Young Sudden Cardiac Death: A Father's Grief

Rich’s tribute to his son

Young Sudden Cardiac Death: A Father’s Grief

Editor Alison Cox MBE, CRY Founder and former Chief Executive Sub-Editors Lily Burke, CRY Bereavement Support Programme Manager Nat Jenkins, CRY Communications and Publications Manager Produced by Cardiac Risk in the Young (CRY) Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey KT22 7RD Web: www.c-r-y.org.uk Phone: 01737 363222 Email: cry@c-r-y.org.uk

With thanks for their contributions to: Michael Burgess OBE Professor Mary Sheppard MBBCh FRCPath Second edition - 2021

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.

Hugh Mulcahey – CRY Chair and (previously) bereavement supporter “I became involved with CRY because they were able to answer some of my questions. Before I trained as a bereavement supporter I did not know how best to support my family after our tragedy. I did not understand how men feel and react. I found that knowing more helped me to be stronger.

I hope this booklet, sharing what it is like to be a father whose child dies, will help other Dads.” © Cardiac Risk in the Young

Contents Foreword 2 Thoughts and Feelings - Extracts from their Stories

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Dads’ Stories 4 Matt’s Story by Tony Beadle 4 Tom’s Story by Paul Clabburn 6 Ben’s Story by Paul Daniels 8

Josh’s Story by Rich Fell

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Joe’s Story by Brad Herrington

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Laura’s Story by Tony Hillier

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Rachael’s Story by Bruce Lord

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Madeleine’s Story by Hugh Mulcahey

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Scott’s Story by Stephen Rennie

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Zoe’s Story by Peter Teale

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The Role of the Coroner Following a Young Sudden Cardiac Death

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The Role of the Expert Pathologist Following a Young Sudden Cardiac Death

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The CRY Centre for Cardiac Pathology

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About the CRY Bereavement Support Programme

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The 10 authors of these stories:

© Cardiac Risk in the Young

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Foreword These 10 stories have been written by fathers who have dug deep into their terrible ordeal to share their feelings after the sudden cardiac death of their fit and healthy young child.

It has been compiled to help other Dads feel less alone. After such a catastrophic event the expectation is often on “the head of the family” to manage those closest, whilst their own searing grief is sidelined. Endeavouring to relieve their wife and children from further suffering, they focus on trying to be useful and the practical challenges - expressing how they coped with: planning the funeral; worrying what their dead son/daughter would have wanted; trying to get it right; the finality of the burial. Meanwhile, they are dealing with the guilt of believing they failed to protect their dead child; the distressing implosion of the family dynamic; and siblings struggling to settle into a rearranged order.

An onerous sense of responsibility to withhold their feelings for the family’s sake becomes a combustible cocktail of suppressed emotion. Their anxiety that another child might be affected; the crushing fear that there was something that could have been done to prevent the tragedy; the sometimes hurtful responses of others … the harrowing experience of listening to the excruciating pain of a grieving mother, their wife, and the cruelty of watching her endure such sorrow, leaving them feeling hopeless and inadequate.

The hollow, conflicting emotions of seeing their dead child’s peers growing bigger and older; yearning for the son/daughter relationship that has been ripped from them; the harshness of trying to live life without them; the longing for hugs no longer there. The self-imposed duty of ensuring their child is never forgotten.

Mood swings; vulnerability; turmoil; disbelief; loss of control and the lurching from hope to despair. This booklet bears witness to the brutality of a grief experienced over a decade ago, through to the rawness of a Dad’s feelings after the recent death of his son. Their courage in revisiting the agonising impact of their tragedy has been inspired by their commitment to help other fathers affected.

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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 former Chief Executive 2 © Cardiac Risk in the Young

Thoughts and Feelings - Extracts from their Stories As I held my wife Lynne and told her, she screamed so loud I am told our neighbour opposite heard it. She was hysterical, holding on to me, sobbing uncontrollably. 40 minutes later my daughter Joanne arrived and I had to do it all again. Joanne just kept crying NO, NO, NO. All three of us just held each other and sobbed.

Life carries on with a Tom shaped hole in its fabric. Sometimes it rips further, sometimes it’s less frayed, but it’s always there. It’s there in a way I accept yet occasionally resent.

Sometimes it makes me smile but more often it makes me sad, a sense of longing for what might have been. Typically I’ll feel upset if I think about Tom and guilty if I wish the thought had never occurred to me. On top of this is the over-arching sense of guilt that I didn’t protect him. I failed my son.

I am so grateful for the time that we had to say goodbye. Ben died for the second time but this time in my arms. I watched his breathing slow and stop and his colour drain as he let go. Devastated. Nothing can prepare you to lose a child. There is no training for such an event. I couldn’t walk, breath, talk. All I could do was cry.

I felt I had waited so long to lay him to rest, that after the funeral there was a strange sense of relief. I could finally go and visit him whenever I wanted. I could say goodbye to him on my own, talk to him about football and work. The thought of having to get used to living life without him is unbearable.

Joe was taken to Addenbrookes by air ambulance. A strong young man who looked asleep. I wanted to wake and cuddle my boy. I felt how soft his skin was, how peaceful he looked, how long his fingers were. He was gone, my boy, my son, my friend was gone.

I was a mess trying to keep it together for the family.

I likened our experience to an endurance of the harshest kind. This has subsided over time but there is an emotional load that I have had to learn to carry. Ten years later, life goes on but is different because Laura is not in it any more.

Since her death I have learned that men and women grieve differently which can put pressure on relationships and lead to misunderstandings. It might seem like I am fine but of course inside I am not. I want to shout at times “who elected me as the strong one?” and “I have lost my daughter too!” …we went to see Madeleine. Her usually beautiful red curls looked bedraggled. She had a frown frozen on her forehead and a breathing tube in her mouth. We said our prayers and went home alone in silence. I knew I had to look after (my wife) Jane now and to start telling people the news.

