Young Sudden Cardiac Death: Sibling Grief

Young Sudden Cardiac Death: Sibling Grief Editor Alison Cox MBE, CRY Founder and Chief Executive Sub-Editor Lily Burke, CRY Bereavement Support Prog...
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Young Sudden Cardiac Death: Sibling Grief

Editor Alison Cox MBE, CRY Founder and Chief Executive Sub-Editor Lily Burke, CRY Bereavement Support Programme Manager Produced by Cardiac Risk in the Young (CRY) Unit 7 Epsom Downs Metro Centre, Waterfield, Tadworth, Surrey KT20 5LR Web: Phone: 01737 363222 Fax: 01737 363444 Email: [email protected]

With thanks for their contributions to: Michael Burgess OBE Dr Mary Sheppard MBBCh FRCPath First edition - 2012

Grieving Grieving is not something that can fit in to a specific slot. Sometimes there can be a great deal of anger about what has happened. Sometimes trying to cope with the feelings of other family members can exacerbate the grief you are trying to come to terms with. Sometimes it is difficult to understand and accept that men and women can grieve in very different ways. Sometimes it is easy to forget that children need special attention. At this time their needs can so easily be overlooked. Sometimes family members literally wonder if they are going mad with grief and are fearful of sharing such thoughts with others they love. Sometimes there is a terror of letting family members out of sight and immediate control, in case the same thing happens again. Sometimes there is the knowledge that the condition that has been diagnosed may be inherited, with all the serious and ongoing implications. Sometimes you will need to talk things through with a professional counsellor and sometimes you might crave to talk to another person who has suffered in similar circumstances to your own. Each person will feel the need to cope with their loss in a different way.

Joan Hillier - CRY bereavement supporter “It was an honour to be part of this first Sibling’s Support Group. As a mother and a CRY bereavement supporter, it was very revealing to hear their feelings of isolation and loneliness following the death of their brother or sister and their need to support the whole family in their grief.” © Cardiac Risk in the Young

Contents Foreword............................................................................................................... 2 Thoughts and Feelings - Extracts from the Stories............................................... 3 Siblings’ Stories..................................................................................................... 4

Richard’s Story by Joanne Bradley......................................................... 4

Sarah’s Story by Julie Caston................................................................. 6

Nolan’s Story by Michelle Foley.............................................................. 8

Martyn’s Story by Charlotte Henderson (Luckett)....................................10

Anthony’s Story by Dawn Iverson........................................................... 12

Gareth’s Story by Sian Regan.................................................................16

Simon’s Story by Vanessa Tardif.............................................................18

Stuart’s Story by Ian Tocher.................................................................... 20

Kevin’s Story by Michele Wilson............................................................. 22

Simon’s Story by Katherine McNamara.................................................. 14

The Role of the Coroner Following a Young Sudden Cardiac Death.................... 24 The Role of the Expert Pathologist Following a Young Sudden Cardiac Death.... 26 27 The CRY Centre for Cardiac Pathology................................................................... About the CRY Bereavement Support Programme............................................... 29

The 10 young authors of these stories:

© Cardiac Risk in the Young 1

Foreword The stars of this booklet on Sibling Grief are the young authors of these 10 stories. Their courage in articulating their feelings about the impact on themselves of the inexplicable, instant, sudden cardiac death of their apparently fit and healthy brother or sister has not been published before. After such a catastrophic event siblings are often sidelined, shielding their parents from their own torment whilst trying to fill for them the gap left by the dead child. Dealing with the loneliness of isolation, and others not understanding the deep personal issues the death exposes within the immediate family group, is compounded by their fear of making things worse if they made their voice heard. These stories express how they coped with: the catastrophic effect that reverberated through their family; how the expectation of having to take control feels; the terror of wondering who might be next; their grief being dismissed; finding themselves invisible; having friends too young to know how to cope with the impact of the death of a young person; the legacy of loss of a relationship still maturing; witnessing the agony of their parents suffering; wondering if mum and/or dad would have preferred them to have been the one who died…. Our first Siblings Bereavement Support Day in November 2011 gave those that attended an opportunity to share their tragedy with others that immediately understood whatever feelings they needed to express, and which had been buried for so long. This booklet was inspired by their desire to help other affected siblings feel less alone and perhaps contribute to family and friends’ improved understanding of the complex issues that affected them, and which they have so readily shared in this booklet - in spite of their tears.

~ ~ ~

Taken from CRY’s Bereavement Support leaflet:

The death of a seemingly healthy child or young adult is so out of order with the sequence of life that its effects are devastating. It can be hard to believe that this weight will ever be lifted from you. Grief affects not only the emotions - other consequences can include exhaustion, feeling sick and not being able to eat or sleep. These reactions are completely normal at times of intense stress and shock. It could be important to talk to someone about your feelings, no matter what they are. It is not always easy to do this with people who are suffering from the same loss. Talking to someone outside your immediate family is often the most helpful way forward. These feelings can go deep inside. If you bottle them up, thinking you have them under control, they will probably resurface later. Expressing such feelings, recognising them and thus including them in your life can help in your life’s journey to reconstruct a world that you know will never be the same again. Alison Cox MBE, CRY Founder and Chief Executive 2 © Cardiac Risk in the Young

Thoughts and Feelings - Extracts from their Stories Everyone asked how mum was. How mum was coping. How awful it was to lose a child. All the cards the phone calls and visitors were for mum. Nobody spoke to me. I remember someone whom I’d not seen for a while asking me, on Facebook, how I was. I told them, and never heard from them again. I’ve since learnt how to mask my feelings a bit better. It’s like you are all trying to outdo each other on how strong you can be for each other whilst, inside, you are really not coping very well. It’s like grief is ‘the elephant in the room’! I wouldn’t talk about the funeral.  The first thing people said was, “How are your Mum and Dad?” Siblings hurt too. Losing Nolan was not just losing a brother but losing my best friend, my security and the person who helped me through bad times. I had never felt so alone. Where was my brother? Where was my best friend? I wanted to talk to Kevin – he would understand how I was feeling. I didn’t want to be at my brother’s funeral. I took the role as family mediator, counsellor and organiser. I think the family just let it happen that way. Everyone asked, “How are your Mum and Dad doing?” and I felt like screaming inside “what about me?” . . . selfish? I felt my heart break as we waited for that plane home – a sharp, physical pain like I had never felt before, and I knew it would never mend. How could I go on when I had a life sentence to live without my gorgeous little brother? I felt it had to be me who made that phone call. When Dad answered I checked Mum was with him. He sounded so cheerful all I could think was ‘when I have told you this I can’t take it back’ and everything will change. In our busy, increasingly secular, consumer-orientated lives there seems no clear way to deal with death and its aftermath. No established patterns for bereavement and grief, particularly when the person is young and death is sudden. Nothing prepared me for this. I would never have thought that ‘my little brother,’ the youngest in our family, would be the first to die. I think of our lives as children growing up and being so close, never knowing what the future held. I am left with a feeling of trying to make the most of every day. All stories have been approved for publication by family members mentioned.

© Cardiac Risk in the Young 3

Richard’s Story by Joanne Bradley My brother Richard was 26 years young when he died suddenly at 5.30pm on August 9th 2004. That’s when our lives changed forever. Even now, putting pen to paper is so terribly hard and the tears have already started. He was very fit and we were thrilled and proud that he had passed a recent rigorous fitness assessment process to enter the Police Force. His greatest achievement though was having his first child, Jack. Richard was found dead at home by his partner, Emma, with Jack crying on his chest. He looked as if he was asleep. I am a Paramedic and was off duty when Emma hysterically told me that the paramedics “have used that shock machine on him.” I was able to speak to the crew .... I knew that the prognosis was poor. I rang Dad in Dubai, as my friend drove us to the hospital, thinking about funeral arrangements and which family members needed to be called. It was strange being there as a relative and not a member of staff. I kept seeing people I knew and was taken to the relatives’ room where Mum and Emma waited. The next few hours were a blur and, even though I was used to that environment, seeing him on my own before I left was an image I can never shake. He looked so peaceful whilst I held his hand and talked to him about silly things. The next few days seemed to be endless phone calls and crying. I was the Executor for his Will and felt that everyone was relying on me. I felt for many weeks, months and even years after Richard died that I had to be strong for my parents, Emma, and Jack. I took the role as family mediator, counsellor and organiser. I think the family just let it happen that way. Everyone asked, “How are your Mum and Dad doing?” and I felt like screaming inside “what about me?”... selfish? In the early days we talked and it seemed OK to ‘cry all the time.’ Months come and go. First anniversaries of Christmas and birthdays are hard. Then it felt sometimes like everyone outside the immediate family started to forget. People say ‘time is a healer.’ It helps take the rawness out of the pain but after eight years I still have ups and downs and dark times. We don’t talk about it as much, as everybody is frightened of upsetting each other! I think of Richard all the time, more often with a smile now than tears. My husband has been a tower of strength, and supplied me with cuddles, hugs and wine. He also seemed to know when I just needed a moment to myself. But, as my life moves on new emotions arise. It is small things, which may seem insignificant to some, that can still cause such pain. CRY’s Sibling Bereavement Support Day was really amazing as it enabled us to openly talk about the effects of sibling grief, and we all seemed to feel the same. There was a common theme of feeling isolated from parents who are grieving, and having to put on a brave front. Being in a room with other bereft siblings was a mix of emotions - sadness, relief, comfort, understanding, strength and liberation. 4 © Cardiac Risk in the Young

