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Kayleb – Arthur Barton

Date Of Birth: 2019-02-01Date Of Passing: 2019-02-25 My name is Kayleb I was born with a right and left congenital diaphragmatic hernia I have a big brother called Cameron and I couldn’t wait to meet him but I sadly lost my fight against CDH and passed away peacefully in my mum and dads arms. My […]

Roman William Hill

Here is our brave warrior Roman and his CDH story. A boy with a right sided diaphragmatic hernia with a type C defect and 11% chance of survival. We found out that our baby had CDH at 35 weeks (December 2022). We had gone to visit a birthing centre as this was where we were […]

Amelia-Rose Levi Perry

At 19 weeks pregnant we got the CDH diagnosis and we got told it was severe. After weeks of testing and appointments we got told she would be unlikely to survive and I wouldn’t make it to full term. However out daughter proved everyone wrong and at 39 weeks she came into the world screaming […]


Finley was diagnosed at our 36 week scan. It had been a pleasant pregnancy up until then! I was terrified, Finley is my first child and the odds weren’t looking too great. We were told it was 50/50 that he would survive at birth. There was a team waiting when he was born and he […]

Kitty Goodman

Date Of Birth: 2010-02-09Date Of Passing: 2010-02-09 Kitty was diagnosed with CDH at a scan at 22 weeks. After 2 weeks of appointments we were told she had very little chance of survial and we made the heartbreaking decision to have a medical termination. She was so beautiful and we were able to spend some […]

Theodore ‘Teddy’ John Biggs

Date Of Birth: 2023-09-18Date Of Passing: 2023-09-18 Teddy was diagnosed with a severe left side CDH from our 20 week scan. We were treated by Kings College Hospital who offered us the FETO treatment as his chances were so low. The decision wasn’t easy as we understood the risks however we wanted to give him […]

Ruairi, Niall, and Jack

Ruairi, Niall, and Jack( my son ) all born in August/September 2000 and had surgery in Royal Belfast hospital for Sick Children. Date Of Birth: 2000-09-25

Georgia Leigh K Turnbull

Georgia was born a healthy baby. We went on holiday to Cyprus just after her second birthday. She took seriously ill and required CPR from her daddy! Upon arrival at Pathos hopsital she had a pneumothorax, this was drained instantly. She was transferred 2 hours alone to Nikosia Children’s hopsital where she was diagnosed with […]

Dexter Bowker

Date Of Birth: 2023-03-11Date Of Passing: 2023-03-09 At our 20 weeks scan it was confirmed that Dexter had severe right sided CDH. With his liver up in the chest and his lungs very undeveloping. At 29 weeks we saw the paediatric nurses who told us that if we went full term it would be to […]