Baby Loss Awareness Week raising a lot of different conversations – and I think an important aspect of it is that babies die, at any gestation or age. Toddlers also die. So do children, teenagers and young adults. I don’t think there is ever an age in childhood or youth, when death feels more or less acceptable. It’s all a lost future, and a trauma that leaves people needing support. It is all heartbreak. Sometimes, in the baby loss world, those babies who die after the neonatal period and their families don’t fit the mould of the many wonderful charities and organisations offering support. There’s a limbo land that families can find themselves in, which isn’t right, fair or helpful. There are charities, like Our Missing Peace, working to bridge this gap and connect people to the right, bespoke support but we need to keep pushing and having the conversation so that families know where to turn to should they ever need it.

Please welcome Charlotte, and her son Saul, to the Diversity in Loss series…

Where do you go for support when you don’t quite fit in the baby loss community? 

With Baby Loss Awareness Week highlighting the Out of Sight Out of Mind report and the psychological support or lack of that parents receive following the loss of a baby I thought it the perfect time to share my experience of losing my 16-month-old son Saul. 

Saul tragically and unexpectedly died during the night on the 27th of February in my home a few feet from my bedroom whilst my other two children slept soundly. There was an extreme panic when we knew something was wrong, CPR performed on his nursery floor, ambulance crews arrived quickly but I knew it was already too late, despite this the crews continued to try to resuscitate and we were driven to our local A+E dept. I wasn’t allowed in to the room where Saul was in A+E but I had informed them that I wanted them to stop. We had by that time been trying for around 40 minutes and Saul was showing no signs of life. The hospital staff checked this with me three times. I walked in after and saw my beautiful baby laying there peacefully as if he were asleep. Because Saul was in A+E, the staff seemed unsure about what to do and waited for staff from other departments to come and show them how to take footprints. Saul was in resus so we were surrounded by other patients, doctors and nurses – looking back it wasn’t quite the private time you would want. I was being physically sick and trying to keep my shit together enough to answer questions. A few hours later I walked out of the hospital with a box and Saul’s blanket. We had to go home and face telling our other two children that their baby brother had died.

In the weeks and months after both my husband and myself have tried to access support in various guises but unfortunately our situation doesn’t seem to quite fit in. Saul was too old for us to be supported by pregnancy and stillbirth charities – although I will say we were welcomed to come along to our local Sands group but were told we would be the only ones who had lost a baby of that age and most of the other people who attended had lost a baby in pregnancy or soon after birth so it might not be the best fit for us. Unfortunately, Child Bereavement UK don’t have any groups for us to access locally.

One of our worst experiences of losing our baby and seeking help and support came from our GP. We had an appointment with them to see if we were ready to return to work. When we arrived in the room the Dr asked what we were there for. When we told her that our son had died and the circumstances around his death, she gasped and it ended the conversation. There was no question about how we were feeling, were we sleeping, coping, did we feel the need to talk to someone? Rather than the conversation starting it just ended – the only other question she asked us after that was how long do we need off work? 

We left that appointment feeling so angry, our son wasn’t acknowledged and neither was our loss or our feelings. My child that died is just as valid and important as my children who live, I don’t want professionals to shy away from opening up those conversations with parents and families and that is why raising awareness of loss is so important. In 2017, 3,200 babies were stillborn – that’s around 9 babies every day – and 6,608 babies and children under the age of 5 died – that’s more than 18 everyday (Child Bereavement UK). Baby loss is happening and more must be done to support families psychologically.  

It also led me to wonder why we were chasing and seeking support. Why wasn’t it offered? 

We have struggled as a family to find specific support and that extends to our other children. We found a local group who supports children who are bereaved but our son Buddy, who is 5 and appears to be most affected, is to young to attend the groups. 

So where have we found support? Apart from the obvious like our family and friends we have found support in the club no one wants to be a part of – The Baby Loss Club. We have connected with others online who don’t shy away from ‘those awkward conversations’ and who recognise your need to talk about your baby and include them in all you do. 

Baby Loss Awareness Week isn’t for those already in ‘the club’ – there isn’t a day or second that goes by that I am not aware of my loss and the missing piece in our family. I want to raise awareness for others – professionals, friends, colleagues – to break down the taboo of losing a baby, strike up conversation and debate and allow people to talk freely about there loved ones. 

For support following the loss of a child, please visit Child Bereavement UK or Our Missing Peace. For support for siblings, please also visit JOEL, The Complete Package and Winston’s Wish.

One thought on “#DiversityInLoss – Where do you go for support when you don’t quite fit in the baby loss community?

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