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I was pregnant with my third child and went for my 12-week scan, excited to see my baby for the first time. But that joy quickly turned to worry when the sonographer said something was wrong – the baby’s stomach appeared to be next to the heart. We were taken to another room and told to return in four weeks for a follow-up scan. No further explanation was given, just that it might be a hernia. We left devastated, spending those weeks imagining the worst without understanding what it could mean.

 

At 16 weeks, we were referred to fetal medicine and diagnosed with left-sided Congenital Diaphragmatic Hernia (CDH). (Congenital Diaphragmatic Hernia (CDH) is a rare and serious condition that occurs during fetal development. It happens when the diaphragm — the muscle that separates the chest from the abdomen — doesn’t form properly, leaving a hole. This allows abdominal organs such as the stomach, intestines, and liver to move into the chest cavity, which can severely affect lung development and function)

 

I had never heard of CDH and didn’t know what it meant. The doctor and nurse explained we’d need heart scans, an MRI, and genetic testing. They also mentioned the option of medical termination. Over the following weeks, we travelled across the country for tests and scans. Thankfully, the genetic results came back clear. We were given a head-to-lung ratio of around 43% and told our baby had a 50–50 chance of survival. We also found out we were having a boy.

 

As the months passed, we were closely monitored and met the surgeons and staff who would care for our baby. We began preparing ourselves and our children for what lay ahead. We found CDH UK, who sent a support package, offered online sessions, one-to-one phone support, and connected us with other families through their Facebook group. Without CDH UK, I would have felt so lost and isolated. They gave me understanding, support, and hope.

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Jonah Benjamin Fletcher was born on 19 October and was immediately placed on a ventilator and moved to NICU. That first night, he struggled and was switched to oscillation ventilation. He was so still and small. I didn’t realise I wouldn’t see his eyes open for days – I could only stroke his head.

 

The next few days were filled with heart-stopping moments as he struggled to breathe and needed frequent suctioning. I felt helpless. On day six, Jonah was strong enough for surgery. After three hours, we received a call saying things weren’t looking good and to prepare for the worst. For 45 minutes, we thought we had lost him. I remember wondering how I would tell his siblings and grieving that I’d never seen his eyes or held him. Then the surgeon came in and told us Jonah had stabilised.

 

Recovery began. Feeding was a challenge, and he was on NJ feeds for a while. But slowly, he started reducing oxygen and pressure, moved to NG feeds, and had awake time. At 12 days old, I held him for the first time – a moment I’ll never forget. He continued to grow stronger, moved to CPAP, then air, and eventually breastfed. After just over a month, we were discharged.

 

Jonah is now 3 years old and meeting all of his milestones. He still has outpatient appointments, 3 more operations but he’s thriving. CDH has been the biggest rollercoaster of my life. I’m so grateful for the support networks we had and wish there was more understanding and help for parents going through this journey.