Most men are not good with feelings and nothing is more sensitive than this situation.

There is a raw nerve around every corner. It is so easy to say and do the wrong thing.

And this is one of the strangest conundrums - that nothing seems important any more, yet everything matters.

When Zoe was pulled out of the hearse and her friends carried her in... my emotions hit me like a lead weight. I finally cried and didn’t want to hide my tears from anyone. I felt I had been so strong for my family, but this was my time and place to let it all out.

All stories have been approved for publication by family members mentioned. © Cardiac Risk in the Young 3

Matt’s Story by Tony Beadle I am 63 and semi-retired. On Tuesday 11th September 2012 at 11am, I looked out of the window to see a young policewoman walking down our drive. I opened the front door as she rang the bell and she asked if Matthew Beadle lived here. I said yes, but he was in America, and “I’m his Dad.” I invited her in and asked what had he broken and did I have to go and collect him from the airport? When she asked me to sit down I knew it was a lot worse than a broken leg. As she told me he had suddenly and unexpectedly died, I felt like I’d been hit by an express train. She said Matt had been surfing with his friends and they had returned to their motel and he had gone to his room. 15 minutes later a friend found him dead. I told her it could not possibly be Matt as he was a 32 year old super fit professional dancer who didn’t smoke or drink heavily and worked out daily. So they must have got it wrong.

The young police officer phoned the British Embassy to question the information she had and they confirmed that it was our son who had died. I burst into tears. It felt like someone had ripped my heart out. Then she contacted my wife Lynne and daughter Joanne who were both at work and asked them to come home.

Whilst waiting I thought how we had brought him into this world, looked after him as a baby, a teenager and watched him grow into a good, kind young man. Then just when I thought we’ve made it, and all is going to be OK, this came along and ripped our world apart. Why him? Why not some evil murdering scum who does not deserve to live?

Lynne arrived first and the policewoman brought her in. As I held her and told her, she screamed so loud I am told our neighbour opposite heard it. She was hysterical, holding on to me, sobbing uncontrollably. 40 minutes later Joanne arrived and I had to do it all again. Joanne just kept crying NO, NO, NO. All three of us just held each other and sobbed. Everything became a blur. Where do you start? Our lovely son dead on the west coast of America. Joanne’s fiancé arrived. We all sat totally stunned for some time.

Then it started. We needed to do things. Matt’s girlfriend Jess, also a professional dancer, was working on a cruise ship. They had been together 4 years and Matt had told me after his trip he was going to propose. I arranged that the captain of Jess’ ship would be with her when I broke the terrible news, one of the hardest things I’d ever had to do.

Meantime we had to knuckle down and get our boy home. I was numb, angry, hurt, frustrated and exhausted because on top of spending every evening on the phone to America we were spending all day dealing with his personal and financial stuff as well as contacting people, finding an undertaker (not as easy as it sounds) whilst trying to understand it all. Why? How? What for? Why him? Why us?

I cannot tell of all the crazy things that the Orange County Coroner’s / Sheriff’s Office and its staff put us through, which still makes me so very angry, delaying our son’s return and making it so hard to grieve his death. Finally the insurance company agreed to take care of arrangements and bring him home. I just cried with relief.

Because the first autopsy was inconclusive the English Coroner needed a second. Matt was eventually released to the funeral director so we could arrange his funeral. More importantly we finally got to see our boy, to prove to ourselves that this was really him.

4 © Cardiac Risk in the Young

Lynne, Jo, Jess and me, went in holding on to each other for moral support. It was now nearly 3 weeks since he died and we were scared how he would look, but he looked so peaceful as if he was asleep.

His funeral at the Parish Church was a month after losing him. We set up a web cam at the back so everyone who could not make the service could pay their respects.

There was so much love in the church that day the Funeral Director said he had never witnessed anything so moving in 30 years. Matt left church to “The Show Must Go On” with the congregation applauding his final exit. He would have loved it and I hope and pray he was watching from above.

The church was opposite the Studio where he first started dancing. His mentors Lauren and Conan Rice organised the reception there and for his dance, musical theatre, and musician friends to form a choir and do solo songs from some of the shows he had appeared in. Lauren gave an eulogy calling him our “Borrowed Angel”. I was so proud of them all, but none more so than our daughter Joanne who managed to stand in front of 500 plus people to give a reading of Matt’s life mantras.

Our next hurdle was the inquest which we did not attend. The coroner’s concern is whether death is “natural”, not how or why. We had no closure as death was still “inconclusive”.

Then a light entered our lives and we found CRY, who did their own tests.

Somehow Christmas came and went and in February we were screened at CRY’s unit in St. George’s Hospital to see if his condition was inherited from us; and more importantly whether Joanne had the same complaint. We learnt Matt’s heart was not enlarged, and that maybe it was an electrical problem. At long last we may have some kind of closure.

His West End friends’ concert for CRY at St. Paul’s Church (the actors’ church) Covent Garden was a sell-out and we will continue to support CRY’s very important screening programme to get as many young, fit people as possible tested, so their parents do not have to go through the hell we, and so many others, have had to endure.

Lynne, Jo and I knew Matt was the greatest son and brother in the world but did not know that thousands of other people thought the same until someone told us about all the entries on Facebook and the cards started dropping through the letterbox. Family, friends, neighbours and work colleagues rallied around, supporting in so many ways.

A kind word, phone call, text, e-mail, visit, cooked meal, bunch of flowers, hug or just leaving us alone.

