On Friday I was pleased and honoured to attend the first Bereavement Support Study Day as a speaker to help Health Professionals within the Yorkshire Region and surrounding areas support families following the sudden and unexpected death of a baby or toddler.
I was immensely proud of how the day went knowing that your money raised through the ball funded this day that can help all professionals involved with families following the death of a child.
There were various speakers during the day myself included that spoke about the process and impact that such a death can have on a family and helped the delegates understand the procedures in place if that happens and how The Lullaby Trust fits in for both them and the family.
The day was a little emotional for me, I told my story to a room of about 50 health professionals and some of it for them wasn't very complimentary as you'll read shortly however I was given some fabulous feedback and I hope to work with them in the future to improve this going forward. I got to meet the fabulous Sheila McGovern and Dr Marta Cohen again, the amazing lady who is the Bereavement Support Coordinator at the Sheffield Children's Hospital Bereavement Suite and the paediatric pathologist who looked after both Alexander and us after his death. I have said it before and will again that these ladies and their team at the Children's made an awful situation so much easier to bear and I'll admit I cried it's been nearly 7 years since I've seen them but their impact on me was huge.
This is the speech/story I told them :
My son was 17 months old when he died suddenly and unexpectedly in his sleep one February night in 2007, the events and people I met in the days and weeks that followed I will never forget!
Hi My name is Nicola and I don't usually start my introductions quite so openly but I've made an exception today as you are the people that families like mine remember in the midst of all the chaos and tears. I was 28 when Alexander died, not a new mum and I have never smoked or taken drugs although I do socially drink.
It's sad to say but having spoken to other families and shared stories everyone's experience is so very different, ours in my opinion, is one of the better ones. There are still areas in which we feel let down but on the whole thankfully, we never once felt under suspicion at any time. I know even in the 6 years since Alexander died the procedures and guidelines have changed and evolved for a sudden infant death to improve them for everyone involved.
My first contact with any kind of professional on that horrific day was the call handler, the rapid responder and paramedics who answered my cries for help, I don't remember interacting with them after they arrived preferring to leave them to their job in the vain hope they could save my baby. I do however remember arriving at A&E and dawdling, avoiding what I felt was the inevitable. I looked into the back of the ambulance waiting there and saw the sadness in their eyes, their faces said it all to me I thought what a terrible way to start a Friday morning shift.
At the hospital doctors and nurses cared for us brilliantly, we were given time alone with Alexander, they never rushed us and we never felt at any time we were imposing and it's only a very vague memory but I do hazily remember there being a police officer outside but I never once felt threatened, to be honest I didn't realise he was there because of us.
I have other children and Alexander was a twin. Arriving home was a very painful experience having to face a sea of expectant faces from family who had gathered to support us and each other, telling my children that their baby brother was never coming home and we didn't know why and watching our surviving twin lost and lonely was heartbreaking.
I know we were given leaflets about SIDS and FSID as they were then at the hospital and we got a vague idea of the processes that would follow from them but I suppose we just went with the flow wanting to do all we could to aid everyone in maybe providing us with an answer.
We had contact with the GP who came out to see my other children, he gave them a check up to give us peace of mind I suppose and Harrison, Alexander's twin was given a more thorough examination back at the hospital. I suppose it may have given us a little reassurance to know that the boys were well but then so was Alexander when we put him to bed and he died, I think that is the hardest thing to deal with. Healthy people don't just die for no reason especially babies but it appears that they can and do!
Our contact with the police was a positive one really considering the circumstances, the detectives that came to see us were thorough in their explanations, gentle and kind allowing us the time to gather our thoughts when we needed to. I suppose it could have felt a little intrusive but it didn't, they were friendly and empathetic, easy to talk to and fantastic at communicating with us through the whole process right through to the coroners hearing. Perhaps this was helped by the presence of my husbands best friend who is a police officer, I suppose he was like police liaison but my gut feeling says that the process would have been the same with or without him.
We are lucky in Yorkshire that we have The Children's Hospital and Alexander was taken there from Barnsley to be looked after in the bereavement suite. It may sound strange to say he was being looked after but that is exactly how we felt. The first contact with Sheila was reassuring, this was something I had never done before but the team made me feel as though he was important to them, not just a body but a little boy, our little boy. I remember arriving one morning and chatting to Sue and Sheila and them saying that they had taken Alexander's prints but that he hadn't made it easy for them and they were covered i ink. It made me smile to know that he was making his mark and that they knew just how cheeky a boy he was. Thank you is never a strong enough word in my opinion they looked after my whole family and let us all say goodbye in our own way in our own time, looking back it's a time I cherish I'm so grateful to the whole team for their support and guidance, I often make mention of Sheila and Dr Cohen, they are names imprinted on my soul.