I had a lot of involvement with Richard’s funeral and sorted things out with Dad as Mum went to pieces. Trying to decide on hymns was stressful, (Richard didn’t like them) as was choosing a photo for the order of service. Over 250 people attended the wake I had arranged at the pub he ran. I hope we did him proud. I felt very calm, almost numb, during the funeral. We travelled there together and I managed to read a beautiful poem called ‘My Little Brother’ without faltering. But I don’t think it had sunk in. It felt like I was playing a part. At the wake everybody kept asking me about Mum, Dad and Emma. I remember feeling angry, and guilty about feeling seemed to ask how I was, as if I had to get on with sorting things out. People said things would get easier after the funeral, but I just couldn’t accept what had happened. I remember the exhaustion, not wanting to get out of bed, and going around on auto-pilot. Prior to the Inquest I thought that as an experienced paramedic, and being used to Coroner’s Court, it would be OK. But on the day I was tearful, physically sick and couldn’t stop shaking. It was Coroner’s Court where we first learned of CRY and felt some comfort but were frustrated that no cause of death - just natural causes – was given. Richard’s death has had a huge effect on our family. Mum and Dad seemed unable to speak to each other unless I was around to mediate. It created a massive wedge between them as they were both grieving in different ways and I rang two, three times a day, worrying constantly about their physical and mental health. My once strong parents seemed so frail. I became angry at Richard for dying and leaving me to have to deal with it! When I tried to hug Mum she would often push me away and say she missed hugs from Richard because she had a ‘special relationship’ with him, which devastated me. I will never be able to be both son and daughter to her and was not aware that was how she saw the family unit. Also, strains began with Emma. My friends were brilliant in the initial stages, but many have now moved on and others have forgotten. My husband had been brilliant but, as the years go by, I think he finds it hard to deal with the fact that I can still hear a song on the radio and burst into tears. Eighteen months after Richard died I was treated for clinical depression for ‘delayed bereavement reaction’ which I am still trying to manage. Richard was my only sibling, whom I adored. A normal hard working guy. There were only 10 months between us and as children we were often mistaken for twins. We always looked out for each other and had a brilliant childhood, with loads of happy memories of holidays and good times. We were incredibly close. He was tall, handsome, fit and loved having big parties. He was a wonderful, natural father. It is our job as a family to ensure that his son Jack knows that too.

© Cardiac Risk in the Young 5

Sarah’s Story by Julie Caston I was 28 when Sarah died. After a night out at a concert I was anxiously returning home the following morning to the house we had bought together four years earlier. Her boyfriend had texted me saying he had not heard from her that morning so I was relieved when I saw her keys inside. I shouted but got no response so ran up to her bedroom. At first I didn’t see her as she was half on the bed and half on the floor. I assumed she had had some kind of a seizure and I rang the ambulance. But I didn’t think she was dead. The paramedics on the phone kept asking if she was breathing and she wasn’t. By the time they arrived I had realised she might be dead but I was in a state of shock and had convinced myself they could sort it out. When the paramedic said he was sorry but there was nothing he could do it became a horrific reality. I ran downstairs and sat on the floor in the hallway. I didn’t know how to deal with this information. I realised I had to call her boyfriend back and tell him what had happened. How do you tell someone something like that? It was a brief conversation and he asked how she had died, something that had never occurred to me to ask the paramedic. She was dead. She was 34. That was all my brain needed to know. The reason seemed irrelevant. When people asked me I just thought ‘what does it matter?’ I also realised I was going to have the horrific task of telling my parents. They live about three hours drive away so, again, it was going to have to be a phone call. I was trying to think what to say. My sister’s boyfriend, and mine, arrived and offered to call my parents for me, but I felt it had to be me who made that phone call. When Dad answered I checked Mum was with him. He sounded so cheerful all I could think was ‘when I have told you this I can’t take it back’ and everything will change. I don’t think they could take it in so the first conversation was short. Later, when we spoke again, they agreed not to drive over until the following day. It was harder for them to believe than it was for me as I had seen it for myself and it was, unfortunately, very real. I switched into work mode for the funeral as there was so much to think about and organise. The tasks made the first two weeks bearable. I was worried there would be people I hadn’t told but reached a point where I couldn’t tell anyone else as each time I had to go through it again. It was gruelling work and seemed surreal but it helped that the family was together constantly and looked out for each other. Worrying about them took my mind off myself. Now I realise I hadn’t got my head around what had actually happened at all. Fortunately Mum, Dad and my sister’s boyfriend agreed on the basics so we had no problems deciding on whether to have a cremation or burial. They are really hard decisions as it’s obviously not something Sarah and I had ever spoken about. They really should make everyone decide these things at a certain age as the choices are bewildering.

6 © Cardiac Risk in the Young

The day before the funeral it dawned on me what was going to happen. I became apprehensive and felt unprepared and very ‘lost.’ Fortunately all went ‘well’ and I managed to do most of my eulogy without breaking down. There were so many people there, it showed me what I already knew – that everyone thought Sarah was as great as I did. The wake was also ‘good’ and I felt we had judged well what to do and it was not as depressing as I expected. After the funeral was the hard part, the strange feeling of ‘what happens now?’. The coroner’s report had ‘heart failure’ on Sarah’s death certificate, but there was not a lengthy inquest. The funeral home advised us to get in touch with CRY. Unfortunately the Nottingham coroner had recently changed and whereas the last one would have put us in touch sooner with CRY, I’m just glad I heard about them at all. ‘Heart failure’ is a generic term for one of many things meaning I would need to get myself checked. ‘Losing’ Sarah has had a massive life-changing impact. It’s been terribly hard to get home and not have her there, as the loss is so painfully obvious. I kept all her things in the house as if nothing had changed – when everything had changed. On the practical side I have to now pay the mortgage on my own and live on my own which is something I have never done before and is hard to get used to, especially under these circumstances. These practical problems have added more stress and anxiety which, coupled with my grief, has made it very very difficult. I have become closer to Mum and Dad and my extended family. We realise now that life is short and we should meet up more often. My boyfriend and friends have been really supportive and I can’t imagine what it would have been like to not have had their help. To me Sarah was my big sister, my housemate, my best friend and the person to whom I could tell everything and anything. She was incredibly generous and always thinking of other people instead of herself. She donated her time to looking after abandoned horses and raised money for charity by running the London Marathon. We shared similar musical tastes and spent many evenings going to gigs, staying in shoddy B&Bs and having a fantastic time! She was a talented artist and baked the best chocolate cake in the world; she seemed to be great at anything she put her hand to. I get really annoyed that she thought so little of herself when she was the best person you could know. She had so many silly and, at times, annoying quirks! But that’s what made her Sarah and it’s those things that make me laugh even when I am sad.

© Cardiac Risk in the Young 7

Nolan’s Story by Michelle Foley It was the day after my 28th birthday, 26th August 2008. Everything was going well. I loved my new job and my brother was enjoying the first day of his annual leave.   After a very busy day at work I was rushing to get home to my second job but was confused when my Aunt Margaret was there instead of Dad to collect me from the station. As soon as I walked in Dad approached me and instantly I knew something was wrong.   Only four years earlier Mum had been diagnosed with leukaemia.   When Dad said “something terrible has happened” I remember screaming for Mum. Dad explained Nolan had collapsed and “there was nothing they could do”. I fell to the floor and started hyperventilating. Someone called work, explaining I would not be in.  When I tried to call Sarah, a close friend, the words would not come out.  Dad took the phone and within minutes she was there with her husband, my other best friend Kristy and my boyfriend. They gave me great strength: I am thankful they were there that evening. Apparently Nolan was watching TV when his stepdaughter left to pop out to the shop that morning. Twenty minutes later she returned home to find him on the floor. At first she thought he was joking around but called her brother and then an ambulance when they realised it was serious. Nolan had suddenly died age 30 and there was nothing anyone could have done to bring him back. I felt empty inside. I broke down every time friends and family visited.  I wouldn’t talk about the funeral.  The first thing people said was “how are your Mum and Dad?”. Siblings hurt too. Losing Nolan was not just losing a brother but losing my best friend, my security and the person who helped me through bad times. Close family started arriving at my parents’ house the morning of the funeral which was the hardest day of my life.  I did not know what to do or how to act, and was overrun with emotions that could not be put into words. My friend Michelle said she would never forget my scream when the cars turned up to take us. Hundreds of people were in the church when we arrived. It made me feel happy inside that so many people cared about my brother, and us. There were friends we had not seen in years and teachers from our junior school. All may only have been in his life for a short time but that impact had been memorable for them.   Leading up to the funeral I put a page on Facebook to let everyone know, and to make connections with as many people as possible for him to have the best send off.  I feel I did him proud and he would feel special to have so many people there. Everyone kept telling me I would feel better after the funeral, but in some ways I felt worse.  Everyone around us was continuing with their lives, but my parents and I were struggling to know how to continue our lives without him.   8 © Cardiac Risk in the Young

