- My Story
As some of you may already know, our beautiful baby boy, Finley, was born with a life-threatening defect called a Congenital Diaphragmatic Hernia. Chances are, you have never heard of it. We hadn’t either, until our 20 week scan. Like any expecting Mum, I felt slightly apprehensive as the scan started, but felt myself start to relax as a little heart appeared pumping away on screen, and the sonographer talked us through other various parts of the body. She then asked us to go for a walk in an attempt to get the baby to move, as she couldn’t quite see all angles of the heart. We didn’t think too much of it and happily wandered around with hot chocolates. When we returned, the scan resumed. After a few minutes, the sonographer very gently explained that she could see that our baby’s stomach was in the chest cavity, and his heart appeared to be shifted over to the right, which was why she could not see the correct angles in the initial scan. The only explanation for this was that our baby’s diaphragm had not formed correctly, allowing the stomach to deviate up. Despite being told this, I naively remember thinking a hernia didn’t sound too major, but the look on the sonographer’s face said otherwise. Is it serious? I asked her. I’ll never forget the pitiful look on her face when she answered ‘Yes Claire, it’s very serious.’ It quite literally felt like the world had stopped spinning.
We hadn’t even left the hospital before I started the usual dreaded Google search. All sorts of terrifying and confusing information came up, but very quickly we found CDH UK. We couldn’t see through the tears or breathe through the fear of what we had ahead of us. Our worst case scenario was that our baby wouldn’t survive more than minutes after birth, our best case was that our baby’s lungs were strong enough to be supported, a major operation and months in hospital. Our little baby had a 50% chance of survival, and we had no idea of what side of the coin fate would land on until after he was born. The only thing that got us through the rest of the pregnancy was hope. I never truly understood the strength of that emotion until after our diagnosis.
Fast forward to today, and I can’t even type the words ‘we were one of the lucky ones’ without tears. Our little boy fought with all his might from the minute he was born. We took him home after just 41 days in hospital. He is amazing and we thank our lucky stars every day.
It breaks my heart when I hear of other expectant parents getting a CDH diagnosis. It’s such a scary and cruel condition. Part of the fear is the unknown. It occurs in approx. 1 in every 2500 births, yet there is so little knowledge of it, even my midwife didn’t know what it was. That felt so scary to me. It’s so important that there is better awareness and funding for CDH. CDH UK is a fantastic charity providing factual and supportive information. They helped me throughout my pregnancy, and continue to offer support and advice when needed.
So to show our support, Finn*, my lovely best friend Lowri and I are taking part in jog 4 June. 26 miles to raise awareness and as much money as we possibly can for this very worthy charity.
Any donation will be so appreciated, nothing is too little!
I know we are all inundated with charity requests daily, so a big thanks in advance to anyone that donates. Love team Finn x
*Finn will of course be pushed around in the comfort of his pram. But I’m sure he will be offering us babbles of encouragement the whole time!