The impact of our son’s sudden passing has been devastating for us, his aunts, uncles, cousins and of course Jess and her family. It is only four months and things are still very raw and painful. Lynne puts on a brave face, hiding how she is hurting inside. Matt was her baby. I feel empty inside but she was his mum; I cannot begin to imagine how she feels. Like having a limb torn off? I vent my feelings onto Lynne; but how does a mother cope with hers? Parents never expect to bury their children and the shock, in our case, has brought the family even closer together.

We will never forget our Borrowed Angel, the big smile, his sense of humour, positive attitude and those huge Matt hugs he always gave us every time we met. His life may have been short but by heck did he pack a hell of a lot into it and touched the hearts of so many people. It made us so proud of him.

So until we meet again Son, all my love Dad. XXXX. © Cardiac Risk in the Young 5

Tom’s Story by Paul Clabburn Tom died in his sleep on Friday, October 5, 2007. He was 14.

Unusually, he had felt unwell and been diagnosed with a virus the day before. I checked on him in the morning, glad he’d been catching up on his rest. I knew straight away that we’d lost him but I tried to save him. When a paramedic arrived, he took one look and said “Oh Christ”.

I remember feeling detached. I remember the unearthly cries of my wife, Claire, and trying to think, to organise. I rang Claire’s mum and dad. I remember the tone of my mother-in-law’s voice as she tried to take it in. I remember thinking even then I was glad my own mum and dad had died and I didn’t have to tell them.

At some point during this period we had a house full of ambulance staff and police.

The senior ambulance officer was keen to tell me the response time and how many ambulances had been dispatched. I wasn’t keen to listen. A police doctor told me that he thought Tom had probably died from appendicitis. Something the GP should have spotted had killed my son.

Tom’s sister, Ellen, a year younger than him, had already gone to school. The police drove me to her. She’d been taken out of class. She knew. I knew she knew. You weren’t taken out of class without it being bad news. I can’t remember what I said to her but I can remember her face. I wish I couldn’t.

Back home, the family had gathered. Those of us who wanted to say goodbye to Tom did so. I’m glad I spent time with him.

I can’t remember much of the rest of the day, only the evening. For some reason, we decided to go to the pub and raise a glass to Tom. All our friends gathered. I’ve still no idea how it came about but in hindsight I’m glad we did it. There was a large turn-out.

People were primed to do what they could.

I spent a weekend wondering how Tom had died from appendicitis. The coroner’s service, who were excellent, said they’d call Monday and did so. If I had to have such a conversation, then this coroner got it right. I can’t even remember his name but I can remember what he told me and how he sounded. He was very gentle. Tom had died from an extremely rare heart condition. Nobody could have predicted it. Nothing could have been done. He advised that our family should be checked.

I was stunned yet oddly elated. It hadn’t been anything we could have prevented, nothing straightforward. I wish I could recapture that feeling. Now I realise there was a possibility, the slimmest chance, that Tom might have survived if diagnosed correctly or screened.

The funeral was organised for the following week. It felt unreal. The service was in the church where both Tom and Ellen had been christened and gone to Sunday school. At least there was a link. We all spoke. I remember the courage of Claire and Ellen, tearful one minute, speaking the next. The church was overflowing. It was a celebration of a life. It brought no relief.

After that the cards kept coming and people kept helping. Then the cards came to an end and over time, a long, long period of time, there were fewer expressions of 6 © Cardiac Risk in the Young

sympathy. Only to be expected, of course, but not what I wanted or needed.

I always recall the thoughts of a woman whose brother had died suddenly. She wrote that for the first year she cried every day, the next every week, the next every month and now not as often; but, when she did, it was every bit as hard as that very first day.

That’s me too.

Much of my life hasn’t changed. I feel I still think the same things and make the same choices. I still get irritated by the small things in life and angered by what I consider the bigger injustices. To the latter, I’ve added the all-too-often preventable loss of 12 young people a week.

I didn’t consciously re-evaluate my life or my outlook. Life carries on with a Tom shaped hole in its fabric. Sometimes it rips further, sometimes it’s less frayed, but it’s always there. It’s there in a way I accept yet occasionally resent. Sometimes it makes me smile but more often it makes me sad, a sense of longing for what might have been.

Typically I’ll feel upset if I think about Tom, and guilty if I wish the thought had never occurred to me. On top of this is the over-arching sense of guilt that I didn’t protect him.

I failed my son. I’m told it’s not rational to believe that but it’s how it is.

That Claire and Ellen inspire me to put one foot in front of the other is also how it is. Claire and I are still fighting, still laughing, still struggling to live with what has happened. As ever we have different views on Tom, different ways of dealing with loss.

But we endure.

Ellen, meanwhile, is both my greatest hope and my greatest fear. Hope because I now see a young woman who appears, despite everything, to be a rounded human being.

Sure, she’s spent her teenage years discovering booze, fags and goodness knows what else, but she seems to have done this in a way all teenagers do. Fear because who knows what goes on in somebody’s head, especially that of your own teenage daughter? It’s not the easiest or most communicative of ages. Do I just see what I long to see? However we think we dealt with Tom’s death as parents, Ellen will have a different perspective. I simply hope for the best.

Our wider family and closest friends have stuck by us with love and grim determination.

It’s not easy. With family, some cope by talking about Tom, some not. Whatever the attitude and whether born of age or character, it can lead to tension. There’s no obvious compromise and therefore, on this subject, we rub along.

With friends, I see Tom’s peers are now young men who look completely different from the boys he knew. Children who were younger than Tom are now older than he’ll ever be. I don’t like that. If Tom died when an imaginary clock struck midnight, it’s still only a couple of minutes past to me. For our friends, of course, it’s five years on. That can’t be helped. That’s reality.

It’s reality too that Tom was a happy, loving, live-for-the-day boy.

I’m glad he was as special as only a “normal” person can be.

