When I was 20 weeks pregnant, my husband Paul and I went for a scan at our local hospital in Dewsbury, West Yorkshire, eager to hear that our baby was healthy and excited to see if we would be having a boy or a girl. We were overjoyed to find out we’d be having a baby boy, to be called Davey, but sadly this feeling didn’t last. We were in for a massive shock. During the scan the sonographer discovered that our baby’s heart was too far over to the right and what looked like microcysts were developing on his lungs. Clearly concerned, we were told to go to Leeds General Infirmary (LGI) for a more detailed scan as soon as possible. From this, doctors initially thought Davey had an incredibly rare condition which occurs in just one in 10,000 babies called congenital cystic adenomatoid malformation – a developmental problem that causes cysts rather than tissue to grow on the lungs.
It wasn’t until I was 28 weeks pregnant that we found out that Davey actually had a condition called congenital diaphragmatic hernia – a birth defect causing a hole in the diaphragm, allowing the organs from the abdomen to move into the chest. Davey’s stomach, spleen, small and large intestines were in his chest, crushing the left lung and shifting his heart to the right side of his body. The thought of this was terrifying, even more so when we were told our little boy had just a 50% chance of survival. We were absolutely devastated with the diagnosis but we knew we had to be strong for our boy.
The 11 week wait to be induced was absolutely excruciating but I was determined to stay positive and hope for the best. I was finally induced on 17 July 2017 and Davey came into the world the next day at 3:53am at LGI. We were warned beforehand that as soon as he was born a team of doctors from the neonatal intensive care unit (NICU) would be on standby to make sure Davey was in a stable condition. No sooner had I given birth to my baby he was taken away from me for lifesaving treatment, it was heartbreaking.
Eight hours later, and after a very anxious wait, Paul and I finally got to see our beautiful son. He was covered in wires with lots of machines and was surrounded by doctors and nurses. Although it’s horrible to see your precious baby like that, you know that they are doing all they can to save your child’s life.
Davey coped really well on the ventilator and his oxygen levels remained stable so the next day he was taken to theatre. Doctors unfolded Davey’s diaphragm muscles and inserted a synthetic patch to prevent his organs from moving back into his chest. The operation in total took four hours and it was only during this time I stopped to think about the practicalities of our situation – as a family how were we going to cope while Davey was in hospital? As the fear began to sink in, a nurse approached us and said she had already found a place for us to stay. It was called Eckersley House. We were so relieved.
When I was discharged from the ward and went over to Eckersley House for the first time I was warmly met by Jane, the House Manager. We had a chat and she showed Paul and I around our ‘Home from Home’. Our room was immaculate and it was such a lovely feeling knowing that our two other children, Laila and Benji, would be able to stay with us too. I was instantly put at ease knowing that The Sick Children’s Trust were able to support me and my family so we could concentrate on supporting little Davey. The fact that I knew I was only minutes from NICU, and Davey’s little incubator, also provided such relief and meant that when I was away from the ward, I was not on edge thinking the worst could’ve happened.
During our stay at Eckersley House we met some amazing parents who helped keep us sane when we felt like the situation was getting too much. Even if it was just being able to have a quick cup of tea and chat about our day, those few minutes of feeling a little normality in a friendly, homely environment were precious and very much needed in our time of uncertainty. Knowing that the other families were all going through a similar experience to us instantly created an invaluable companionship.
Thankfully, after his operation, Davey continued to go from strength to strength and after two weeks at LGI we were discharged to our local hospital and then finally, six days later, we got to take our little boy home for the first time.
Davey is now six months old and he is doing amazingly well. His lungs have expanded to a normal size and his heart is back in the correct place. He is a very happy, beautiful little boy and you’d never know he had been through so much. As a family, we can never thank The Sick Children’s Trust and the lovely team at Eckersley House enough. Because of them, my family were able to stay together and we didn’t have to travel miles each day to be with Davey when he was receiving the critical care he needed. They really are an incredible organisation, we’ll be forever thankful.
Samileigh Bates, Davey’s Mum.