We have always been a close family and the four of us never let anyone come between us.  Now there were only three so we had to be even tighter.  We did everything together and it definitely has made us stronger. I did not get involved with the Inquest. Mum and Dad must have kept it from me. They were brilliant because through all the upset of losing a son they were still making sure I was being looked after.   They could not understand how this could happen to a young, healthy and well loved man.  Even though they were blessed with lots of amazing friends and family they did not know anyone who had been through this.   A friend had heard something on the radio about CRY so Dad searched the Internet and they found the CRY bereavement days a huge comfort. On reflection there were things that had made Nolan very happy before he died. In May 2008 he got married and I was very proud to be a bridesmaid. His honeymoon was in Canada where he spent quality time with his cousins, aunts and uncles who live there.  This now means a lot to all of us and my parents and I have since visited too, hearing stories of all the fun they had during the three weeks.   Also, on the night of my birthday I had the longest phone conversation I had ever had with my brother. I will treasure that phone call for the rest of my life. Was it fate the night before we lost him?  When I returned to work I became very successful in my job and attribute the inner strength I found to my brother.   In December 2010 Mum’s leukaemia returned and, sadly, she passed away on 10th December 2011.  Part of me wonders if the leukaemia came back because of losing Nolan.  Mum lost some of her sparkle after 26th August 2008, and I like to think they are back together again. Three years on and I am still struggling to come to terms with the huge loss. I find talking about him really helps as I still want him to be a huge part of my life. There are lots of things that affect me. I find it very hard to tolerate people complaining about small things and become short tempered. I am honest with my feelings and tell people if I am having a bad day.   I worry about the future without a sibling, how to handle losses without him and am sad that when I get married, or have children, he will not be there celebrating with me. I try to remain happy and live my life as I know this is what Nolan would have wanted.  Nolan you will always be a part of me and I know you will always be guiding me.  We had a great 28 years together and I am so proud to be your sister. I know you and Mum are looking after each other. Dad and I miss you both every day. © Cardiac Risk in the Young 9

Martyn’s Story by Charlotte Henderson (Luckett) I’m not sure where to begin. I was present when my brother Martyn died in hospital on 11th July 2005. He was only 19 and it was the worst day of my life. Everything changed from that moment forward, including relationships with my family and especially my friends. I became a new person. I carry a lot of guilt. Could I have done more; did I do the right things at the time; should I have known what was going on? These questions will live with me for the rest of my life and I will never know the answers. Martyn was living with me in Swindon and the family was down in North Devon, a three hour drive away. It was awful when the nurse phoned my parents from the Swindon hospital where the ambulance crew had taken him. All I could hear was Mum crying uncontrollably in the background. I think that sound will stay with me forever. Because I had already ‘identified’ Martyn, Dad was not permitted to see him when he and my other brother, Nick, eventually arrived at the hospital. Afterwards I was unable to go back into my flat because the death was sudden and therefore it had become ‘a crime scene’ and the police had to search it. Also, the ambulance staff had not cleaned up before they took Martyn to hospital. I was very thankful to my neighbour who did this for me before I went in. Everything was surreal. The lead up to the funeral was horrible. We had to decide whether to delay it to wait for Martyn’s heart to be returned by the pathologist. We decided to go ahead and donate his heart to research which would hopefully help someone else in the future. I am not sure now how Nick and I spoke in front of the 400 people who came. I think we were on another planet and just going through the motions. I don’t think I could do it now. We hosted a massive tea party at the wake and were comforting everyone else, which people must have thought was weird. I guess you put on a show to make people feel better as they can feel awkward dealing with grief. Two weeks after Martyn died I had my first panic attack - flashbacks of the moment it happened, which was terrifying. I just had this horrible feeling that I was going to die. I thought if I fell asleep I would never wake again. Over the next few weeks I had them frequently and couldn’t sleep on my own. I lost loads of weight. Sometimes my arm went numb. Physically and mentally I was a wreck. I frequently ended up in Casualty because I thought I was dying. Reading books on anxiety and panic attacks helped greatly.

10 © Cardiac Risk in the Young

I moved back home but felt lost and disappointed with myself that I was not coping as I thought anxiety and panic attacks were for wimps! But grief has to come out somewhere and mine was certainly physical. My chest pains were down to hyperventilating which also brought on the panic attacks. Lack of sleep didn’t help, but being screened helped tremendously. Nick and I were clear (as far as the doctors could tell) but then the depression kicked in and it was about three years before I could sleep on my own in a house. I love my parents to bits and have no idea of how it feels to lose a child but sometimes I want to scream. Occasionally I think twice about calling them because I’m not having a great day and I don’t want to upset them and can’t always cope with their grief as well as mine. Or sometimes I am having a good day and I’ll call my Mum and she’s having a a bad day, so I end up having a bad day. You don’t want to upset your parents because they’re trying to cope too and trying to be strong. It’s like you are all trying to outdo each other on how strong you can be for each other whilst, inside, you are really not coping very well. It’s like grief is ‘the elephant in the room’. Christmas and birthdays are never the same. A dark cloud hangs over the build-up and the actual day. Sometimes I would just like a ‘normal’ Christmas or birthday, but then I remember why we don’t and shout at myself for being so selfish. Grief is weird. The best advice I can offer other siblings who have suffered a loss and feel like I did is to get screened, talk to your cardiologist and, if you need more answers, talk to CRY. Also, go to the CRY support days which I found invaluable. They’re emotional but talking and listening really helps. I have now taken up long distance running and have run 10 half-marathons and the London Marathon in memory of Martyn. It’s a positive way to remember. My relationship with Martyn was a typical sibling relationship. Ups and downs. Times when I wanted to strangle him because he irritated me so much. I would literally give anything if he could only be here irritating the hell out of me now. Recently we had formed a friendship rather than just having a brother/sister relationship. So, I not only lost a brother but I also lost a friend. I will never forget Martyn and I will always talk about him, especially when I have children because he was, and will always be a big part of my life. I will tell my children how Mummy and Uncle Martyn used to fight like cat and dog, but we always loved each other. I feel I am a better person now. I don’t let the small things bother me anymore and I don’t waste time with people who are not worth wasting time on. You can’t buy time and it’s such a precious thing. You do learn to cope; it takes time, but you do.

© Cardiac Risk in the Young 11

Anthony’s Story by Dawn Iverson He rang me. It was 4.30am. He often called me at all times of the night so I assumed that’s all it was. If I didn’t answer he would usually call my mobile. I picked it up expecting it to ring. It didn’t so I assumed it wasn’t important. I didn’t know that the ONLY time I didn’t call him back, he would die. He was dying and he called me. And I didn’t pick up the phone. I was 24. 10 years older than my little brother – Anthony. The big sister who took him to the park, listened to him, showed him how to build a website. He was going to live with me when he was 16. We were a pair. Wherever I went, he was always with me. If not physically, then always in my heart. The morning after the phone call, the line was engaged when I tried to call back. Mum texted me to say she also had a missed call at 4.30am and that the line was now engaged. I panicked. I called my sister, she agreed to check on Anthony then call me back. She didn’t call. I called her again and she was hysterical. I talked her through calling the ambulance and getting help. I rushed to the house, driving past a nursing home and begging a nurse for help. Once inside I ran upstairs, felt for a pulse and recoiled when I felt how cold he was. He had the phone in his hand. He looked peaceful – like he was asleep. He always slept in his clothes. He was a teenager: life was too busy to get properly ready for bed. Mum rang and the nurse I had collared from the nursing home answered. My partner told her Anthony was dead. I was in shock - consumed in my own world. I called my other brother, Phil; I sat with Anthony’s friend who had been staying; I called his friends. Then relatives. People wanted to know what had happened. And I didn’t know. He was healthy and then he was dead. And I was devastated. I watched them take him out of the door in a black body bag, on a gurney. I can’t remember anything else except waiting for Mum. I would collapse in uncontrollable sobs on his bed. I wanted to end my own life. I could not see any possibility of a life without him in it. That must have been hard for my partner to hear, but I was so consumed with grief I had blinkers on. All I wanted was Anthony, and I would do ANYTHING to have him back. Rumours spread around his school that he had been drinking or taking drugs so Mum spoke to the newspaper and the story ended up on the front page. “He went to sleep and never woke up”. Copies were put around school to try and dispel the rumours. They held an assembly for other pupils in his year and flew the school flag at half mast until after the funeral. It meant so much that he was remembered outside our family. Between Anthony’s death and his funeral, I felt very alone. People kept calling and asking questions and I felt like I was expected to deal with other people’s grief and shock. We cremated him, placing his ashes in an oak box and buried him in the village graveyard. I felt proud when the vicar read my piece out at the funeral but the family didn’t speak to 12 © Cardiac Risk in the Young