I’ve also realised as I write this, that it’s not quite true only Claire and Ellen keep me putting one foot in front of the other.

Tom does too. © Cardiac Risk in the Young 7

Ben’s Story by Paul Daniels It was a happy day. Bright and sunny. Ben was in a bouncy mood and gave us all a big hug before he left for football training. At 49 years I had a loving family, a new business start-up, two wonderful, bright, funny kids and a loving wife.

I had it all.

The phone call. Oh my god the phone call.

My wife Helena took it in Waitrose. It was Ben’s football coach asking us to come immediately to the training ground. Helena phoned me saying an ambulance had been called for Ben. I raced there, fearing a broken leg. A devastating scene awaited us. Two ambulances, two paramedics fighting to keep Ben alive, four police. His team mates in complete shock.

Ben had collapsed whilst warming up. His football coach, who Ben doted on, had immediately given CPR and his team mates had flagged down a passing paramedic.

Other paramedics and ambulance crew were there in 5 minutes. A mad dash across Bromley followed with the police clearing the way to the hospital. I had no idea what was going on, what had happened, or why.

50 minutes later a consultant emerged to say that Ben’s heart had been restarted but that it had taken too long and they needed to transfer him to St. Thomas ITU. I broke down.

My beautiful son. I was losing him, and I was helpless.

Another mad police-led dash and we arrived at the relative calm of the Evelina Ward, St. Thomas Hospital. Ben hung on for 3 days aided by a ventilator. We realised we would not have the Ben we knew back, but clung on to our prayers for a miracle. The nurses and consultants gave us belief and hope through their kindness and care for Ben, but an MRI scan forecast that brain death was inevitable. We had to let him go and the family were summoned to say goodbye.

Ben died for the second time but this time in my arms. I watched, devastated, as his breathing slowed and stopped, and his colour drained as he let go. Nothing can prepare you for losing a child. There is no training for such an event. I couldn’t walk, breath, talk.

All I could do was cry. But I was so grateful we were able to say goodbye to him. The nurse helped us to take Ben’s hand and footprints. I talked to him. Still do.

Ben was 15. A gorgeous fair haired, blue-eyed boy who was bright, cautious, sporty. His transition to school was difficult and he was diagnosed with ADHD, as well as being found to be on the autistic spectrum. Despite behavioural problems in his early years he never lost his love of going to school and we actively encouraged him to find himself through things he was good at. In sport he learnt to lose gracefully and win magnanimously. He was good; cricket was his first love, but also tennis, and football. Above all he relished team sports with team mates that judged him by his commitment and sportsmanship; although he had his mad moments and on a number of occasions I had to calm him down as he stropped off the pitch at some perceived slight! His personality and confidence grew as team mates and school friends recognised him as a first class sportsman.

I loved Ben no less than I love my wife or my daughter Frances. We formed a partnership that got him through integrating at school, steered him though conflicting emotions, helped him understand how to create and maintain friendships, and enabled him to lead by example 8 © Cardiac Risk in the Young

in helping others through volunteering. Our experiences together were formative for us both, whether it was going to music festivals, travelling to watch Aldershot or Chelsea play or attending cricket matches galore - including in Australia for the 2010 Ashes series, when a treasured photo of Sir Ian Botham and Ben was taken without any knowledge that Sir Ian was a Patron and President of CRY. 2 months later Ben was dead.

Friends, including other Dads, knew what to do and say and kept everyone in our wide circle of friends informed as we approached the funeral. Their practical and emotional support was unbounded.

The funeral became a project to remember Ben and send him on his way, not just for us but all his friends. Being a Project Manager I did what I was good at, organising! There were many crises in the 3 weeks leading up to it and I felt like I was looking after everyone but myself. Trying to hold it together, but not doing it very well. My family surrounded us with their love and many tears were shed.

The funeral itself was a blur. At his committal, a family friend whom Ben had played cricket with took the service and described our grief as a tsunami. No one saw it coming, it seemed impossible to overcome, and never ending. Later that day all his friends, school mates, team mates, anyone who knew him, gathered for his memorial service. It was fun, sad, poignant and a relief.

Ben not being here has become, for me, an intimate loneliness. His photo on the mantlepiece looks down on me. I think of him everyday. But he’s not here.

How have I coped? Excellent counselling; throwing myself into work; involvement in junior cricket; creating a young leaders programme in South East London; setting up Ben’s Memorial Fund to raise money and awareness for CRY; and screening. It all fills the gap but not the most important one. There is nothing I can do to bring him back. I miss watching him play his sport, the banter, playing cricket together, seeing him grow up. I miss being a dad to a son.

Time is healing. The first year inwardly I was a mess, albeit outwardly I tried to appear in control - but wasn’t. Despite the love of my family and my friends I felt utterly alone.

My relationship with my son was unsaid and brilliant for us both. But a new intimacy now started kicking in - one of loneliness, of things never to be done, experiences incomplete.

A surprise 50th birthday party organised by my wonderful wife with many, many friends reminded me that I was in fact not alone. That is a treasured moment in my life and my relationship with Ben. It also reminded me how much I love Helena for her own steadfast struggle through what happened to us.

We talk of Ben almost every day, laugh about the funny moments, reflect on his thoughts and views, wrestle with the difficult memories.

But another person has been an inspiration for me too - my daughter Frances. She was 12 when Ben died and has never let Ben’s death deter her from carrying on and achieving her potential whilst remembering him in her own quiet way. Frances has held Helena and I together through her unqualified love and enthusiasm for life. We owe her so much and, like Ben, her love for Helena and myself is unconditional.

And that is how my love for Ben remains and will always be.

