Guest post: 'When my little boy died, I was given a leaflet. Where is the support for bereaved parents?'
Just over a year ago, Andrea Kerslake's two-year-old son Elliot died suddenly. In the midst of her family's devastation, Andrea expected there to be support available. Instead, the systems and processes she found herself dealing with lacked compassion and care.
Andrea has since set up a charity, Elliot's Footprint, in order to fight for better bereavement services. In this guest post, she shares her experiences and argues that bereavement support must be made more readily available.
Do read the post, and share your thoughts on the thread below.
Trustee of Elliot's Footprint
Posted on: Thu 20-Mar-14 14:01:09
(36 comments )
When I put Elliot down for an afternoon sleep on Sunday 3rd March and whispered the words "I love you EJ" in his ear, I never imagined they would be the last he would ever hear - that my little boy of just two-and-a-half years would never wake up. More than a year on, I still don’t know why Elliot died and I'm still chasing for a cause of death and an inquest.
When we received the worst news a parent can hear – 'your child is dead' – and sheer devastation shook my family, I, perhaps naively, thought that there would be support services available and ready to help. I assumed that the schools would know exactly how to support Elliot's brother and sister. But I have been incredibly disappointed, and my grief has been compounded by the lack of adequate bereavement support services and the lack of compassion and care within the systems and processes I have found myself in.
That Sunday began as a perfectly normal day, hectic and full of family life. We watched Elliot’s older brother, then eleven, play football and then frantically tidied up after his older sister Emily’s fifteenth birthday sleepover the night before. As usual Elliot was at the centre of the action, loving the attention from Emily’s friends and having a great time running around on the touchline.
But in the space of one hour I went from being a mum in a 'normal' family, to complete devastation. My world stopped - everything carried on around me but I was in a bubble. One minute I was snuggling my little boy in for an afternoon nap, the next I'm explaining to his brother and sister that Elliot isn't coming home. I went from making plans for his third birthday to having to plan his funeral.
I left hospital with a generic leaflet in my hand, totally desolate and with an immense feeling of isolation and fear. Everyone I came across thought someone else picked up bereavement support, but in reality no one did.
I left hospital with a generic leaflet in my hand, totally desolate and with an immense feeling of isolation and fear. Everyone I came across thought someone else picked up bereavement support, but in reality no one did. The waiting list for bereavement support where I live is anything up to 12 months.
I turned to the internet to find support and information, but instead found sites which told me our children were more likely to be bullied at school, that we were likely to get divorced and that our friends would drift away as they wouldn't know how to cope with our grief. When you're at your most vulnerable, and can't think straight or process information these are the last things you should have to read.
That’s why we have set up Elliot's Footprint. It’s still in its infancy, but we want it to be a gateway for other families to access information that can offer some help and hope. Every family who faces loss will have different needs, and I don't for one moment presume that I know what will ease someone else's pain, but I want to help fund and develop personalised bereavement support. For some parents counselling may help, for others it may be a chance to meet other families who have experienced the same trauma. It might be about finding connections for your children so that they can speak to other children who have experienced the loss of a sibling, and making sure that nurseries and schools are geared up to support them.
Since losing Elliot I have met many people from various professions in connection with his death, and we've been grateful for their sympathy, compassion and care. But, this care and compassion simply doesn't extend into adequate, accessible bereavement support, a clear Coroners' process or even the many stakeholders in Elliot’s case actually talking to each other. It is these things that have made my anguish even more distressing, and exposed the need for improvements. Losing my special little boy so suddenly was devastating enough, but to then have to chase for every scrap of information to find out why he died is so hard and exhausting.
I know that I'm not alone in this and that there are many mums out there who have also experienced this loss - I'm trying to reach as many of them as possible to find out the true extent to which a lack of support is impacting on families’ lives. If you have a story, or know somebody who does, please do share it on the thread below, or get in touch.
We can never take away the pain and devastation caused by the loss of a child, but I hope that Elliot's Footprint will be able to offer a gateway to good advice and support that may make a small difference and help families to start taking the steps towards rebuilding their lives.
This will help me take the loving spirit of Elliot with me on the journey to start rebuilding the lives of my family.
By Andrea Kerslake
I am so sorry for the loss of your beautiful little boy
Elliot's Footprint sounds amazing, what a wonderful organisation.
I'll try and write more later but I agree with everything you are saying
When my daughter was stillborn, I really, really needed a cohesive support system in place from the day we returned from hopsital without her - not a memories box and a SANDS leaflet (amazing as SANDS are)
The individuals were wonderful and well-meaning, but it didnt come together as it should and I found myself reaching out to my doctors, midwives, GP and counselling supports, frantically trying to set up the support I felt I needed. It was hard work and I dream of a seamless 'pathway' for parents that would involve a programme of sorts that would see them being given a proper programme to help them navigate their way through the grief - a person who phones you the day after you get home, a home visit at regular intervals, counselling timetabled in etc etc
Sorry for the ramble, am on the bus and will try to write more coherently when at home!
I am sorry for your loss. Good luck with your venture, it is important work
I am so sorry for your tremendous loss. Your lovely boy, ELLIOT
Our story is different although it has the same crucial element, our child is dead.
My daughter was ill for two years. Our lives revolved around her treatment. We lived in the hospital with short breaks at home. I barely saw my sons and my husband. Life was a mixture of intense horror and terrible boredom all surrounded in dreadful guilt for letting down my sons and not being able to make my daughter better.
Then she was terminal and we were sent home.
Then she died.
And she was no longer a patient so we were no longer the responsibility of the hospital or the community nurses. Our child was no longer alive so the people who had become our daily support left our life overnight.
