Aria’s Story - Congenital Diaphragmatic Hernia (CDH)

When I was just under 17 weeks pregnant, our baby was diagnosed with LCDH. All that was on the consultant's mind at the time was two options. We could carry on with the pregnancy or an abortion. There was only ever one option for us and that was to carry on with the pregnancy. We are so glad that we did!

After this diagnosis, we were referred to our local specialist hospital for the rest of the pregnancy. Numerous scans and appointments later, we were given an elective date for a C-section.

On July 14th, 2021, our little girl was born and was whisked away from us immediately. It was the scariest moment of our lives and we couldn't wait to see her again. We just wanted to hold her and give her cuddles, but we knew she needed special care and she was in the right place.

We finally saw her after a couple of hours and, although we were terrified and anxious, we fell in love immediately. Right from the start, our baby girl was doing incredibly well and needed very little breathing support. At 4 days old, she was transferred to the children's hospital for her repair surgery which was done when she was 8 days old. We were informed that she had a very large hernia and lots of bowel and spleen up in the chest. Luckily, the liver had managed to stay below the diaphragm.

We were very worried on the day of the operation, but we knew she was in safe hands with the surgeons. After the surgery, we met with the surgeon who told us about the process and said everything went well. To our surprise, the surgeon was the same one that operated on her big brother to save his life. Only a few hours after surgery, Aria started to open her eyes and a few hours after that, we finally had our first cuddles. This was the best moment in our lives!

All breathing support was removed 2 days after surgery and we began to start working on feeds. Our little girl tolerated everything very well and we managed to bring her home at 20 days old on full feeds. She only needed omeprazole and Gaviscon at home.

We are amazed by our little superstar and we can’t believe how fast she became well enough to come home. She's now 8 weeks old, feeding and growing well!

She has a long road ahead of her because she is a symptomatic carrier of a rare syndrome that our youngest boy has and that I am also a gene carrier.

We are so proud of her and send our love to all CDH families!