Unsaid. Unconditional. © Cardiac Risk in the Young 9

Josh’s Story by Rich Fell I was 39 years old when I lost my son Josh. He was late so we went looking for him at his friend’s house and learnt he was in an ambulance on the school field. I ran and got into the front because they wouldn’t let me into the back. The paramedic told me that it wasn’t good.

I didn’t know that he had died.

My wife Donna followed in her car as we drove the twenty miles to hospital with sirens screaming and blue lights flashing. It seemed to take forever. Josh was brought out and his arm flopped down by his side. The whole time they were trying to resuscitate him I held his hand, talking to him, telling him his mum was on her way, and about being here for the start of the football season. But eventually they said “there is no more we can do”.

I had to find Donna to tell her the unbelievable news and met her coming down the corridor. I shook my head and she dropped to the floor screaming, “NO, NO”. Donna’s heart broke that night she lost her son and the pain she felt was unimaginable. That night part of me died too, alongside Josh. We rang our parents. It hit them hard too. They expected to die before their grandchild.

We left the hospital with just a carrier bag of his clothes and at home went straight to his room. Donna threw the bag onto the stairs saying “that’s all we have left of our son”! It was about 5am when we started walking around our town, no-one around, just us. Josh’s sister Jasmine was at home with her Grandma. Unaware. We told her in the morning that Josh had died. She cried for ages. She had walked the dogs with him the night before and now he was gone. How on earth does a nine year old understand that! She is lost without the big brother who looked out for her. We spent the next few weeks numb from the loss of our loving son.

The lead up to the funeral was awful. We cried together as we planned it. We wanted Josh’s History teacher, the Rev. Steven Knapton, to do the service. I didn’t want anything too religious. A celebration of Josh’s life as he would’ve liked it - not that you get to discuss your child’s funeral with them. We buried him on our 16th wedding anniversary.

When the funeral car brought him to our house, the Hull City flag draped over his coffin, the football shirt and football flowers, it made me realise that he was never coming back and I broke down.

His friends had tied Hull City balloons to lamp posts and kids were lining the school drive on the way to the church. I couldn’t believe the amount of people waiting there that day for Josh. Hull City had donated 80 shirts for family and friends to wear at the funeral, a sea of black and amber. The church path was lined with family and friends and there weren’t enough seats so people were standing and waiting outside and family had to squeeze in where they could. Even two representatives from Hull City Football Club were there. Josh was a massive Hull City fan. We chose the music that was played at every home game for his last journey.

The service was emotional as his friends stood up one by one to read out their memories.

One of them couldn’t manage it so I stood with him while he spoke. I was too upset to speak but was right next to the coffin while Donna read a poem. His friends joined us at the cemetery as they needed to say goodbye as much as we did and placed sweets, chewing gum, cans of pop, and letters in with him which I found heart breaking but 10 © Cardiac Risk in the Young

comforting to know he was so well liked and loved. The hardest moment was seeing Josh lowered into the ground. How could I be burying my son at such a young age? Afterwards we gathered at a club near his school where more friends joined us. He was a good role model to his mates and looked after the younger kids. We laughed and cried together hearing all the stories about Josh from his friends.

I felt I had waited so long to lay him to rest, that after the funeral there was a strange sense of relief. I could finally go and visit him whenever I wanted. I could say goodbye to him on my own, talk to him about football and work. The thought of having to get used to living life without him is unbearable - not being here with us, seeing him, hearing his voice or him in his room, tidying up after him. The house is no longer a home without him in it and the big empty gap in my life will never be filled.

As Josh’s post mortem was “inconclusive” his heart was sent to Dr Mary Sheppard at the CRY Centre for Cardiac Pathology. The cause of death was SADS so there was no Inquest, but it left us with many unanswered questions.

I feel lost without him and weekends are spent in the cemetery. Nothing is the same anymore. Hospital flashbacks haunt me. I watch his football team with Jasmine and Donna. It helps me remember my caring, thoughtful son. People say time heals but it doesn’t. You learn to live with the loss but the pain and sadness are there for eternity!

Due to years of operations for Crohns disease, Josh saw much suffering for someone so young. I will never forget him kissing me on my cheek and telling me he loved me after my surgery in 2010. That memory will stay forever, along with his text messages.

I have been lucky with my relationship with my wife. For Donna and I our loss has made us even stronger. We grieve together ensuring we don’t push each other away. We are learning to live with our loss as a couple, there for Jasmine and each other, and concentrate on fundraising for CRY to provide screening for others so they don’t have to go through what we are.

Although always a close family, we are now more aware of how important family is. We talk more now and it has brought me and my twin brother closer. We are all dealing with missing Josh in different ways but he will always be part of us and I make a point of toasting him at family occasions so he never gets forgotten. Since Josh died, most of the family have helped us with our continuous fundraising efforts for CRY, in his memory.

Losing Josh has affected so many, even people that didn’t know him. In fact our whole town! I have good friends but have made many new ones since losing Josh.

My workmates have kept me going too. Some like to talk about Josh, but others really struggle. I prefer talking about him as I like to know he will always be remembered and it’s like he is still here.

Josh was 15, a typical teenage lad. He loved life, football, friends, family, music, playing on his PS3 and jokes on me. Always smiling, happy, mischievous with everything to live for.

I long for the bear hugs you used to give me Josh and chats about football.

Thank you for the 15 years you gave me.

You were the best son a Dad could ever wish for. © Cardiac Risk in the Young 11

Joe’s Story by Brad Herrington On 7th April 1997 Joseph, my first son, was born. My pride and joy.

A boy with a constant smile, great sense of humour and a caring soul. We were mates and he trusted me with his growing pains, trouble at school and his growing interest in girls. He could swim like a fish, and played in the County Under-14 A Rugby team.

Good Friday, 22nd April 2011, was a glorious sunny day and the boys asked to go and play football. I said “See ya” without even looking up .......... that was the last time we spoke. I’ll never ever forgive myself for that. Why didn’t I hug him? Why didn’t we have something else planned? Why did I let him go?

