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Archives: Survivors

Rosie Mae

Rosie was born on 10th July 2019 at the women’s hospital in liverpool UK with LCDH. She was intubated at 4 minutes old and was breathing for herself 4 weeks later after being told at 2 days old she wasn’t going to survive, but she pulled through Rosie had her repair at 14 days old and is now fit and well thanks to CDH UK and alder hey children’s hospital

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George Jennings

We didn’t know anything was wrong until George couldn’t breathe at birth. The emergency button was pressed and the room filled with people who rushed to help my baby to breathe. He turned pink and I got a brief look at him before he was taken away. Four hours later I got to go to NICU and was told about CDH. He had his repair two days later and did well. He failed to come off his ventilator at first but four weeks later we were home. Overall. it was a terrifying and stressful experience. George...

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Amelia madison maskrey

Millie was born in November 2014, 8yrs after her big brother who also was born with a rare condition (Tracheo Oesophegeal Fistula/Oesophageal Atresia). The pregnancy with Millie was straight forward, though I was kept a close eye on due to her brothers issue. I managed to do a lot of firsts with Millie that I couldn’t do with her brother, though she didn’t feed for long periods of time, my health visitor wasn’t very helpful and just said “some babies snack” this went...

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Charley Jaye Turnbull

Charley Jaye was born with undiagnosed LSCDH – day 5!had her repair and left NICU when she was 16days old. A true warrior princess. She then went on to have a rare type of meningitis when she was almost 9 months old. She’s the bravest, most beautiful and bright warrior we’ve ever laid eyes on and she’s ours ❤️

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Cyrus Jai Smith

Cyrus was born via emergency c-section, on 22nd December 2018, weighing 9lb4oz. Cyrus was resuscitated 3 times, and they found he could not breathe on his own so they wheeled him down to NICU, where they found that he had an undiagnosed diaphragmatic hernia. Our little boy spent 3 days in NICU before he got his very successful surgery, on Christmas Day 2018.. The most magical day of our lives. Cyrus spent another 25 days in the NICU and we got discharged. He is now the most happiest, contented...

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Ezz El Deen

We discovered our baby’s condition at 21st week of pregnancy. We talked with every doctor about that condition. We started reading every piece of information we could find on the web. Nobody could till us what would actually happen or how it’s going to be like. It all depends on my baby lung condition and his ability to get better. He arrived to this world quietly after 38 weeks of pregnancy. His left lung was so tiny because his stomach, intestine and spleen went up to his chest through...

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Louis Eames

Like many expectant parents, we excitedly (and nervously) went along to our 20 week scan completely oblivious to the devastating news we were about to be told. The sonographer had ‘found something that wasn’t quite right’. The consultant looked at the scan and said he thought it could be CDH but we’d need to be referred to St Mary’s in Manchester for further investigations. An agonising week later, the diagnosis was confirmed. Our little baby had a left side diaphragmatic...

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Minni Boulden-Thomas

My partner and myself attended our 20 week scan and it was then when we knew something was wrong. The sonographer told us that the babies heart was not in the right position and she was going to refer us to a specalist. I remember feeling confused and we had to wait all weekend to see the specalist. We were referred to Liverpool Womens hospital and after the ultrasound we were told the devestating news that our baby girl had a congenital diaphragmatic hernia. From then we were scanned more regularly...

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Charlotte Forber

Charlotte was born with left-sided congenital diaphragmatic hernia on the 2nd February 2018, she had her hernia repair operation on 5th February 2018 at Alder Hey Children’s Hospital. On the 16th February 2018, Charlotte came home. ❤️

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Myles

At my 20 week scan, Myles was diagnosed with left-sided CDH with a 1.7cm hole in his diaphragm and both his intestines and spleen in his chest. I was induced on my due date at Liverpool Women’s and he was born the day after and immediately incubated and took to special care. At 3 days old we moved to Alder Hey, at 5 days old he had his repair operation where the diaphragm was sewn together with no need for a patch and then we slowly established feeding and reduced the help from the machines until...

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