My baby's CDH diagnosis - Claire's story

Claire's Story Hero

At her 20 week scan, Claire was told her baby had a congenital diaphragmatic hernia (CDH).

The morning of our 20 week scan, we were so excited. Like most expectant parents, we were looking forward to seeing our baby and finding out the gender. The scan took ages but I thought this was normal as it was a detailed check, then I heard the words: “I don’t want to panic you but I think there’s something wrong”.

We were taken into a room and a doctor explained that our baby had a congenital diaphragmatic hernia (CDH) and we were given a brief explanation and a leaflet. CDH means there is a hole in the diaphragm which allows the stomach and bowel to grow in the chest area reducing the space for lung development and putting pressure on the heart.

We felt like we had been hit by a bus. Somehow we drove home and had the horrible task of ringing the family and work to explain it - even though we didn’t really understand ourselves.

The next day we went to Leeds General Infirmary (LGI) to see a consultant who confirmed the diagnosis and noted that our baby’s chance of survival was 15 to 20 per cent due to the amount of organs in the chest area.

We were offered an amniocentesis as we were told there would be zero chance of survival if there were other complications. We were given a few days to decide whether to proceed with the pregnancy or have a termination due to the procedure being more evasive after 22 weeks. We took the week off work to process all of the information we had just heard. We were really looking forward to our 20 week scan and it turned out to be the worst day of our lives. We took it in turns to break down. We had little sleep and went for long walks. I spoke to Antenatal Results and Choices (ARC) who were fantastic. We were given a tour around the neonatal unit which really helped us understand what it was going to be like after the birth.

On 19 December and at 37+6 weeks, I gave birth to Jessica Grace weighing 4lbs 8oz. She was immediately intubated and rushed to the neonatal intensive care unit (NICU) and I got to see her six hours later. For the first couple of days, we had to see if she was strong enough to survive. She was on nitric oxide and various other drugs for pulmonary hypertension. Every hour we spent with her was a blessing as we knew it could be our last.

I saw new parents walking around the neonatal unit completely shell shocked not expecting to be there but because of our early diagnosis, we were prepared both mentally and physically for what was to come. We were prepared for not seeing or holding our baby, expressing not breast feeding, our sleeping arrangements, how to get around the unit and the medical terms that the doctors would be using. At ward round, I would chat to other parents and ended up making some close friends.

During the first few days there were a few scary moments but thankfully, at five days old and on Christmas Eve, she had her hernia repaired. We spent Christmas Day by her cot in NICU. She opened three presents - a gift from Bliss and two from my brother and his family. We had not bought one has we had no idea if she would be with us by that point. It was not the usual first Christmas with your child!

We got to hold Jessica for the first time at nine days old, negotiating the tubes and wires. She continued to do well and was allowed home after three weeks which was just amazing. We never thought we would get to this point so were overjoyed. However this was short lived and after a week, she went back onto the neonatal ward for a further four weeks due to failure to thrive. We continued to struggle with a range of issues mainly weight gain, reflux and feeding. Settling home was difficult after seven weeks in hospital as we were used to the structure of routine, the charts and the ‘bings’ of the machines. Once home, my maternity leave was an endless stream of appointments either at the doctors or at the hospital including a visit to A&E with bronchitis.

Jessica is now three and a half and we are still battling with the same issues and developmental delays, but she's a wonderful and happy little girl. She goes to nursery and swimming and plays football like all other toddlers. We have so much to be grateful for. We couldn't have got through our experience with the excellent staff at LGI and fantastic support groups like CDH UK and Bliss.

If you have been affected by any of the issues mentioned in this post and would like support, view our online support pages.