At 20 weeks pregnant, myself and my husband went to our ultrasound scan excited to hopefully learn the sex of our baby. Instead we were given the devastating news that our baby had a diaphragmatic hernia on her left side, Congenital Diaphragmatic Hernia is a hole in the diaphragm, which allows the stomach into the chest cavity and prevents lung development. It is a rare condition affecting approx. 1 in 2500 babies, but is not well known and there is little awareness. Babies normally either have a left sided diaphragmatic hernia or the more serious right sided. After many tests including a test to check for chromosomal issues (which luckily came back all clear), we were told that we were having a little girl with a left sided diaphragmatic hernia. Her heart had been pulled over to the right and she had stomach and bowel in her chest cavity. Her specialist team told us that whilst our baby appeared to be on the better end of the scale with regards to how her lungs were developing, we would never truly know how she would cope until she arrived as they cannot tell from scans how her airway entry would be.
We had scans every three weeks for the rest of the pregnancy and I got in touch with a charity CDH UK who helped support us through this time and put us in touch with families in a similar situation. They provided us both with a lot of advice and general support, helped us plan for the arrival but also kept us grounded and realistic as to what to expect.
On Tuesday 19th March I went into early labour, and after a long and stressful labour, with lots of ups and downs, Jessica finally arrived at 2.05am on Thursday 21st March. I held her briefly whilst they cut the cord but she was then taken to a table to be ventilated and then was taken away for further testing, we did not see her again until 7am. Luckily Jessica's airway development and lung function appeared to be good and she had surgery to repair the hole 36 hours after she was born. During surgery it was discovered she had more in her chest than expected, including intestines and her spleen. Her right lung development was good though and she had a small amount of left lung which they were confident would expand as she grew. She then spent 10 days in intensive care before being weaned off the ventilator. We eventually brought her home at 3 weeks old and Jessica has just been given the all clear by her doctors and they are very pleased with her development. She may incur health issues as she grows, but she is here and thriving at the moment, if a little on the small side.
Whilst Jessica was in hospital my husband and I were able to be at her side every day, we couldn't have done this without Ronald McDonald House who offered us a room at the hospital for the duration of her stay. This cut out lengthy journeys to and from the hospital each day. They support parents in similar situations as to ours and provide the accommodation free of charge. They are also hoping to expand their capacity at the JR in Oxford.
CDH UK have also supported us every step of the way and are trying to raise awareness of this condition. It's as common as Cystic Fibrosis and Spina Bifida but I for one had never heard of it before Jessica's diagnosis and very few people have. They are a small charity run purely by volunteers and help parents that aren't as lucky as us with accommodation and transport costs, as some families have to travel hundreds of miles to be under a specialist centre. They are also putting together a research fund to try and get much needed research into the best treatment pathways for babies with CDH.
So that's our story and the reasons we are raising money for these two fantastic charities, we really don't know how we would have coped without them. Jessica was very lucky and a true fighter, a lot of babies aren't so lucky and CDH sadly only has a survival rate of approximately 50%.
Megan Chapman x