We are very much at the beginning of our journey through understanding SIDs and what it means for our family. The question we ask ourselves continually is ‘why?’
Why us? Why Elva? Why on holiday? Why at nearly 7 months? We torture ourselves with the whys and what ifs and go over everything about that evening and next morning thinking what we might change. The truth is, I probably would’ve done everything exactly the same.
I would have still put Elva to bed in her travel cot. I would’ve checked on her before I went to bed and not worried throughout the night. She was no longer sleeping in our room at home and even if there had been room for her in our room, we would’ve still put her in her own room. That was normal for us and normal for her. She had stayed in travel cots before when we went away.
Elva slept in a grow bag, feet to the base of the cot, no loose blankets and on her back. Sometimes, she rolled on to her side as she was at the age where she could roll. She could hold her head up and she could sit up. If she was on her front, she could push up on her arms. She was strong. We did not smoke. When I found her that morning, she was on her back. She had nothing covering her face.
The Lullaby Trust is the main charity I have found providing advice and support to those who have lost a child through SIDS. They promote safe sleeping as their main campaign. Whilst I think this is hugely important, it is something I am conflicted about. Elva was sleeping safely without any of the risk factors yet she still died of SIDS. Campaigns around ‘SIDS prevention’ also make me feel a bit angry – it suggests Elva died of something that was in my power to prevent. The guilt that puts on a parent is horrendous.
New research from Australia now suggests there is a biological factor contributing towards SIDS. This certainly makes sense to me because if you eliminate all the environmental factors yet your child still dies, there has to be an explanation. The theory is that babies who die of SIDS have a lacking of a particular protein in the brain. With screening, in the future, it may be possible to identify those children as risk.
We are also taking part in The Lullaby Trust’s new research project looking at results from new born hearing screening tests. We have just signed up so have no further information yet but we are keen to take part in anything that may help determine a cause, and therefore, potentially, a cure.
Knowing why Elva died will not help us really. She will still be gone and we will still be devastated. But to feel like she ‘just died’ with no reason is hard. It brings with it guilt, confusion, anger. To have a physical reason will take some of this away. Maybe.
As it is, we do not know for sure that Elva did die from SIDS. That’s what we’ve been told to expect but we are still awaiting the results of the inquest. We don’t expect it to say anything else though.
We have a long road to travel through this grief and at the moment, the not knowing why feels like a road block on our way to starting to heal.