each other - separate people in their own little worlds of grief. We spent 18 months waiting for the Inquest. It angered me not knowing what he died of, whether it could be inherited, whether we all might have it. A living nightmare. Not only had my brother died, any one of us could go next. I would get palpitations, panic before going to sleep – worrying I would never wake up. I would make sure I’d heard from everyone every day and spent my life trying to make up for that last day with Anthony. My brother told me to stop being stupid. I didn’t know until I attended the CRY sibling bereavement day that this is EXACTLY how other siblings had felt too. Everyone else seemed to be getting on with their lives, and I seemed stuck in the blackest pit. My partner left me, I had no close friends and felt incredibly lonely. Mum was with her partner, my brother and sister were going out drinking together and I felt forgotten; out of sight, out of mind. I wasn’t involved in the Inquest. Nobody thought to ask the person who knew him best. Me. They asked Mum. I was with him the day he died. And nobody asked me. Because I wasn’t his mother my opinion didn’t matter. And I had no right to say anything. Everyone asked how Mum was. How Mum was coping. How awful it was to lose a child. All the cards the phone calls and visitors were for Mum. Nobody spoke to me. Anthony was everything to me, so much more than just my little brother. Everywhere I would go, I would think of him, buy him things, invite him over for pizza, a film, share new software programs with him. I lived to make sure he was happy. And then he died. I felt so incredibly lonely without him. I had lost my sibling pair. Everything changed. I postponed University, then dropped out. I became increasingly depressed, lost my friends, my self esteem and my family. I could only hold jobs briefly. But losing Anthony has meant some positive changes too. Without his death I would never have moved to the other end of the country, met my current partner, started a new career, or made new friends. Family relationships changed and I am closer to my father and sister. I don’t feel so isolated from the family. Since Anthony’s death, it seems more difficult to find friends. I’m not interested in small talk, drinking and petty arguments. Life’s too short not to be honest with people, and to waste time drinking and worrying about work. I’m not shocked by anything. Now the worst has happened, I don’t think anything else could be harder than what I’ve already been through. Anthony was everything to me. Funny, mischievous, clever and generous. My reason for getting up, my favourite person in the world, the only one who could make me really smile and the only person I would answer the phone to at 4 in the morning! He was talkative, sensitive, honest and brave enough to ask for help when he needed it. He never made me feel stupid. He was only 14 and had so much living to do. I’ll always miss him. He taught me how to listen, when to ask questions and – most importantly – when to shut up! Which I shall do now. Miss you Squirt xx © Cardiac Risk in the Young 13

Simon’s Story by Katherine McNamara On Thursday 17th July 2008 Mum and I arrived in Ireland for our ‘girly’ weekend. After a fun day out we returned to our hotel and Mum had a message to call Dad at home. Her face fell and I knew the news wasn’t good. “Simon’s dead!” she said. Simon - my little brother. Twenty-five years old, fit, healthy, sporty with a successful job, his own flat and a long term girlfriend whom he was going to marry. He was the life and soul of everything. He was on holiday with University friends in Croatia and sitting texting on the hotel bed. And that was it. His two best friends did all they could and a nurse was there within minutes, with the ambulance crew arriving soon after. But there was no hope. They said it was like switching a light bulb off. Simon had gone. From that point it is a huge blur. I felt my heart break as we waited for that plane home – a sharp, physical pain like I had never felt before, and I knew it would never mend. How could I go on when I had a life sentence to live without my gorgeous little brother? Waiting in Gatwick Arrivals for Si’s luggage, knowing he wouldn’t be coming out of the doors with his mates, was perhaps the hardest thing I have ever done. My family coped in very different ways. We had always been, and remain, an incredibly close unit, supporting each other through thick and thin, but we quickly learnt that this time we were all suffering together. Turning to each other for help wasn’t always possible. Dad and Jonny (our older brother), flung themselves into practical arrangements and admin – sorting paperwork, the funeral, charity memorial events and much more. Mum and I talked a lot as we had always done, but coped differently. I needed to believe that there was a positive reason Si had been taken from us and that he was happy and safe. Mum believed Si’s life was over. That there was nothing else. During this time, although we all supported each other and were closer than ever, we had to accept our differences. The funeral was, and still is, an unreal event. The ceremony was just for close friends and family, but at a celebration of Si’s life immediately afterwards hundreds of people turned up from all over the country. I was so proud and thankful but it was a huge shock to my system. Seeing Si’s coffin, and all his friends still alive, was like gradually sinking further into quicksand. I think it all went ‘well’ and I returned to work soon afterwards. Within three months of losing Si, Jonny and his fiancé, Becca, got married. It was a hugely positive event and kept us all going but for every minute I enjoyed, I felt an incredible sadness and aching emptiness which continues to this day. The happier the event, the harder it is to accept Si isn’t there to share it with us. When the post mortem results came back there wasn’t really any closure. I was relieved to know there was nothing more anyone could have done and if Si had been in the UK it

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was unlikely it would have made any difference. But we still didn’t understand what had caused his death - just what had not caused it. The raft of scans and tests we went through as a family was more difficult to cope with than I had expected. I wanted them to find something which would explain why Si had died, but I didn’t want anyone else in the family to have something wrong. And then when nothing was found, a thousand questions remained unanswered. To this day it is so hard to explain to people that Si’s heart just stopped beating and we don’t know why. It took six months before the blanket started to lift but I was not, and never will be, the same person. People say time heals. It doesn’t. You learn to live with the loss but the pain and the sadness is always there. I can laugh and enjoy life now but the gaping hole is left. Si is always in my thoughts. I believe you are who you are because of what you have experienced and not in spite of it. I have become calmer and do all I can to try and help others who are suffering. Things which would have worried me before don’t matter anymore. My family and I have continued to deal with our loss in various ways, but we are able to talk more together. Other people can find it hard to cope at first with how we include Si in our conversations but, to our family, Si is still a part of us and we do everything we can to keep him with us. Jonny has set up a rugby team - ‘The Pinks’ - drawn from their mutual friends. Dad put all his efforts into raising awareness of CRY through business contacts and Nottingham University which now has screenings and holds its own CRY events. Mum has close friends who have joined her in doing lots of symbolic things such as planting snowdrops in Si’s memory and lighting candles in churches around the world. I have been concentrating on raising awareness of CRY at work and across a network of contacts. I am doing the CRY Bereavement Counselling course. It takes two years to complete and feels wonderfully positive that I can do something proactive to help other siblings who are experiencing the horror of losing someone so unexpectedly. Si was born seven years after Jonny and five years after me. He was brilliant at any sport he tried (including mixed netball which he set up at Durham Uni – any excuse to mix with the girls). He was extremely intelligent, getting straight A’s at school and a top 2:1 in Economics from Durham. He could dance like you wouldn’t believe and was the life and soul of every social event - usually organised by him! He was stupidly goodlooking, incredibly caring and loveable. I long for the chats we used to have and the big rugby tackle hugs. I long to have a dance-off with him on a night out (he always won). I long for Jonny and Si to be able to finish off the squash tournament they were half way through in 2008 (Si was winning). Most of all I just long to see him again. Si did more in his 25 years than most people do in 75 years. It was as if he knew he didn’t have long. Thank you for everything you gave to us Si, and for everything you continue to give. © Cardiac Risk in the Young 15

