As part of Sands 40th anniversary this year, we will share 40 stories by 40 parents, family members and friends affected by the death of a baby. Starting in June to coincide with Sands Awareness Month and our #FindingTheWords campaign, we aim to show the sheer number of people who are affected by the tragedy of a baby’s death, help other bereaved parents to understand they are not alone and raise awareness of the issues surrounding stillbirth and neonatal death. Visit our 40 stories for #Sands40 to view other blogs in the series.
Erica Stewart, Bereavement Support and Awareness Specialist, Sands:
I have been involved with Sands for 23 years. I started in the mid-nineties when there were just six staff working out of a basement at 28 Portland Place in Oxford Circus. First I worked as a volunteer on the Sands helpline for two years, then I became employed as Sands Publications Officer. In 2003, I took every Friday off to start my training as an Integrative Counsellor at degree level, which I completed in 2006 at The Mary Ward Centre in Holborn. This training changed my life completely, giving me a much deeper level of understanding and insight into grief after the death of a baby, amongst many other things.
During my time at Sands, I have delivered the Sands befriender training and the Sands IBC training; I have presented twice at the International Stillbirth Alliance Conferences in Antigua and South Africa; I have advised on books, plays and films where the death of a baby has been mentioned, including on EastEnders and Coronation Street baby death storylines.
I am proud of the work I do, and best of all I love the work I do.
I would like to pay huge tribute to Baby Shane, for without his existence none of the above would have happened.
Dear Baby Shane,
Tomorrow, 29 May 2018, it will have been 35 years since you died. Last week there was an advert on TV advertising a new hamburger, limited edition, until the 29 May they said.
The weather person said it’s going to be 29 degrees.
At this time of year the number 29 seems magnified.
I won’t go into work tomorrow in honour of you. I will buy your flowers, freesias, they look so pretty and have the most beautiful scent.
Does the pain lessen? No!
My grief has just found a place to settle inside me, but it will never go completely. Like a wound it can be disturbed, knocked like a scab and bleed again.
There are some things that I wish I had done 35 years ago. I wish I could have held you in my arms when you took your last breath. I wish I had bathed you and dressed you in a special outfit.
Things were so different back then and I didn’t have any control over what was happening. Leaving hospital without you was one of the hardest heart-breaking things I have ever had to do in my life. I am so glad that we came back to collect you and take you home.
At home I held you a lot and changed your nappy. I took you down stairs into the street and showed you the night stars. I read you a story while you were in your rocking cradle, one of the Mr Men books ‘Mr Funny’ I remember thinking, if anyone could see me they would think I was crazy, but now I realise that doing all these things were my way of nurturing you, my way of being your mummy.
Your sisters came upstairs to see their baby brother. They had visited you in hospital on the neonatal unit many times over the 8 weeks, but were only able to touch your little hands through the many tubes connected to you.
The day of your funeral arrived, and I knew I had to let you go. Your dad and I put you in your coffin and your dad screwed the lid down. I often wonder how we did that. You looked so still, so peaceful, I was no longer scared of death or dying after that. It hurt so much, but at the same time it was an honour and privilege. I remember thinking that there is such a thin line between life and death.
Your dad and I planned and led your funeral by ourselves. I asked everyone to wear white. I felt that this reflected your pureness.
It was hard after your funeral because I couldn’t nurture you or do anything for you anymore. Everyone else just carried on with their lives and why shouldn’t they, but my world had stopped and I found it hard to carry on as ‘normal’, hard to do the simplest everyday tasks. People couldn’t see my pain, my grief. I wanted to tell people about you, that my baby had died. Surely the world would stop for a moment, but it just carried on. That felt like torture! But I had to get on with life; caring for your sisters kept me going and in many ways kept me sane.
I had a strong urge to have another baby, not to replace you, but to fill my empty arms. It didn’t happen immediately, so I kind of stopped thinking about it.
Three years later I discovered I was pregnant again, and I was terrified that this baby was going to have the same heart problem and die. I felt totally anxious for the whole nine months, insisting on extra heart scans and check-ups.
Your brother was born and the doctor said he was fine. It took me quite a few months to trust that he was going to stay. I remember your dad and I poking him sometimes to make sure he was still breathing. The fear of having another baby die was sometimes overwhelming. As your brother grew up we told him all about you and showed him your memory box. You will always be included, you are part of our family, and will be for many generations to come. My grandchildren, who are your nieces and nephews all know about you. And they know that the work I do for Sands is because you existed.
You will always be loved and never ever forgotten.
Love Mummy xxx
15 babies die before, during or shortly after birth every day in the UK. We want to reduce this number, but we need your help. Support #FindingTheWords initiative now to help ensure a bereaved parent doesn't have to cope alone. Thank you.