The area I feel most let down by is my Health visiting team, to be honest I'd never really had much contact with them other than the usual booking in visit after the babies arrived and regular weigh ins but after Alexander died I would have expected them to be in touch to offer support or advice or even to let me know about The Lullaby Trust or FSID as it was then but they didn't. Since this happened to me I know that HV are an integral part of the CONI scheme but it was up to me to read those leaflets handed over in the hospital and find the information out myself.
Communication is the biggest fault here, I have gone on to have another son in October 2009, Joseph was born 4 years and 9 days after Harrison and Alexander so I knew he would be hitting milestones at the same time of year they did, he would also get to 17 months in the Feb. During my pregnancy care (which I cannot fault) I had fears about this baby but I was never sure if my midwives knew and I feared if I brought it up that I'd be dwelling unnecessarily but my main concerns were for after he arrived.
I know about CONI (The Lullaby Trusts Care of Next Infant) scheme but it was never made any mention of and as I have my own monitors I felt ok to be without the scheme but it would have been nice to share my concerns with my health visiting team and have the reassurance that he and I were doing ok. I didn't expect our HV to have all the answers but it appeared they didn't know about Alexander and I'm stubborn I didn't feel it was my job to pour it out to them they should've known. I know this is not true of all HV I know many mums who felt their HV was a great support.
Losing a child puts you in a terrible situation, one where you want to shout and scream about what happened and that it's not fair, why me but it doesn't help and certainly does you no good so I decided pretty much from the offset that we would do all we could to get an answer to our questions. This came in the form of fundraising.
I started Alexander's Charity Ball in 2010 and have held one very February since that first one, raising money for The Lullaby Trust to fund research but also support those families who are in the same position as us. Over 300 babies a year are still dying without cause and it may not seem many but it's almost one a day and that's one too many.
For me ACB is my positive from the most horrendous nightmare, Alexander will never be forgotten as long as I'm fundraising in his memory and then maybe his death wasn't quite so meaningless. The support I've received from friends and family is fabulous, they have offered numerous shoulders over these 7 years and have encouraged me when I've felt there was no hope. Even people I have never met are so touched by our story that they feel compelled to help and the Ball is their way of doing that be it prizes or sponsorship or attending. I've think I've created a little bit of a monster really as we've had to move venues twice now to accommodate the growing number of people interested. Our guest list has gone from 200 in the first year to 520 for 2014.
The Lullaby Trust has been a constant through all of this and whilst my main contact with them is through fundraising I've always known they were there if I needed them. I'm proud to be involved in such a great charity and through the power of social media I get to see that other people think that as well. I would do anything to have Alexander back but I know that will never be, so fundraising and working with the Trust helps me to create a positive from my tragedy. I'm looking for answers and without funding for research this will never happen, if I want answers I need to work hard to ensure I get them. Francine Bates the charities CEO has pledged that we will reduce SIDS by half by 2020. This years figures show very little improvement in numbers and so it proves that we need to step up the campaign more, spread the message about Safer Sleep this where people such as yourselves can help.
In 2012 I made the decision to become a befriender for The Lullaby Trust. I felt so very lucky that I had friends I could call on at any time who would listen to me cry and shout and moan if I needed to and it got me to thinking that some people don't have that.
Befriending is not counselling it is merely offering a willing ear to someone in need, the opportunity for someone to talk to another person who knows exactly what it's like, sometimes it's a one off and other times it can be longer term relationship. It's not easy to hear these devastating stories and it does often make you relive your own but if I can help then I will. It's not a huge commitment to offer an hour or so out of your time every few weeks.
Families in my situation will never forget those who helped and those who didn't, all those faces I saw will stay with me forever a forever part of my life and story as Alexander is. The impact of your actions will have a lasting impression and it can't be easy, I never expected anyone to have all the answers but a little bit of empathy and a friendly face goes a very long way.
My journey over the last 7 years is all about creating a legacy for Alexander, to ensure he is never forgotten and to find a cause for his seemingly meaningless death. I'm proof that SIDS is still ripping the heart out of families and if by telling our story over and over helps save one baby or supports one family then this is more than worth it.
I was approached by the ambulance service to offer the opportunity to maybe find and speak to the 3 men involved that morning, I think the only thing I could say is Thank You and I asked them to say that for us if they do indeed know the men involved there is nothing I would change about their actions that day.
Health Visitors from the Barnsley area also spoke to me and we discussed me maybe talking to them about what happened and tying to work out a happy medium of contact for other families like mine. I know they are a busy group of people but there can't be many like me in the area that have lost a child and is it so hard to expect, that someone who takes such a great interest in the health and well being of your child when they are alive, does so after they are dead.
I could tell you so much more about the speakers and events on the day but I will finish by saying I'm amazed at the response from those in attendance and I hope going forward that these study days can continue but this can only happen if the funds are available to do so.
Welcome to our blog I will try as regularly as I can to keep you up to date with The Ball, The Charity and any other news !