Gareth’s Story by Sian Regan Gareth died in his sleep when he was 21 and it all seems like a horrible blur that I’ve spent most of the last five years trying to put out of my mind. I was 23 and life was just starting out in a new direction. Andy and I had just moved into a flat in Cardiff and I was due to start training in London for a new job. I remember feeling life was turning a corner for me. And it was, but not in the way I was expecting. When I got back to the flat after a night out, there was a Post-it note on the door asking me to ring home which I knew could only mean bad news, but I wasn’t prepared for Mum telling me Gareth had died and they were coming to pick me up. I went into total shock, pacing aimlessly around the flat before trying to pack. I couldn’t sleep so spent that night reading the whole of The Communist Manifesto, which is more than I’d ever managed during the whole of my Politics degree. I felt numb. I had only seen Gareth a few days before when he seemed so fit and well. His death made no sense. Two policemen had come to tell my parents that Gareth’s friends had found him dead in bed. Mum has described being told that Gareth had died as ‘every parent’s worst nightmare’ and the impact on my parents has been immeasurable. They were allowed to see Gareth in the hospital mortuary, but not to touch him whilst the police continued their investigations. The following days were very painful. It was really difficult to visit both grandmothers to tell them in person that Gareth had died. Until the post-mortem, a policeman had to stay stationed outside Gareth’s room but, when we were able to get his phone, I rang some of his university friends to tell them what had happened, and cancelled his job interviews. It made me feel useful, but was horrible as it began to sink in. I postponed the start date for my job and spent a lot of time in the nearby coffee shop just to get out of the house. I helped pick the music for the funeral with Gareth’s friends, which I found really emotional. The funeral is a blur but I was really touched by former teachers who came and that the church really was packed. Everyone spoke so movingly at the service. Afterwards I felt empty as life had to start getting back to normal - but it was a ‘new normal.’ I had my job and worked on making our flat into a home. I’ve never been as fit as I was in those few months after the funeral as I found the gym to be a good escape. We were tested which was a strange process to go through as we didn’t want to find that any of us had heart conditions, but at the same time we did want to find answers about what had happened to Gareth. I underwent a number of tests and was found to have Long QT Syndrome, although, like Gareth, I have never had any symptoms. I was prescribed beta-blockers.

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I struggled to adjust to things, and often found myself becoming argumentative. Andy had to put up with a lot at this time but his support, and that of family and friends, helped me through. The Inquest was just another dreadful day to be got through but like the funeral, it feels like a blur now. I remember funny details: the Coroner’s Court feeling like a concrete bunker; the carpet like Astroturf; the Coroner’s Officer wearing a large ‘Elvis’ belt and a cape, with his hair in a quiff. My mind latched onto these details in order to blank out the statements which had to be heard and I found those from his friends were particularly difficult to listen to. I just remember being glad when it was over, even if it didn’t really provide any answers that made sense of why Gareth was no longer with us. The loss has had such a big impact on my life. Part of me feels that I should be putting more effort into living each day as my last, now that I know just how fragile life can be. However, sometimes just getting up in the morning and facing the day has felt like an effort. This contradiction is something I’ve been coming to terms with over the last few years. One thing we have all done as a family is to try and turn our grief into something positive by supporting CRY. Shortly after losing Gareth we did the CRY Bridges Walk. It was really nice to all get together and do something. In September 2009 I got the chance to take part in the One and Other ‘Fourth Plinth’ project in Trafalgar Square and had one hour to do anything I wanted on the empty plinth. I chose to raise awareness of sudden cardiac death and CRY’s ‘test my heart’ screening campaign. The sign I held up said: ‘12 fit and healthy young people die every week of undiagnosed cardiac conditions. My 21 year old brother was one of them . . . Think about it’. It was a surreal experience being up there for all the world to see, but I hoped it would make at least some passers-by stop and think. I took the chance to propose to Andy and we were married four months later! I was keen to bring everyone together for a happier occasion but it was just so sad Gareth couldn’t be there. Training to become a Bereavement Supporter for CRY has really helped. It was good to talk things over with others who have gone through similar experiences and I really believe that talking can help deal with things. The loss has had a big impact on my relationships. It’s made me a lot more appreciative of my parents and grateful for everything they do for me. Some friends were brilliant. Others drifted away. I remember someone who I’d not seen for a while asking me, on Facebook, how I was. I told them, and never heard from them again. At 21, it still makes no sense that Gareth’s not with us any more. He was a really sweet guy with a wicked sense of humour. We had our arguments growing up, but were getting to know each other better and I’m so sad that this was cut short. I will always miss him.

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Simon’s Story by Vanessa Tardif My younger brother, Simon, died suddenly aged 35 on 23rd July 2004 of an undiagnosed heart condition. He had fainted when in his car with his eldest son and went to A&E because he felt unwell, but after having tests was sent home. Thirty minutes later he collapsed and died. That day changed all our lives. However, I need to go back one year to give the background to ‘my story’. In 2003, aged 35, I was diagnosed with Dilated Cardiomyopathy after having had dizzy spells for two years Family and friends couldn’t believe my diagnosis, which apparently carried a very real risk of sudden death. I had no symptoms, was not overweight and looked so well. I lived with my two boys and worried about something happening to me in the night, but thought it wouldn’t really happen, that sudden death thing. My parents, older brother and my children were tested but my younger brother, Simon, intended to go but did not make it.   It’s hard to find words to express how terrible the day that he died was and how that has felt since. I remember the moment when they came to tell Simon’s wife, my parents, my brother and I that they couldn’t save him. I recall saying his name over and over again. I thought that the world should stop. It seemed like it wasn’t real. It felt weird doing normal things like paying for the car park ticket to leave the hospital and driving home. How did we do normal things when the worst thing had just happened? Numbed and in shock, I think our bodies functioned on automatic. I remember waking up every morning and it suddenly hitting me. I remember driving along feeling choked and physically sick. I couldn’t stop crying for three months and felt, at times, I wanted to scream. Our family, we had always been five, would never be the same again. I hated seeing my parents’ pain. I couldn’t handle the fact that they were good people who had always been decent and hard-working and now they had to bear this. My parents remember feeling dazed and numb, thinking that it was unbelievable, that they couldn’t take it in. They felt helpless bewildered, angry and in turmoil. He looked well and had no symptoms. He didn’t seem near death. It didn’t seem possible. My older brother was in total disbelief and couldn’t register or accept it. He put his emotions aside and went into practical mode, worrying whether Simon had made provision for his family. He felt a sense of responsibility towards Simon’s family, towards my parents and towards me. He thought that it wasn’t right to think about how he felt, although it didn’t mean that he didn’t think of Simon. He sat in the garden all night trying to work things out. I was in a daze leading up to Simon’s funeral. We went to see him several times at the hospital Chapel of Rest. My sister-in-law and my parents organised the funeral arrangements with the family discussing what everyone thought. I wanted to be part of it and did a reading. My older brother helped carry the coffin and did Simon’s eulogy. One of the hardest parts of the funeral was seeing Simon’s four children. I felt so dreadful for them. The funeral made everything so final. It was, perhaps, comforting to see how loved Simon was, but we knew that anyway and didn’t need his funeral to tell us.

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I didn’t really understand what would happen at the Inquest. It seemed like a very cold, matter of fact affair, a formality. It didn’t fit with my feelings of enormous sadness and despair. Simon lived life to the full in every way. He was a marathon runner, football coach, ran his own successful business and was married with four children. No one could believe that he could die, just like that. A tissue sample was sent to Dr Mary Shepard at the CRY Pathology Centre and confirmed as ARVC and my Cardiomyopathy was reclassified. I wish I had dragged him to the hospital for screening. I asked him on several occasions and he was always too busy and, although he was always my ‘little brother,’ he was a grown man who had to make his own decisions. I firmly believe he intended to go for the tests but thought there was really nothing wrong with him and he just didn’t get there in time. It’s almost cruel that the one other person in the family who had it, didn’t make it to be screened. Even now I still think, it couldn’t, it wouldn’t happen to me or the children or anyone else in our family. But we know that it does. I would never have thought that ‘my little brother’, the youngest in our family, would be the first to die. I think of our lives as children growing up and being so close, never knowing what the future held. I am left with a feeling of trying to make the most of every day. I feel that Simon was cheated of a chance. If only he had had the opportunity of a defibrillator.* I wonder why I got a chance and he didn’t, as if his death insures my life. That makes me feel that I have to make it worthwhile. I think that it is something that you never really come to terms with - you just learn to live in a different way. I have struggled seeing my parents’ pain but feel there is nothing I can do or say to help them. Sometimes, it feels as though a bomb has gone off in the middle of our lives. Even though we all support each other as a family, it is difficult to understand each other’s grief. I had thought that my older brother and I might become closer through our loss as we shared our sibling grief. However, he didn’t seem to want to talk about it. Although it felt as though a couple of people didn’t understand my grief, or how frightening it is to live with a condition that caused my brother to die so suddenly, most of my friends were a huge support, and continue to be. It made me realise what is really important in life. I feel so lucky to have known my brother for his whole life – I knew him from the day he was born to the day he died. There was a year between us and we shared so much throughout childhood and adolescence. He was young and fit and had everything to live for. Simon liked everyone to be happy and he brought such happiness. I’ll never forget his smile. He was special in so many ways and we were all so proud of him. He inspired people, was respected by both young and old and loved by so many. I see glimpses of him in his four children. His memory lives on and he will always be a part of our lives.

