I have written a lot about Jamie, my son who died when he was three days old. I have written about my pregnancy and his short life, as well as life after babyloss.
At my 20 week we discovered that something wasn’t quite right with his stomach – a referral to the fetal medicine unit at the RVI confirmed the suspected stomach problem, along with a heart defect.
The rest of my pregnancy was a rollercoaster of emotions, hopes and crushing reality – some days I felt on top of it, others crippled me. I stopped work and focused on my two young daughters and on spending time with my bump – I have so many positive memories of relaxing with my unborn baby, of talking to him and of telling him stories.
I wrote a blog during this time, mainly for my sanity, to document what was happening, to remember it, to let it all out. I allowed my feelings to pour onto each blank page which meant I could function, I could parent, I could keep my shit together and feel less helpless.
When Jamie was born at the RVI his oesophageal atresia was confirmed immediately and he had his first surgery when he was 6 hours old.
His heart defect was confirmed the next day and a plan was put into place after his transfer to the Freeman paediatric intensive care unit – he needed surgery to keep him alive.
His heart surgery took place when he was 3 days old – it was meant to be keyhole surgery. I was going to say straight-forward but I’m not sure heart surgery can ever be described as that. His surgery became complicated, key hole surgery was abandoned, his chest needed to be opened and the hours ticked by. After 12 hours it became clear that we needed to say goodbye to our baby, he wasn’t going to be make it.
Our baby son died at 10.30pm – we asked the team to stop. Jamie had been struggling for hours, he was not going to live.
Minutes before we had sat in a small room with his surgeon, who had Jamie’s blood on his clothes and his shoes, and his nurse and we had told them we needed to let Jamie go rather then get him onto life support so we could say our goodbyes.
My heart felt like it was being ripped from my chest and the desperation and panic I felt consumed me. But we sat and waited to be told that he was gone. We were not expecting any miracles, we knew he was going to die. His nurse cried when she came to tell us, his anaesthetist struggled to hold back his tears as he came to reassure us that Jamie had not felt a thing, that he was not aware. And his surgeon said words he was probably not meant to say, he said he was sorry the surgery hadn’t worked, he was sorry Jamie had died. The words and emotions of Jamie’s team will stay with me forever, they have been a comfort.
We had been asked if we wanted to be with Jamie in the operating theatre when he died. Neither of us felt able to do that, to see our tiny baby boy with tubes and blood was not a memory we wanted and I am grateful we agreed on that.
And then we waited to see him, I don’t remember how long it took but we were moved into a different room and we waited for Jamie’s nurse to bring him to us. When she entered with our boy, wrapped up like a sleeping baby, I screamed a noise I couldn’t make again. And then I got to cuddle my boy – he stayed wrapped up because the tubes needed to stay in his hands, in his body and in his neck and I didn’t want to see them. Instead I was able to stroke his hair, kiss his face and just cuddle him.
His lovely nurse wanted to know if we wanted to bath him and get him dressed. We didn’t. We wanted to remember his body from before the heart surgery but we trusted her to look after him. I wish we had been able to spend more time with him but I couldn’t see his body like that.
After saying our goodbyes, I don’t remember leaving the hospital, I don’t remember getting home. I’m fairly sure exhaustion took over for me and I slept for a few hours.
We were at Longsands beach early, from sunrise we wandered and sat, cried and screamed. It felt like the place to be.
If I close my eyes I can feel the desperation of the helplessness and the pain of not being able to bring my child home – there is no preparation for this, no guidebook, just raw emotion and a pain I never want to feel again.
There is no right way to grieve, there is no right way to be after a week, 6 weeks, a year, 10 years, 15 years. Many of my posts are about sharing my experiences of babyloss, grief and recovery and these may be of some comfort to another family and to ease even just a tiny bit of the isolation of a grieving parent.