CDH UK - The Congenital Diaphragmatic Hernia Charity

CDH UK - The Congenital Diaphragmatic Hernia Charity Welcome to our registered Charity, leading the way in supporting families and helping to improve outcomes for CDH through education and research.

Congenital Diaphragmatic Hernia (CDH) is a birth defect that occurs when the diaphragm does not fully form, allowing abdominal organs to enter the chest cavity, and preventing proper lung growth. CDH affects around 1 in every 2500-3000 babies, of all races, religious backgrounds, and financial status - no matter how good the antenatal care. The cause is not yet known. Around 50% of babies do not s

urvive and sometimes those that do can have to overcome various medical complications. Many CDH babies have minor lasting health problems such as feeding aversions, asthma, scoliosis, or short-term oxygen dependency. A small number have major lasting health problems such as ventilator dependency, brain damage, or hearing problems. Many patients have no long-lasting medical problems at all other than a scar from the CDH repair. CDH can occur alone or with other birth defects, and, rarely, it occurs as part of a syndrome. Every CDH baby is different; there is no way to predict the outcome of any patient 100%. Some babies with no diaphragm and little lung growth survive, while some babies with good lung growth do not. These children are very different, requiring different treatments, and varying amounts of medical support. Our aim is to raise awareness of CDH and to offer support and advice to all affected by CDH and to educate on this condition. We are constantly looking for ways in which we can contribute to study and research programmes and hope that one day we can assist in finding a cause and prevention of CDH. For further information on CDH & our charity please visit our website www.cdhuk.org.uk

03/06/2026

Please share our posts and reels throughout June!

01/06/2026

Join in June 4 CDH and help to raise awareness to improve care and outcomes 🩷🩵

This year’s theme focuses on the importance of individualised care. To highlight this topic we are asking for individual stories and making days in June all about you 👉🏽🙋‍♀️👈
🩷🩵🩷🩵🩷🩵🩷🩵🩷🩵🩷🩵🩷🩵🩷🩵

Thunderstorms can trigger symptoms for those with lung conditions, like asthma.If the weather makes your symptoms worse ...
30/05/2026

Thunderstorms can trigger symptoms for those with lung conditions, like asthma.

If the weather makes your symptoms worse and you need to use your inhaler more, talk to your pharmacist, contact your GP or NHS 111.

Fourteen years ago we made our first short information film with the help of some families, to raise awareness of that...
29/05/2026

Fourteen years ago we made our first short information film with the help of some families, to raise awareness of that has since helped hundreds of families come to terms with a CDH diagnosis and to be able to support parents through pregnancy and beyond. It also helped us to develop further short animations to deal with the ongoing symptoms and issues related to CDH. Thanks to everyone that donated and helped a small idea become a reality. Please don’t forget to to keep our efforts in raising awareness of going!

L👀k what’s just around the corner 👇🏼 Raising awareness of is not an easy task when you are classed as a rare disease B...
23/05/2026

L👀k what’s just around the corner 👇🏼



Raising awareness of is not an easy task when you are classed as a rare disease BUT we have an amazing community to help us! For over a decade together we have made June a month of education and awareness with a sprinkling of fundraising thrown in to help maintain the CDH UK Research fund. This fund has enabled researchers to look into the things that matter to patients and families affected by Congenital Diaphragmatic Hernia and has provided answers to some important questions. So come on and join us this June by starting with some merch to raise

https://cdhuk.org.uk/our-shop-2/

All the very best to Daniel who is running the TCS London Marathon for CDH UK today! DANIEL WAS BORN WITH which makes ...
26/04/2026

All the very best to Daniel who is running the TCS London Marathon for CDH UK today! DANIEL WAS BORN WITH which makes this even more special for him and us as a charity 🩷🩵

GO DANIEL!!!

Our Secretary Katie also came out to Belgium to help man our information stand whilst our Chairperson chaired some of th...
16/04/2026

Our Secretary Katie also came out to Belgium to help man our information stand whilst our Chairperson chaired some of the parallel sessions and gave her presentation on CDH and Neurodiversity………she was also our cameraman 🎥 thank you Katie for being such a great help and support.

We are so lucky to have our Patrons advocating for CDH and most importantly helping to improve survival rates and outcom...
15/04/2026

We are so lucky to have our Patrons advocating for CDH and most importantly helping to improve survival rates and outcomes for patients and their families.
Here is our Chairperson Beverley with Professor Paul Losty (UK) and Professor Dick Tibboel (ND) at the CDH conference in Lille.

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The Denes, Lynn Road, Tilney All Saints
King's Lynn
PE344RT

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