*a defibrillator is implanted if a person is considered at risk. Vanessa had symptoms which alerted doctors to her condition. Simon had no symptoms until the day he died. Further information:

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Stuart’s Story by Ian Tocher I was walking my friend’s dog when I spoke to my sister, Janice, on my mobile. She told me that Stuart had ‘collapsed and is no longer with us’ suddenly dead at the age of 38. The words didn’t sink in. I returned to my friend’s house, shouted ‘my brother’s died’, and bizarrely, carried on with the dog walk. Half an hour later I came back and sat by the window where I stayed for two days, periodically ringing my parents and sister for updates on what had happened. Returning from the pub that evening - where I sat drinking, in tears, trying to obliterate the news from my brain - I was so annoyed I could no longer ring Stuart that I threw my phone so far it broke.

Two days later I drove through icy weather to Stuart’s little house in Fareham where the family was gathered. Probably the saddest moment of my life was when Mum took down the little Christmas tree he had bought 10 days earlier, around which were his presents. Stuart had collapsed whilst running for a taxi and the first police car - assuming he was drunk - told his friends to get him out of the road, and drove off. A second police car called an ambulance and started CPR, continued by the paramedics before taking him to hospital. Instead of my parents meeting Stuart in Portsmouth later that day, they had a knock on the door from two police officers to inform them that he had died.

With no explanation for his sudden death, I found the CRY website and was shocked there were so many families with similar stories. Like Stuart, these people were usually the life and soul of the party, very fit, and the last people you would expect to suddenly collapse and die. It seemed Stuart had probably died from Sudden Adult Death Syndrome (SADS). Even though we were still awaiting the pathology results we were allowed to hold the funeral. I spent most days before this sitting in my friend’s IKEA chair. Unwashed, barely eating, my friend kept me going by insisting I walked her dog twice daily. I had last spoken to my younger brother on Christmas Day 2009 to tell him she had crashed her car. Although his ambition was to become a mountain guide, Stuart was a mechanic so I always involved him in car-related incidents, whether he wanted to be or not. A month earlier I’d been out clubbing with him in Fareham. Now, a photo of his smiling face was shining out from the Order of Service. It was a dream-like experience. I persuaded myself it was all a big mistake - until the silver hearse arrived with his coffin. The service was packed and I think Stuart would’ve liked the smattering of garage works’ vans in the crematorium car park and the many funny comments written in tribute to him on Facebook, which I read out. The wake was held in his local which was filled to bursting with shocked relatives and friends. Stuart had died from a rare condition called Cardiac Sarcoidosis which is treatable and occurs most often in the lungs or lymph nodes. It is rarely fatal except when it affects the heart causing arrhythmia and sudden death. I felt nervous when I learnt that the coroner had decided to hold an Inquest to give the pathologist an opportunity to explain his diagnosis to the family. The pathologist was the only witness and explained that Stuart’s heart had become enlarged with the granulomas which were a sign of Sarcoidosis.

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The Fareham journalist who attended wanted a story about Stuart and I told him about the Snowdon Memorial Walk a few weeks previously when Janice, myself, 29 of his friends, and two dogs hiked up Snowdon for the anniversary of his 39th birthday. At the top we ate the cake, drank Guinness and scattered his ashes. Stuart used to finish work on a Friday and drive with friends to Snowdonia, pitching the tent in the dark and then head to the pub for last orders. They would climb all weekend before returning late Sunday night. It felt appropriate for Stuart to be part of Snowdonia. We always got on as brothers, but didn’t see much of each other until he moved to Fareham, a year before he died. Both newly single, the weekends spent together were memorable ones. The blistering hot summer day we visited the Submarine Museum in Gosport, and the Historic Naval Dockyard and Gunwharf Quays. Another, at the West Dean Chilli Festival near Chichester where he joked around, trying on sombreros. The last time the whole family was together was in Portsmouth for Dad’s 70th and we took the ferry back to Gosport. I can’t go back down there now without breaking down in tears. I particularly remember our last weekend in Fareham, in December 2009. We went out for a slap-up meal, on to a pub, ending up in Fareham’s ‘trendiest’ nightclub. The next morning we walked into town through thick frost and went Christmas shopping. Stuart bought that mini Christmas tree in Wilkinsons. I could never have imagined I would not see him again. After he died there was a flurry of sympathy cards, the funeral, the wake, the Snowdon Memorial Walk, the Inquest and a memorial tree, planted in Fareham in 2010. Janice ran the London Marathon, something Stuart had always wanted to do. She raised a lot of money for CRY and I, with much less exertion, went on the CRY London Bridges Walk. Alongside all these attempts to come to terms with what has happened, to remember the positive, there is for me the almost unbearable pain of his absence. Stuart was the kindest brother and friend that I could have wished for.  Always smiling, he was generous with the time he gave to others and is greatly missed by his family and many friends. His death has brought the family closer and we keep in touch more carefully with uncles, aunts and cousins too. I’m not sure how the other family members cope with their loss. Janice and my parents try to remember the funny, positive character that Stuart was. Most friends have been very supportive, not fully comprehending what it feels like to lose someone so close. This is why I found the CRY Sibling Support Day so helpful – finally meeting a group of people who really understood. But this is not a club I would want anyone to have to join. As for the wider world, a few weeks off work and then one is supposed to get on with life again. In our busy, increasingly secular, consumer-orientated lives there seems no clear way to deal with death and its aftermath. No established patterns for bereavement and grief, particularly when the person is young and death is sudden. Nothing prepared me for this. I’m still grappling with it and don’t have any easy answers for anyone else. It is going to be painful. It is a brutal fact that one day my brother was about an hour’s drive away, down the M3, ever receptive to a pint and a chat. And then, the next day, he was suddenly gone. © Cardiac Risk in the Young 21

Kevin’s Story by Michele Wilson I was 21 when my brother died. A few months before I remember telling friends how fantastic life was. We had no idea that Kevin’s life was about to end. I was in bed the morning of 20th September 2006, when Dad rang saying Kevin wasn’t well and in hospital. He told me to get ready quickly as Nan and Grandad were on their way to me in a taxi. They didn’t say a word the whole journey to the hospital. Mum was standing outside with a Priest when we arrived and cried “Michele, Kevin died”. I screamed and fell into her arms. They took me to see him and he looked so dead. Not peaceful like they appear in the movies, but his body in spasm, presumably from shocking his heart countless times in hope of revival; his mouth was open like he was gasping for air and he had a cut on his face from when he had fallen to the ground. We learnt that the cut indicated Kevin had died before he hit the floor, as he hadn’t tried to break his fall. I lay on Kevin’s chest in shock in the hospital bed whilst family and friends circled around us both, holding hands as the Priest read his ‘last rights’. Mum and Dad looked as numb as I felt. Their healthy, happy 23 year old son had died at work, mid-conversation, whilst sitting at his desk. On what planet does that make sense? How is this real? Outside afterwards I overheard the Priest telling Mum to focus on the blessing of her daughter, and thought: that’s me – I’m all they have left! In the week before the funeral the house was full of people, bringing food, flowers and cards. It was weird. I remember not feeling sad at all. The three of us read each card together every night, and it gave Mum and Dad an enormous amount of pride thinking of the amazing young man they had brought up and the outstanding job they had done as parents! We had always been as close as a family can be, and that didn’t change the day Kevin died, as I was included in every decision made about donating Kevin’s organs, the funeral details and what would be done with his ashes. Mum and Dad have never ever made me feel as though they lost more than I did – we all lost Kevin. Two days before Kevin’s funeral, his body came home – that was the day it hit me. He didn’t look like my brother – his body was swollen and grey and I could see under his eyelashes that Kevin’s beautiful blue eyes were gone. We were meant to be watching the final episode of that year’s ‘Lost’ series together the following night. We had planned a ‘Lost’ night in with pizza and goodies. How was he going to watch it without his eyes?! The three of us said goodbye to Kevin privately the morning of the funeral. I remember being really scared of how he looked. A dead body is a frightening thing, and I was 21 years old, looking at my 23 year old brother. The church was so full they couldn’t all fit inside and the adjoining parish hall had to be opened. I spoke because it was a chance to tell everyone how much Kevin meant to me, how fantastic a big brother he was, that he was my best friend. I swore I would live my life for the both of us and make him proud of me every single day. Friends who had come to support me at the funeral didn’t have a clue what to say as none of us had ever lost anyone younger than a grandparent before. I had never felt so alone. Where was my brother? Where was my best friend? I wanted to talk to Kevin – he would understand how I was feeling. I didn’t want to be at my brother’s funeral. I wanted to go back home where we could pretend this wasn’t happening. 22 © Cardiac Risk in the Young

