goals

But there are still many unanswered questions for families and we are determined to continue to try to help answer them and to be a voice for patients everywhere.

We believe the future is bright and have already seen an improvement in survival rates and quality of life, we expect this theme to continue with our help.