We were alone.
Some people have to walk in to a hospital with a live child and leave without them.
Some get a knock on their door and are greeted by solemn faced police officers with a terrible message.
Some, like us, sit and watch as our child dies slowly in front of us.
But we all need help. There are some support groups but not enough to make them accessible and appropriate for everyone who loses a child.
And lots and lots and lots of us lose children.
Message withdrawn at poster's request.
So sorry for your loss. My story is slightly different, we had to terminate a pregnancy 10 years ago, too many complications for our little one to survive. After the confusion and upset of the whole process, I had a terrible long labour and of course, afterwards went home without my baby boy. My husband and I received one counselling session each from a midwife. I still think we could do with more counselling and support. Often I get very low and upset still, feelings of guilt are huge, even though I have two beautiful boys now.
I would very much support better services and would help if I can.
I'm so very sorry for your loss
What you are doing is a very, very brave and strong thing and will hopefully help many other parents and families.
I'm local to you by the looks of your website; if there is anything I can do to help? I only work part time, so am available generally during school hours. PM me if I can help in any way.
Good God - how absolutely dreadful. I am so very sorry for the loss of your beautiful Elliot and the fact that it has been compounded by the lack of support you've posted about
I have no words of wisdom but just wanted to say that you and your family are very much in my thoughts. I'd like to donate if possible so will read in more detail later and hopefully work out what to do
So sad and so true, we also left Tilda with only a leaflet, thankfully for us it was a Lullaby Trust leaflet x The support for our family from local services has been appalling, in fact non existent x It is going to be part of Matilda Mae's legacy too to improve the care for bereaved parents and siblings x www.edspire.co.uk
I am so sorry for your loss. Elliot was gorgeous.
This sad event happened to my family many years ago when I was young and a sibling suddenly died.
I don't really know but I am assuming there was little or no support for my parents or they choose not to take it.
Either way, I had a totally distorted upbringing with everyone around me utterly broken and not speaking of it. Family broke up, mother told us not to mention it. No one mentioned it to us. It's like a massive elephant in the room. Always will be as im too afraid of any reaction that might arise from raising the subject.
My point is that with good support from family or others my life might be totally different now.
I really support a charity that supports families where a child dies. It really is ammegedon to a family. The effects just never go away.
Not sure where you are based. At my daughters school we raise money for a lot of different charities.. one is a fantastic new local charity: The Havering Bereavement service
Which has been of great support to parents and children....
To be honest the best support I got was online, talking to other mothers who had been through the same thing. After about two years I asked my GP for a referral for psychoanalytic psychotherapy. I was on the waiting list for about a year but it was the best thing for me.
I have to say that my daughter who was 7 at the time of our bereavement fared worst. It all came out in her teenage years, by which time it was hard to get her proper support. School were useless and basically suggested that it was all "my stuff" - they couldn't quite understand or believe that my daughter was suffering from PTSD.
A truly amazing legacy for Elliot. I agree completely about bereavement services for parents. They are poor and so varied.
Losing a child is something that I still struggle to find the words to explain to others. I think that what you are doing is amazing. It can be incredibly isolating in addition to the intense sadness and all the other emotions too. Providing services to bereaved parents is a truly amazing thing.
You are amazing. I am so sorry for the loss of your beautiful boy.
My brother is called Elliot and we call him "EJ" too. He was a blonde as a child also.
I'm so sorry for your loss and think this is such a necessary cause. Will be donating.
I have suffered the stillbirth of identical twin girls back in Sept 2008. I joined SANDs and have made good friends through them. We have become a close group of very supportive, loving women without whose support I would have struggled.
Two and a half years ago my then nearly 16 year old eldest son was diagnosed with an aggressive malignant brain tumour. I have watched him go through so much horrific treatment, helped him as much as I could. Watched as the disease slowly took him piece by piece and watched him die three weeks ago. I am struggling and I do not know where to turn. I do not know who I am any more and how to help my surviving son. I have spent the last two and a half years trying to help my son live but now he has gone and I don't know what to do.
I am very sorry your loss of little Elliot and very sad to hear how, in your time of greatest need, you felt abandoned.
Setting up Elliot's Footprint sounds like a truly wonderful way to honour Elliot's memory and it offers hope that other families who will suffer the loss of a child will have somewhere that they can turn to to support them in their grief.
I admire you and wish you the very best with this very important venture.
Oh minmooch I hope you find the support you need. Sorry for your losses.
Our daughter Aillidh died of pneumonia following stem cell transplant for treatment of acute myeloid leukaemia on 7 July 2012, age 9.
ALL the support we have received has been online.
We are rural. So no support in real life.
Our surviving children, the elder, who was 6 at the time her sister died, had about the worst play therapist in the world, and our son fared marginally better.
We got a leaflet and a couple of cars from the hospital's bereavement service, offering 'support', all in the same hospital where our daughter died.
Expat, what could someone like me, a random on the internet (also in Scotland) do to help you, or anyone like you, and your family? Is there a charity you'd want me to support, for example? I could offer you as much hugz online or bare my arse on FB if it would help, but what would actually do any good, if anything?
min - I'm so sorry for your losses. I have no good or comforting words but just wanted to offer you a hand to hold.
Min im so sorry to read that, you sound so incredibly sad. How can you access help?
Andrea that is such a brave post and i wish your charity all the best.
These stories all touch me deeply - I cannot imagine the pain of losing a child. That you have created so much positivity from it is more brave than words and I hope you and your families are able to take some comfort from knowing that we are thinking of you.
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