CDH UK - The Congenital Diaphragmatic Hernia Charity

05/09/2026

Remembering Jakub on what would have been his 26th birthday 🎈

Thinking of his family always 🩷🩵

26/08/2026

Poppy turned 3 this week! She was born with a left-sided cdh and recovered extremely quickly with the amazing help from St Michael’s hospital in Bristol!

We hope you enjoy being 3 Poppy 🥳🎂

17/08/2026

Luke recently celebrated his 21st spin around the sun! 🎉🥳🎂 and we wanted to wish him all the very best

13/08/2026

‘Happy 11th birthday to our boy Jordan 💙💚

Heart and fight of a lion 🦁

Wee trip to GP yesterday morning to keep up on our toes 🤣

Keep being you our fun & adorable boy the goal machine that you are xx

Love you Braveheart love Mum & dad xx ‘

03/08/2026

We love making wishes come true 💫 and especially ones that involve helping others!
‘My daughter is walking a marathon to raise money for CDH UK.
Both of her cousins have CDH and she dotes on these girls. It is taking place on Saturday and so far she has raised over £400 but we want to reach our goal of £500. I was hoping you could promote her walk on your social media's to help raise as much as we can?’

You can help make a wish come true by donating here https://www.justgiving.com/page/eva-dean?utm_medium=FR&utm_source=CL

21/07/2026

Raising awareness of CDH comes in many shapes and forms 👇🏼

‘Noa, born with a left sided CDH in 2006, turned 20 on 30th May and we gifted him his first tattoo.
To ‘fly the flag’ for CDH uk, he asked the tattooist to add the CDH symbol into his design and this is how it turned out. Super proud mummy ❤️🥰’

CDH UK raising awareness since 1994!

15/07/2026

One of the rider’s in the stage o’ t’ Tour event is James 👇🏼

“Hi all, I’m James and I will be tackling this ride in aid of CDH UK. I had a Congenital Diaphragmatic Hernia and underwent surgery shortly after birth. My parents said that afterwards the surgeon told them “we’ve sorted him out, but he’s unlikely to ever achieve anything in sport.” This was due to my lungs being underdeveloped with being pressed in amongst all my other organs caused by the CDH. Aerobic sporting activities were recommended as a way to help offset the underdevelopment during my childhood, and given my Dad hates running and isn’t a fan of swimming either, cycling it was. Now many years on, I’ve thought what better way to prove the surgeons wrong, whilst also doing some good towards helping others with CDH, by completing a stage from one of the world’s toughest sporting events.”

Thanks James and all of the very best!

15/07/2026

What a brilliant way to raise funds! 🩷🩵 James is also a CDH survivor himself, so an extra special challenge 😊

Thanks James so much 💫

Returning to our rider introductions, next is James, the man to blame for all this happening!

"Hi all, I'm James and I will be tackling this ride in aid of CDH UK. I had a Congenital Diaphragmatic Hernia and underwent surgery shortly after birth. My parents said that afterwards the surgeon told them "we've sorted him out, but he's unlikely to ever achieve anything in sport." This was due to my lungs being underdeveloped with being pressed in amongst all my other organs caused by the CDH. Aerobic sporting activities were recommended as a way to help offset the underdevelopment during my childhood, and given my Dad hates running and isn't a fan of swimming either, cycling it was. Now many years on, I've thought what better way to prove the surgeons wrong, whilst also doing some good towards helping others with CDH, by completing a stage from one of the world's toughest sporting events."

14/07/2026

Well done to Dale and Lorna for their amazing fundraising efforts for CDH UK raising over £3000! ! 🩷🩵
They completed the MK half marathon together, Lorna completed the 70.3 mile outlaw triathlon and Dale the 21k beat Spartan race 💫🎉

If it wasn’t for like Dale and Lorna we really couldn’t do the work we do to support families and

09/07/2026

Sadly CDH still has a low survival rate, but due to the efforts of the medical community, researchers and our efforts this isn’t as low as it once was. We estimate that it is globally around 60% so we still have lots of work to do to help babies like Trinity.

‘I found out I was pregnant with my baby on Mother’s day 2023. My partner and I were so happy. Everything was going so well and we didn’t suspect there was anything wrong until we had our 20 week scan. They told us they could see a problem with her heart. We had a following scan to find out what was going on and they confirmed that our baby girl had Left Sided CDH which was causing her heart to be pushed onto the right hand side of her chest and her bowel, stomach and some liver was in her chest. She was also diagnosed at this stage with a AVSD heart defect. They told us her chance of survival (if making it to full term) was 50%. We had lots of hope and attended fortnightly scans. I ended up developing polyhydramnios (extra amniotic fluid) at around 26 weeks and so I was monitored and scanned weekly. We were warned at this point she has a higher chance of being preterm and if that happened she is unlikely to survive birth.
On the 22nd September my waters broke at exactly 32 weeks and I went into labour straight away, resulting in the birth of my beautiful daughter Trinity on the following day, Saturday 23rd September 2023. Trinity was taken to the NICU and had to go into emergency surgery only a few hours after she was born because the doctors had trouble getting her breathing and other tubes down her throat. We soon found out this was because she also had oesophageal atresia (OA) and tracheo-oesophageal fistula (TOF) on top of the CDH. During the surgery they found out that Trinity had a complete CDH. She had no diaphragm at all on the left side, so in order to repair she would need a full patch. They also found out that on top of her AVSD heart defect, she had a further heart defect called a Hypoplastic Aortic Arch. In the surgery, the surgeons were not able to fix the OA/TOF because of how severe it was. Unfortunately they told us because of how severe each problem she had was, they couldn’t help her.
Despite the odds our beautiful girl stayed with us fighting so hard for 8 days. She passed away on her daddy’s chest. We miss her so much and she will always be in our hearts. We thank CDH UK so much for their open arms helping to support families like ours in any way they can.’
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