Joel’s Story

We recently put out a request, asking bereaved families to share their stories. We know this is not always an easy thing to do but what shines out from Debbie’s story about her beautiful son, Joel is how her love for, and relationship with Joel has never diminished over the years and that he is very present in his family’s lives today.

We found out we were expecting our 6th very much wanted baby in the autumn of 2006. On 23rd December 2006 we went for our 20 week scan and discovered we were having another beautiful son and that our unborn baby boy had a life threatening abnormality, a Congenital Diaphragmatic Hernia.

We named our son Joel and after explaining to our other 5 children about Joel’s condition spent the next 18 weeks finding out everything we could about this condition and hoping and praying our baby son would survive. At 38 weeks I was induced and after 12 hours Joel made his entrance into our world. Joel was taken immediately to the neonatal unit and placed on a ventilator as he was unable to breathe on his own. Joel was beautiful 8lbs 8oz with lots of blond hair. He looked very much like his eldest brother. After a very short time Joel had started to deteriorate and was placed on the oscillating ventilator and we were advised to have Joel baptised if we wanted to. It all seemed so surreal just a short time after giving birth we were having a baptism. We named our son Joel Archie Jed Abel all the names having special meanings.

Overnight Joel suffered a collapsed lung and was in a critical condition. All the time the neonatal team were in communication with Great Ormond Street about Joel going on ECMO but there were major concerns he wouldn’t survive the journey and we wouldn’t have been able to travel in the ambulance with him. We had our parents bring our other children up to meet their baby brother. Someone kindly took a photo of us all together with Joel, the only one we have of us all together. We were then allowed to hold our gorgeous baby boy for the first time. Despite a very brave battle and while cuddled in our arms, our beautiful baby boy left us aged Just 17 hours 48 minutes.

We miss Joel every minute of every day. Even 18 years later there are days when the grief is just overwhelming. I always say I have 6 children and Joel’s photos are on display in our home along with our other children’s photos. My grandchildren know about their uncle too. I love talking about him and am so, so grateful to anyone who allows me that opportunity and those who say his name.

We have done many things in Joel’s name. We bought a ventilator with his name on and every year we ask for children’s books on Joel’s birthday which we then donate to St George’s children’s wards and the school he would have gone to. We have donated over 4000 books now. These all help us know that Joel will not be forgotten. Last year some of Joel’s story was included in a book called A Gift of Time. My hope is that something I may have included in that may help another bereaved mum.

It’s not easy being a bereaved mum but I’d do it all again to spend those few hours with him.

I am forever grateful to the NNU at St George’s for everything they did to try and help Joel and for the care and support they have given us. The neonatal memorial service means a lot to us. We still attend all these years later. It’s Joel’s afternoon and although it makes me cry hearing his name read out, it is so incredibly important as it’s the only time we hear his name read out by anyone. And when I hear it, I feel so incredibly proud to be his mum.