His younger brother, Jake, rang saying Joe couldn’t breathe. I raced to the ground, the gates were locked and a paramedic was climbing the fence. I rang my wife, Daniela, and his two older sisters, Georgina and Rebecca. Joe was taken to Addenbrookes by air ambulance. A strong young man who looked asleep.

I wanted to wake and cuddle my boy. I felt how soft his skin was, how peaceful he looked, how long his fingers were........ He was gone, my boy, my son, my friend was gone.

Leaving Joe at the hospital began my catalogue of the hardest things I’ve done in my life.

I was a mess, struggling to keep it together for the family.

Jake just wanted to watch TV to take his mind off it. He was only 10 and had been with Joe. He sat there. Numb. My wife and I kept shaking our heads in disbelief. I tripped over Joe’s slippers. My wife slept with his scarf and still does. I started phoning. My mum jumped on a plane from Colorado. The phone calls at first were to let people know and then a chance for me to do something, talk to someone.

People were saying the kindest things about Joe. As the days passed we were amazed at the cards, visits and calls we got. His friends set up a Facebook page and it was incredible how many wrote something and how many messages I received. The coroner said it was SADS. It didn’t help. Nothing would.

Then came the decision you think you’ll never have to make, where do I bury my son...?

I thought of the village church where we got married. In the churchyard, the tall yew trees were swaying in the breeze, the sun shined through the leaves, and it was quiet. My wife said, “This is it”. The funeral director arranged everything. We decided Joe should wear his new birthday Vans trainers, skinny jeans, his favourite Superdry t-shirt and camo hoodie.

At the funeral parlour I kissed his cold forehead. He looked like he was going to town on a Saturday afternoon. Jake didn’t come and see his big brother lying there. He bought a new rugby ball for Joe to take with him; his mum put his birthday Superdry jacket in; and I, photos of his favourite carp captures and rugby boots, telling him “You’ll be needing these boy”.

By this time the tears came freely, every hour of every day. I didn’t sleep, didn’t eat.

Didn’t want to. My daughters were brilliant and looked after Mum and Dad. They were struggling too, but didn’t let us see. We all kept a watchful eye on Jake.

At Joe’s school there was a book of condolence, flags at half mast. The Headmaster said 12 © Cardiac Risk in the Young

they would get a coach if needed for students to attend the funeral. They did. Cambridge Rugby Club held a minute’s silence for Joe at their Rugby Festival, with every team on the pitch and the first XV wearing black armbands. His team mates presented us with a signed shirt, as did the Toulon team he had recently played against. Rugby coaches were crying.

May 11th was Joe’s funeral, delayed because of Easter and the royal wedding. Daniela wanted to wear something reminding her of Joe and chose a smiley face pin badge. I wanted one too, and for the whole family, then everybody, so bought 750. The coffin bearers and even the vicar wore one. Joe’s smile was there for all to see. As we walked under the Lych gate at the church Joe’s team mates made a guard of honour. The church was full, and we had to put speakers for the 250 outside.

During the service I learnt that this boy, who had just turned 14, had made an impression on so many. His rugby coach spoke about him as a true team player and of how Joe respected and enjoyed his family. He ended the eulogy by asking that, in the true tradition of a rugby match after a battle to clap the other team, to be upstanding and clap Joe… It made me proud that Joe had been thought of in this way, but hurt even more. We gathered after at a local hotel, meeting and greeting - but when we got home reality kicked in.

Jake struggled. His brother, roommate, sparring partner, playmate, best friend and the one he looked up to most wasn’t there. His Mum and Dad were not the same. He exploded in angry rage, slamming doors, throwing things, smashing his toys. It was like a red mist came over him. Inconsolable.

I couldn’t handle it, trying to calm him and when that didn’t work I went outside and cried my heart out. Why did this happen? What if I died too, would I be with Joe? Would Joe be acting like this if Jake had been the one who died? My head was spinning. The doctors sent me to a therapist, who sat there nodding her head asking me about my anger over the death of my son. What anger? I didn’t have anyone to be angry against.

Anniversaries started to come. On Father’s Day I had to stay strong for the family but deep down I just wanted to clear off and get drunk. Next, my birthday, then Rebecca’s, Jake’s and Georgina’s all within 6 weeks.

Then Christmas. On December 1st it really hit home and Christmas Eve I was a complete mess. I tried to be upbeat for Jake - it was still his Christmas - but he knew, we all knew. It was not going to be nice. I found a photo of Joe and Jake when they were smaller, Jake with the plate of carrots and cookies, and Joe with a glass of milk. That image will stay with me for every Christmas to come.

His Mum’s birthday, his birthday and then the 1st year anniversary soon came. Each day comes and we just have to get on with it and each is a reminder that he’s not here. Someone said “It gets better with time.” It doesn’t. You learn to hide it, control it, deal with it. We have found our true friends; those that never were; and made new friends with people that knew Joe. His friends sometimes visit, they say ‘hello’ in the street. They know the pain we are going through. They miss him as well.

His photos are everywhere.

I miss him every minute of every day and always will. © Cardiac Risk in the Young 13

Laura’s Story by Tony Hillier I am glad we took so many photographs of Laura, for the numerous memories and reminders they bring back of her personality. Fearless Laura, aged seven, standing with me viewing our house building work from the top scaffold; Laura with her loving pet rabbit, who allowed her to pick him up at any time, but growled menacingly at me; with best friend Hattie, age ten, on some school visit, with a large python draped around their necks.

The one of her helping her brother Matthew, four years her junior, with his tie on his first day at secondary school, but telling him on no account must he sit near her on the bus; Laura who learned at playschool to use scissors, experimenting on her hair the day before the harvest festival.