At the Inquest we sat together and learnt my 23 year old brother had died of ‘natural causes’. Not having a reason for Kevin’s death made it hard to accept. How can someone so seemingly fit and healthy just die sitting down? This thought haunted me. I was so afraid that Mum and Dad would die without notice. What would I do? What if I died? What would happen to Mum and Dad? They wouldn’t be able to cope. What would happen to me? What if there isn’t an afterlife? I was absolutely terrified. Two and a half years after Kevin had died I became totally consumed by these fears and every single night for about seven months, lay awake petrified that if I closed my eyes I wouldn’t wake up. I felt I had no control over my life – It didn’t matter how healthy my lifestyle was, or how cautious I was when driving my car, because at any moment, without feeling the slightest bit unwell, I could just be sitting in a chair and my heart would decide to stop beating. It wasn’t irrational, because it had happened to Kevin! We are no longer a family whose bubble has been untouched: and suddenly the incredibly unlikely, is frighteningly possible. Mum and Dad dedicated their lives to making their children’s lives the best they could be. Just as they were about to see their son prosper, he died, and a part of my parents died with him. The awful sound of their crying would wake me each morning and there was nothing I could do to take their pain away. It would have been so easy for them to give up on life, but they didn’t and I am so grateful for that. I quickly learnt that the one thing that gave my parents happiness in this new version of life, was me. My happiness and plans for the future gave them hope. How can I be happy when Kevin has lost his life? He can’t go on the amazing holidays I have enjoyed and learn to ski or swim with dolphins. Kevin can’t meet the love of his life and get excited about their future together. Kevin has no future! I place an awful lot of guilt on myself for being the sibling who didn’t die! I feel an immense pressure to live my life for two people and to give my parents enough love for two children. Relationships with friends changed after Kevin died... I changed when Kevin died. My friends were a fantastic support initially, but after about two years, stopped asking me how I was feeling. Those with boyfriend problems seemed to get more sympathy than I did; but then my friends could relate to that: they knew what that type of pain felt like. I couldn’t talk about it with Mum and Dad because they got upset and I couldn’t bear seeing my parents cry anymore… Maybe my friends couldn’t bear to see me cry anymore? I’m not angry with them. I’m not sure I would have realised the intensity of bereavement before losing Kevin. Someone new in my life did understand the grief I was feeling; my now fiancé Andrew. Unfortunately he never met Kevin, but somehow, he just ‘got it’. He has never complained and is unbelievably patient and understanding... He has been there for me every step of the way, in every way possible and I wouldn’t be where I am today without him. He is my happiness and my hope for the future. I wouldn’t change my life or the 21 years I had with my big brother Kevin for 80 years with someone else’s brother. The details of our childhood together and the memories we created are so precious. I love my brother so much, and miss him more than words can express. I will continue to do as much as I can in life, because he can’t; and know one day we will meet again... but not yet, not yet. © Cardiac Risk in the Young 23

The Role of the Coroner following a Sudden Cardiac Death Any death that is sudden of unknown cause occurring in England and Wales (Scotland has a different system) will be referred to the local coroner. A coroner is a judicial officer, appointed to a specific territorial district having responsibility for investigating those deaths that are sudden of unknown cause (as well as those that are violent or unnatural or occur in prison). The investigation that he/she initiates may take a number of different forms but is likely to include discussions with and questions asked of the family, the local GP as well as those who were present when the death occurred and any doctor or nurse who may have tried to revive him/her. The investigation process will probably then include a post-mortem examination that will be made by a pathologist. He/she will seek to find a medical reason or explanation for the sudden death. This examination may entail a detailed examination of tissue taken from the body and specimens of blood and urine. The heart may also be carefully examined by a specialist to see if there is any obvious abnormality which may disrupt its proper function. This whole investigative process may take some time and the coroner will probably decide that the best way forward is for an Inquest to be conducted. This will give the necessary time and opportunity to those carrying through to complete their investigations. An Inquest need not necessarily delay any funeral arrangements. When the investigations are complete, the coroner will hold the Inquest (a public hearing) when those who can give information about the death will provide evidence. When all the evidence has been received, the Inquest will be concluded by the coroner reaching a decision as to how the death came about (i.e., the medical cause of death as well as the circumstances directly leading to it). This will all be recorded in a document ending with a conclusion or verdict. The coroner will then complete the death registration with the local registrar of deaths. The role of the coroner’s officer: The coroner is supported by investigating staff, called coroners’ officers. They are either police employees or civilian staff trained to carry through the directions of the coroner. They will generally be responsible for taking the cases forward and be the person that the family should usually contact to ask questions and discuss the progress of a particular investigation. As necessary, they will keep the coroner informed and take their direction from him/her. The verdicts and a brief explanation of when/how each might be used in regard to young sudden cardiac death: At the Inquest, the coroner will reach a verdict in accordance with the evidence before him/her. If the evidence shows that the death arose from a naturally occurring disease process (even though it may have been one that was unknown about during life) the conclusion will probably be that the person died from “Natural Causes”. If there was an unnatural element, as may be the case of (for example) a person who had a heart attack while swimming, then the verdict may be one of “Accident”; which might also be given if the person had been using or experimenting with drink or drugs. An “Open” verdict may be given when the evidence does not demonstrate how the death came about and/or the intention of the deceased person is in doubt. A verdict of “Unascertained” may be returned if the medical cause of death cannot be found following the postmortem examination. Where a narrative verdict fits in: Sometimes, the coroner may decide that, instead of the suggested “short form” verdicts (e.g. “Natural Causes”, etc) he/she will use alternative wording that, on the evidence before him/her, he believes better explains the way in which the death occurred. This is called a “Narrative Verdict.”

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If the family is unhappy with the service received from the coroner: In the first instance they should set out their concerns in writing and send it to the coroner for his/her personal attention. In the event that they are concerned with the results of a case then they may have to seek advice as to how to appeal. This may be both complicated and expensive as it may entail an application to the High Court. [See additional note below taken from the latest Coroners Charter.] The role of the Chief Coroner: In September 2012, the Chief Coroner of England and Wales took up his appointment. This is a new appointment created under the Coroners and Justice Act 2009. He has a number of responsibilities including the supervision of training for coroners and their staff, issuing guidelines and directions to provide consistent practice, giving directions in certain cases and generally providing leadership and a figurehead to the Coroners Service in England and Wales. His office is located at: Chief Coroner’s Office, Judicial Office for England and Wales, 11th Floor Thomas More Building, Royal Courts of Justice, London WC2A 2LL. Telephone 020 7947 7048. From the Coroners Charter: If you are unhappy with a coroner’s personal conduct you should complain to the Office for Judicial Complaints (OJC). Examples of possible personal misconduct are using insulting, racist or sexist language in court, failing to fulfil judicial duties or inappropriate behaviour outside the court such as a coroner using his or her judicial title for personal advantage or preferential treatment. There is no charge for complaining to the OJC and it can be done online via the OJC website: Alternatively, you can download the OJC complaints form and send it to the OJC by fax, post or email.  You can also complain by letter or email. The OJC’s contact details are: Office for Judicial Complaints, Steel House, 11 Tothill Street, 3rd Floor, 3.01-3.03, London, SW1H 9LJ. Tel: 020 3334 0145. Email: [email protected]  Fax: 020 3334 0031. Minicom VII 020 334 0146 (Helpline for the deaf and hard of hearing). If you wish to complain about the personal conduct of a deputy coroner or assistant deputy coroner you should write to the coroner whom the deputy or assistant deputy supports. If you think that the coroner’s handling of a complaint about his or her deputy or assistant deputy amounts to personal misconduct of the coroner then you can refer the matter to the OJC.  However the OJC cannot deal with the actual complaint against the deputy or assistant deputy coroner. Further information about complaints about coroners can be found on the OJC website: If you believe the service you have received falls short of the standards set out in this Charter or wish to complain about the way an investigation was handled or about the conduct of coroners’ officers, you should first write to the coroner. You should copy your letter to the local authority which funds the service. (The coroner’s office will be able to advise you of the relevant local authority, if you are unsure of this.) If dissatisfied with the council’s response the next step is to complain direct to the local authority (the Local Government Ombudsman) at, or by calling 0300 061 0614 or 0845 602 1983. Alternatively a complaint may be made in writing to: The Local Government Ombudsman, PO Box 4771, Coventry CV4 0EH. There is no charge to complain about the standard of service from a coroner’s office. Michael Burgess OBE © Cardiac Risk in the Young 25

