James was just 8 weeks old when he died.
I had no idea he would be anything other than a perfectly healthy baby at birth. I was 38 weeks pregnant when I was induced into labour as there were concerns he was on the smaller side. The nursery was ready. The car seat was installed. I’d finally gone on maternity leave. I was so ready to be a mother.
Then James was born in respiratory distress. He was transferred first to the special care unit and then shortly afterwards taken to the NICU because they just couldn’t stabilise him. My husband went with him and I was left alone. I didn’t know what to think initially. I just kept telling myself ‘he’s going to be fine because all my scans were fine’. He was so active in utero. I thought they’d bring him back down any minute.
But he didn’t come back. And he wasn’t fine. In fact, the doctor caring for him said James was one of the sickest babies she’d encountered in her 25 years of practice. She said then that he had just a 10% chance of survival, but we just tried to focus on the next step. They initially picked up that he had an issue with his diaphragm. He made it to surgery, and despite the anaesthetist warning us he might not survive it, he made it back, too. He was so strong! We waited for him to get stronger, but he just wasn’t responding.
He further deteriorated and they still didn’t know why he was so sick. It was decided genetic testing might shed some light on his state, and it did. It showed that James had an extremely rare gene mutation. He was only the 5th recorded case globally. It was a completely random occurrence – nothing that he had inherited from me or my husband. It was like we’d won the lottery – backwards. We were taken into that room, with a box of tissues between us, and told us there was nothing more they could do. ‘How he is, is how he is always going to be,’ they said. The only choice we had was to decide how long we wanted left with him – an impossible decision.
The next day we gathered together as a family and let him go. We let him find peace and comfort. In retrospect I know we were keeping him here for us when he tried to go so many times. All I could see at the time was my beautiful, beautiful baby but in reality, he was just so sick. I’m in awe of his bravery and strength. I couldn’t go through half of the procedures he did. It was just so unfair.
We created as many memories as we could throughout the time we were in the hospital – we sang to him, read to him, and brushed his hair – he loved having his hair brushed. After he was gone, we were able to spend time alone with him for the first time in his life. We bathed him. We put him in clothes and wrapped him up. We held him, took handprints and made memories with him. Then it was time to go. I can’t tell you how many times I ran back to kiss him, knowing it was the last time I was ever going to hold him.
More than two years have passed since that day. James now has a little brother – almost eleven months old. The day James died I made a vow that any future children we had would have his name, and so we now have Reuben James to love. A lot of the time I call him Reuben James, just so I can say James’ name out loud. Little things like that keep his memory alive in our hearts.
Although the pain is still everywhere, I love talking about James. Every opportunity I get to talk about him I appreciate because it brings him into the present and creates a memory. Every time his name is mentioned, it gives me joy knowing that he has been thought of. On his first birthday I was so surprised by how many people called or texted to say James’ name, to acknowledge the date and to say they were thinking of him and us. It was so touching to have him recognised like that. The last thing I want is his memory or his legacy to be forgotten.
That’s why the Say Their Name campaign resonates with me. It gives the community permission to talk about babies that are no longer here. These conversations may evoke tears but for me it is so important to feel I can freely talk about my son without the stigma attached to child loss, and I think this is a feeling shared by most bereaved parents.
Say Their Name Day is on March 25 – a special day to remember all of the little lives we have loved and lost, and support bereaved families.