She was witty and funny, with her own words too; “doody” for things that pleased her; “he-she” for the bearded man in a dress who visited her counter at her Saturday job.

Laura, on stage holding a heavy turnip, which eventually fell with a thump, proceeding to roll down the front steps into the audience: she, motionless and expressionless, whilst they fell about laughing. Laura enjoyed acting and dressing up, and her imagination was legendary with family and friends.

She had many different types of close friendships, from primary and secondary school, her Saturday morning job, drama groups, and her younger cousin Martina. She loved talking, as numerous school reports testified. Her fiery temper was mostly confined to home with thankfully short outbursts, although there were enough cracks in various doorframes to remind us, along with the two crystal wine glasses she slammed onto the kitchen table causing the stems to break off.

Driving lessons were usually uneventful, except during her three test failures - usually the responsibility of stupid pedestrians, cyclists, or mothers with pushchairs on Zebra crossings - until she succeeded the fourth time. So, armed with her much-loved little blue Fiesta, her own small house near to the University College in Northampton where she was enrolled on the Early Childhood Studies degree course, and additional new college friends, she was emerging into adulthood and starting to bloom as a person. Her relationship with her boyfriend, Chris, also became more serious.

And then out of a clear blue summer sky…..

The time, day and date when Laura died, are indelibly burnt on to my memory: Friday 20th June 2003. Age 21. Working at my surgery, during her university summer break. The call to come quickly because Laura had collapsed was at 10.15am. I rushed upstairs, thinking she might have fainted. One look told me that she had suffered a cardiac arrest.

It is a surreal experience resuscitating your daughter. I moved from disbelief and panic to cool professional and back again. I withdrew once the paramedics arrived, following them to A&E where she was pronounced dead at 12.15pm. As I stood next to her I had a compelling need to cut off several pieces of her hair to keep forever. I still carry some.

My wife Joan and son Matthew, then 17, returned home where a GP colleague waited to drive them to the hospital. Waiting for them, knowing Laura had died, was extremely stressful. I had been part of the effort to try and save her, with some time to prepare myself; but for them it would be an instant shock. Matthew had never seen a dead person before, but did not hesitate going to see Laura. Later, I had to formally state words of identification to the police officer, of the now deceased Laura Hillier: final and emotional.

14 © Cardiac Risk in the Young

In the hours following, I felt intense disbelief, immense sadness and grief. I rang Laura’s boyfriend saying she had died. He wanted to see her too. Then we were involved in telling our respective families and Laura’s friends. A harrowing experience, especially telling my devastated mother.

The following day I had an overwhelming need to go to her house and gather as much of her personal belongings as fitted into four suitcases and several boxes: a symbolic bringing her home. Laura the hoarder, with a vast collection of clothes, some from primary school, shoes, plastic bags, coat-hangers, soft toys, and CDs. It was a relief of sorts when we received the diagnosis of Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC) 5 days later. A private burial for family and close friends preceeded a Thanksgiving Service in the village church. Joan’s mother, often needing a wheelchair, determined to walk to her place in the reserved pew. The church was packed. “The Girl With the Flaxen Hair” played as the family arrived then “Push It,” one of Laura’s favourite songs by Salt N Pepper - courtesy of an enlightened vicar conducting the service! The CD we had made still comforts us.

The greatest of many difficult decisions for me was whether to bury or cremate Laura and worrying what her wishes would have been. Stacey, her close friend, told us they had discussed this and Laura wanted to be buried so that “the worms could have a good meal”. The magnitude of my grief following Laura’s death was greater than previous bereavements. As a GP involved in people’s everyday lives and deaths, their illnesses and problems, I found it emotionally impossible to return to work for 8 weeks. Overwhelming and profound inertia pervaded every aspect of life. I remember these feelings now when talking to patients who have experienced loss.

Laura was the first grandchild, first niece, eldest cousin and loved by everybody. That she could just collapse and die was beyond comprehension. Life would never be the same again and we all still feel a great void. Laura’s grandfathers pre-deceased her but her grandmothers never recovered. I likened our experience to an endurance of the harshest kind. This has subsided over time but there is an emotional load that I have had to learn to carry. Ten years later, life goes on but is different because Laura is not in it any more.

Subtle and enduring losses: that I will never be the father of the bride, see her blossom as the gifted teacher she would have become, be a grandfather to her children.

Laura is always in my thoughts and reminders are everywhere; not least when “Push It” plays on the radio making me smile; or seeing the remains of the tricycle “Little Lamb” sitting on the garden wall which used to carry four children at high speed down the sloping drive, with two pairs of feet used as emergency braking; or the debris from the makeshift but strong tree-house I constructed in an old apple tree one day, when I should have been doing something else. Following her death we recognised there were no rules on how we should feel; supporting each other on the bad days - initially most of them. As for Matthew, he found life very difficult not having his bossy older sister around to advise, cajole and remind him of birthdays and anniversaries. Only now is life settling down for him.

Although we have always been able to talk about her, we can now do it more happily without that constant tug of grief. Her memory is still alive and everywhere and always will be.

We visit her weekly in the churchyard unless thwarted by bad weather, placing bought flowers in pots. Most weeks we also leave a small posy of our garden flowers so that her headstone inscription “Thy eternal summer shall not fade” is fulfilled. © Cardiac Risk in the Young 15

Rachael’s Story by Bruce Lord I was a confident, happy, outgoing, 48 year old father of three before getting the phone call that every parent dreads on March 2nd 2008.

It was the day everything changed. We were preparing a special Mothering Sunday lunch for the family. Little did I know what was about to happen. When my mobile went it was Eric, Rachael’s partner, wailing incoherently trying to tell me Rachael had suffered a heart attack in the Tenerife apartments’ swimming pool where they were on holiday. My wife Sandra froze. Rachael was dead.