The Role of the Expert Cardiac Pathologist Following a Young Sudden Cardiac Death Since many of the causes of sudden death lie in the heart it is essential that this is examined by a pathologist with expertise in looking at the heart and diagnosing specific heart diseases. The expert cardiac pathologist is usually approached by the referring pathologist who has done the initial autopsy with the consent of the coroner. The referring pathologist will discuss the case with the cardiac pathologist and will then decide whether to send on the whole heart or small samples for the opinion of the cardiac pathologist. The family will be informed of this. Unfortunately, throughout the United Kingdom there are very few expert cardiac pathologists. Previously, UK based pathologists had nobody to send their hearts to when there was a complex heart case since there is no national referral centre established within the NHS for such investigations. With the CRY funding donated to the Royal Brompton Hospital and Imperial College, we have established a national referral centre so pathologists can have the option of referring cases to the CRY Centre for Cardiac Pathology (CRY CCP) at no cost to the NHS. I have had 15 years experience in this field and have been recognised as an international expert on sudden cardiac death. At post mortem it is not always possible to identify what the young person has died of by looking at the heart with the naked eye. The expert caridac pathologist needs histological analysis of small pieces of heart to diagnose many heart conditions. It is always essential to take small pieces of tissues for microscopic analysis at each autopsy. In addition, electrical abnormalities which cause the heart to stop leave no mark in the heart and it is important for the pathologist to make sure the heart is absolutely normal before suggesting that the patient has died of an electrical abnormality. The process of the pathological investigation usually takes two weeks from referral. With the introduction of the CRY CCP, UK pathologists now have a specialist centre they can send hearts to without worrying about the cost, as the coroner had to fund these cases in the past. The difference the CRY CCP service has made is that we have designated administrative staff to deal with the complex bureaucracy involved in identification and the use of human material. In addition we have designated scientific staff who can quickly process the heart for microscopic analysis after we have looked at and examined it in detail. The dedicated staff mean we can issue a cause of death within two weeks of receiving the heart from the referring pathologist. In the past these reports were not available to the family for many months, or sometimes years. Knowing the exact cause of the sudden death comes as a source of comfort and closure for families and helps them to come to terms with the death. It is also essential for cardiological screening of the families if an inherited cause is found. This will guide the exact type of screening programme the family needs. Dr Mary Sheppard MBBCh FRCPath

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The CRY Centre for Cardiac Pathology funded in memory of Howard and Sebastian English

It is estimated that at least 12 young people die suddenly every week in the UK from undiagnosed cardiac conditions. However, due to a lack of awareness and funding, there can be incorrect or inconclusive recording of the cause of death, and it is believed that this figure of ‘12 a week’could in fact be just the ‘tip of the iceberg’. The CRY Centre for Cardiac Pathology (CRY CCP) is based at the world famous Royal Brompton Hospital and was jointly established with support from Imperial College London. Funded by CRY, the centre allows coroners to refer cases directly to the CRY CCP and receive a full report of the actual cause of death, usually within 2 weeks. Previously, some families had to endure a wait of anything from three to eighteen months for answers after their tragedy. CRY has awarded a grant in excess of £500,000 to one of the world’s leading cardiac pathology experts, Dr Mary Sheppard, to oversee the running of the CRY CCP. The grant from CRY comes as a result of the significant fundraising efforts of a family who lost both a father and teenage son to young sudden cardiac death. Sebastian English (aged 15 pictured right) died playing rugby 10 years after his father Howard died (aged 32 pictured left with Seb as a baby) - also playing rugby. Because the pathologist gave an incorrect cause of Howard’s death, his family were unaware he carried a genetic cardiac condition, highlighting the importance of expert cardiac pathology after a young sudden death. Howard and Sebastian both died of Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC) © Cardiac Risk in the Young 27

Michael Burgess OBE Admitted a solicitor in 1970, Michael Burgess served as HM Coroner for Surrey and has served as Coroner of The Queen’s Household since January 2002. He was Hon. Sec of the Coroners’ Society of England & Wales from 1993 to 2003, during which time he was responsible for the day-to-day running of the Society, including close liaison with various government departments. It included periodic meetings with Ministers and regular meetings of dedicated liaison committees. He is now the Society’s Legal Secretary. On behalf of all coroners, he prepared detailed submissions and gave both written and oral evidence to Committees of the House of Commons (Road Deaths, Mishaps during Health Procedures and Constitutional Affairs on Coroner Reform); and to Judicial Inquiries (1997-2003). He co-ordinated the Coroners’ Society response during the Home Office Review of Death Certification (2000) and the Home Office Fundamental Review of Coroners (2001-2003). He continues to represent the Society in a number of areas including Cardiac Deaths, Drug Deaths, Emergency Planning and Mass Fatalities. He was one of the Co-ordinators of the UK DVI Cadre of Coroners. He has regularly lectured and tutored coroners and outside bodies and interest groups on coroners’ practice and procedure. He was one of the joint authors of Halsbury’s Laws of England (Coroners Title) and is an Editor of Jervis on Coroners (12th Edition). He has written a Bench Book and Practice Notes for Coroners. He was appointed OBE (June 2009) for services to the administration of justice. Alison Cox MBE Alison Cox MBE is the Chief Executive of the charity Cardiac Risk in the Young (CRY) - the organisation she founded in 1995. In 1993 she instigated the first cardiac screening programme in the UK, working with the Lawn Tennis Association - a programme that was widened to the general public in 1997. As an experienced Counsellor she developed a national bereavement support programme for young sudden cardiac death. In 2002 she started the Surgery Supporters Network (now called myheart) for young people who have been diagnosed with a lifethreatening heart condition. She has been on the board of various government advisory committees and is a well known and passionate speaker about the impact of young sudden cardiac death. In 2007 she was awarded an MBE for services to healthcare. Dr Mary Sheppard MBBCh FRCPath Fellow of The Royal College of Pathologists, Consultant Histopathologist at the Royal Brompton Hospital and Reader in Cardiovascular Pathology at Imperial College London, Dr Sheppard is an expert cardiac pathologist and has established an international cardiac referral centre at the CRY Centre for Cardiac Pathology, Royal Brompton Hospital with funding from CRY to investigate young sudden cardiac deaths. Dr Sheppard undertakes extensive research and is widely published. Her textbook on cardiovascular pathology is now in its 2nd edition. As Reader in Cardiovascular Pathology for Imperial College London, she also lectures regularly to undergraduate and postgraduate students and is an invited speaker at both national and international meetings. Dr Sheppard is the Cardiovascular Pathology representative on the specialist advisory committee of the Royal College of Pathologists. In addition, she is a member of the editorial board and sub-editor (cardiac pathology) for the Histopathology Journal and editorial board member of Cardiovascular Pathology. Dr Sheppard is also an advisor to governmental bodies in relation to cardiovascular pathology and on the UK steering group developing a national database on sudden cardiac death. She is pathology representative in the UK Association of Inherited Cardiac Diseases. 28 © Cardiac Risk in the Young

About CRY’s Bereavement Support Programme CRY was founded in 1995 to help families affected by a young sudden cardiac death (YSCD) and young people suddenly diagnosed with a life threatening condition. Sudden death syndrome is an umbrella term used to describe the many different causes of cardiac arrest in young people (aged 35 and under). These include cardiomyopathies, coronary artery anomalies, ion channelopathies (such as long QT or Brugada syndrome), myocarditis, Marfan’s syndrome and Wollf-Parkinson-White syndrome (WPW). The exact prevalance for many of these conditions is still not known. Most are due to hereditary disorders, 80% of young sudden cardiac deaths have no prior symptoms. CRY’s Bereavement Support Programme has been developed to help people with their grief following the unaccountable sudden death from one of these conditions of an apparently fit and healthy young child, sibling, relative or friend. CRY provides emotional support through a network of volunteers who have suffered the sudden death of a child, sibling or partner in this way. These volunteers have achieved British Association of Counselling (BAC) accreditation with Skills and Theory certification, following two years training, so that they can help others come to terms with their tragedies. Hundreds of people have contacted CRY wondering if there are others who they could talk to, who have suffered similarly. No matter how much professional support is offered (either medical or therapeutic), sometimes just talking to someone ‘who has been through such an experience’ helps the most. CRY offers telephone support with our trained bereavement supporters, and also holds bereavement support events. There are two types of Bereavement Support Days; Regional Bereavement Support Days, and National Bereavement Support Days. These Bereavement Support Days are for people who would like to understand more about how to cope with the sudden loss of a young person from an undiagnosed heart condition and would like to meet others in the same position. Regional Bereavement Support Days, held in various venues around the UK, are for anyone who has lost a young person (aged 35 and under) to a sudden cardiac death, which people can attend either as a family or on their own. National Bereavement Support Days are held in central Birmingham. These are exclusive events held specifically for mums, dads, siblings and partners who have lost a young person due to a sudden cardiac death. Our largest annual event is CRY’s Heart of London Bridges Walk. The walk is for bereaved families and supporters to raise awareness and funds for CRY, whilst remembering the young people who have died from sudden death syndrome. For more information about the Bereavement Support Days, please call CRY’s Bereavement Support Programme Manager, on 01737 363222, or email [email protected]

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Bereavement Shock Coroner Pathology Funeral Inquest Love Information Isolation Sadness Desolation Numbness Yearning Grief Anger Distress Mourning Love Support Kindness Caring Help Reconstruction Life Love

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