CDH UK - The Congenital Diaphragmatic Hernia Charity

Home
United Kingdom
King's Lynn
CDH UK - The Congenital Diaphragmatic Hernia Charity

Directions Website Contact the organisation

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 survive 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

09/11/2026

Oshi and his family recently completed a multi part adventure in north Wales, to raise over £2,000 for CDH UK. This was Oshi’s eighth fundraiser challenge - he has undertaken a new one every year to celebrate his birthday since he was one year old.

CDH UK is a cause close to this family’s heart. Oshi was born with double CDH, an extremely rare form of the condition and for him, an effect of Kabuki Syndrome. At 5 days old he survived major surgery to repair his diaphragm. Today he is a thriving 8 year old who loves surfing, reading, and DJing.

Oshi’s fundraiser this year consisted of covering a total of 50km, through cycling, hiking, paddle boarding, running, lake swimming, river walking and skateboarding through Eryri and Anglesey, over one weekend. He and his family smashed their goal in spite of torrential rain!

What an amazing and inspiring family!! 🩷🩵

03/11/2026

‘My two CDH babies ready for Halloween 👻 🧙 🏴‍☠️ ###’

Don’t they look fangtastic!

02/11/2026

It looks like you all had a frightfully good time during weekend!

‘My little man chose his own outfit from the whole shelf of fancy dress options. “I’m a witch hahahaha” he exclaimed’ 🤣

We are loving seeing your pictures which will be shared all this week!

30/10/2026

It’s Halloween weekend and we would love to see your scary efforts! Please send in your pics to our inbox for posting on our page use the hashtags and when reposting

Have a frightfully good weekend 👻

23/10/2026

Here’s to that Friday feeling and to Lwcasz age 5 who raised £170 for CDH UK by doing the Cardiff fun run the other week 😍, he is so proud and so he should be!
🩷🩵
WELL DONE 👏

15/10/2026

Please show your support for all those who have suffered baby loss by lighting up a candle or lamp to acknowledge and raise awareness for

09/10/2026

Today is the start of Baby Loss Awareness Week or if you would like to share your story for our social media and The CDH Magazine 2026 to help raise awareness please send to our page inbox or email to [email protected]

01/10/2026

It’s nearly that time of year again where we invite you to share your stories, experiences and fundraising activity with us for our annual publication ‘The CDH Magazine’. This has been going nearly as long as our organisation first as a newsletter and later as a please email any content to [email protected] with the subject of your name followed by newsletter. We can’t wait to receive them!

14/09/2026

‘Our darling son Quinn turns 10 today. We are in awe of how far he’s come in life, how happy and active he is and are forever grateful for your support during the darkest hours of my pregnancy diagnosis. I wondered if he could have a birthday shout out this year with him being the Big 10 as he calls it.
Thank you ☺️’ ~ Mum

HaPpY Birthday Quinn! 🎂🎈welcome to double digits 🤩

Address

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

Website

http://www.cdhuk.org.uk/

Alerts

Be the first to know and let us send you an email when CDH UK - The Congenital Diaphragmatic Hernia Charity posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.