Sinead’s Story - Congenital Diaphragmatic Hernia (CDH)
Our daughter Sinead was born on the 7th of November 2000, weighing a healthy 6lbs 4oz. Upon her birth, the midwife realized something was wrong, and she was rushed to the SCBU, a special care baby unit, where it was discovered that she had left-sided Congenital Diaphragmatic Hernia (CDH). My husband went home to tell our other children that they had a new baby sister while I recovered in the hospital. During this time, the pediatrician, a wonderful woman named Dr. Gallagher, came up to the ward where I was and explained the seriousness of the condition and how rare it was in Ireland. While waiting for my husband, John, to return, Dr. Gallagher asked if we had a name picked and asked if we would like to get our baby baptized - we agreed.
In the year 2000, Portiuncula hospital was sharing the only ambulance that had an incubator with another hospital 40 miles away, so we had to wait for transport. While we were waiting for the ambulance to come back, my husband returned with the priest. We baptized her and named our daughter Sinead Catherine Dillon.
Sinead was transferred to Our Lady's Hospital in Dublin that night to be treated. It was heartbreaking saying goodbye to her, but Dr. Gallagher assured us that she would be fine for the journey. In the ambulance, she was using a ventilator and a doctor and nurse to oversee her care during the drive. Sinead had her first surgery at a day old by Professor Fitzgerald. After some good days and bad days, Sinead was well enough to come home for Christmas.
Early January, while I was feeding her, she went stiff in my arms, and her eyes started to roll in her head. She went blue, and I was terrified. She was rushed back to Portiuncula Hospital, where it was discovered that she had reherniated, and this time her organs were pushing on her heart. She was rushed back to Dublin, where she had surgery for a redo repair and LADD's procedure for malrotation. This was a very difficult time for us as our other kids were only 18 months, 3 years, and 4 years old, and we had moved to a new county where we knew absolutely no one. We had to arrange to bring the kids to various family and friends for care. There is parent accommodation in the hospital, but it had to be booked in advance, so my husband spent many nights sleeping in the car in the hospital parking. Financially it was difficult due to the added expense of eating out, parking, accommodation, paying childminders, etc., and my husband had to take unpaid leave.
When Sinead was on the road to recovery, she was transferred back to the hospital where she was born. It was closer, and she was able to have shared care between there and Dublin. Sinead suffered an awful lot with reflux (and still does). When she reached school age, I had to explain her condition and that she had to take certain medications. Luckily, this wasn't a problem with her school. We came up with an agreement that Sinead would be allowed 3 vomits a day in school before they would ring me. The school was brilliant with her and very understanding.
In 2011, we noticed that her vomiting was getting much worse, and she was referred to the GI clinic in Dublin. It was discovered that she had erosive esophagitis, which was circumferential and extending 3 cm above her gastroesophageal junction. She also had a hiatal hernia of about 3 cm. She had surgery for a kink in her bowel and had her appendix removed simultaneously. As Sinead was our 4th child, we never really treated her differently from her siblings. She had to share duties with the rest of them. In fact, her siblings gave her the nickname "Pukahontas" as she'd vomit so much. She did great in school and made wonderful friends. When her friends noticed the scars on her tummy, she explained her condition. Her scar never really bothered her. Once she went to a doctor, and when he saw her scar, he told her to never wear a bikini. Thankfully she didn't take it to heart - she wears what she wants, and yes, she's worn a bikini. She just gets on with things and takes part in all activities of interest.
She was a typical teenager and volunteered for various groups helping people. She is attending college in Limerick now and is in the middle of doing her first year of exams. She's hoping to become a science teacher. She loves the student life (sometimes too much). In Ireland, things have improved so much for children born with CDH since Sinead was born 20 years ago. I have noticed, though, that it is becoming more common. It doesn't feel as rare. We are so proud of Sinead, she never let CDH get to her, and she continues to amaze us every day. To all parents that have CDH kids - it can sometimes be a long battle, but well worth it!
- Sinead's mother, Martina NooneDillon