I fell to my knees sobbing and punching the floor in grief and disbelief - how could my beautiful 24 year old daughter be gone? My youngest son, Nathan, came to the top of the stairs and I somehow told him Rachael had died. He was unable to comprehend what had happened and returned to his bedroom.

When my older son, Martin, and his wife arrived, Sandra told them Rachael had suffered a heart attack - she could not bring herself to say she was dead. Her face had a look of blank utter disbelief which I had never seen before in 26 years of marriage. I wailed, “How are we going to get through this, son?” whilst we just held each other and sobbed.

Family and friends took the news with quiet disbelief. My mother found it very hard having recently lost my father and brother. Now she had lost her grandchild, but she tried her best to support us.

Rachael had died from a cardiac arrhythmia and there would be no post mortem as this was due to “natural causes”; but I was required in Tenerife. My sister-in-law, Kay, bravely volunteered to support me as Sandra was unable to travel and we found the flight over, bursting with the happiness and expectation of holiday makers, almost unbearable. On my return flight, having identified the body, I got a tight horrid feeling in my stomach realising that I now had to prepare sharing in everyone else’s grief. Up to then I only had my own to deal with.

It was a relief when the coroner confirmed Rachael’s death would be investigated and a post mortem required. We needed to know why she died because we had to think of our sons’ and future grandchildren’s health. Sandra said that CRY could help with these tests and Rachael’s heart was sent to Dr Mary Sheppard at the CRY Centre for Cardiac Pathology.

We had no idea what she wanted for her funeral but were helped by Eric and her heart was buried when it arrived after the funeral, with her ashes. As far as possible we made sure all the immediate family were involved in Rachael’s funeral arrangements. Nathan wanted as little involvement as possible and was very withdrawn leading up to the funeral, which we delayed until the day after his imminent 16th birthday.

We had the music she loved entering and leaving the church and crematorium, and finished with “Thank You for the Music” by Abba, the first tune Sandra heard when given the news she was pregnant with Rachael. I found the funeral surreal. The church was packed, the service beautiful and the poems and eulogies heart-warming - but it was really just a blur. Someone commented about the huge sense of love felt in the church that day. Friends, family, work colleagues and even Rachael’s playschool and primary school teachers came.

16 © Cardiac Risk in the Young

After, we gathered at the local Liberal club where she went to playschool and it hit me that we had to somehow get used to life without Rachael. I didn’t think this was possible.

I found it so difficult that the world kept getting dark at night and light in the morning and was just carrying on - when our world had stopped.

We elected to have a closed inquest as the coroner agreed with the (Spanish) cause of death. Our GP explained the findings but it was hard sitting through our child’s post mortem and hearing how she had died. Immediately after we had so much support but as time went by people returned to their lives and hoped we were over it. Some seemed to view it like an illness that we would recover from! I don’t believe any parent ever gets over the death of a child.

It is awkward for outsiders though. People I meet ask, “How are you doing?” and “How are the kids?” but I can only talk about Rachael in the past tense and want to say, “How do you think I am doing?” When I hear people talking about their child’s milestones, university, weddings, grandchildren, I feel so sad for what my child has missed. Since her death I have learned that men and women grieve differently, which can put pressure on relationships and lead to misunderstandings. It might seem like I am fine but of course inside I am not. I want to shout at times, “Who elected me as the strong one?” and “I have lost my daughter too!” When one of us has a good day the other one doesn’t want to bring them down, so avoids talking about their feelings. Also, Sandra has been thrust into an all male household, which she is unused to.

As parents we recognise the loss of a child to be the worst nightmare, but I was unprepared for the complete change in my family’s dynamics. We are a tight-knit loving family but if there were issues Rachael was the go-between who advised her little brothers when they didn’t want to talk to us. If the boys were annoying Mum she would diplomatically get them to see Mum’s side. We don’t have this now and at times small things can seem so much larger. Things that would have seemed so insignificant before Rachael died seem to grow arms and legs. I think this is possibly down to the heightened awareness you feel after such a tragedy.

It’s strange that, depending on your mood, large events can seem trivial but trivial things can make you so angry. These thoughts and feelings have to be worked through and it is not easy. We forget the grief of siblings - our sons not only lost their sister but also the strong dependable parents they were used to and now in some ways feel they have to be the supportive ones. They knew we were feeling vulnerable and we needed them to be strong when they were feeling vulnerable too.

Rachael was my only daughter, my first born. She was the most beautiful, loving, talented, level-headed daughter any man could wish for. She had a small group of loyal friends but could not be bothered with the crowd. She loved her music and was a regular at Glastonbury. She was taken from us just when it seemed everything was going right for her with her own home, a new partner and doing really well at work. It still seems so cruel.

I look at the material things we have and would give everything to wake up one morning in a bus shelter somewhere, the five of us (plus daughter-in-law and the two grandchildren now) with just the clothes on our backs, to have her with us again.

I think I have become used to losing Rachael ‘the woman’ but will never get used to the loss of my little girl. I will never get over not hearing her requests for “give us a cuddle daddy bear”. © Cardiac Risk in the Young 17

Madeleine’s Story by Hugh Mulcahey Madeleine died in December 2000 when I was 38. She was 2 and had been suffering from flu-like symptoms for several days.

Jane, my wife, had taken her to the doctors a few times, only to be told she was being a neurotic mother. Madeleine hadn’t been feeling well all day and was very quiet. She developed breathing difficulties when I popped out to buy a Christmas tree.

The doctor suggested the local cottage hospital, from where she was rushed to the district hospital. At each stage a doctor had listened to her heart – the district hospital used a heart monitor - and she was given drugs for presumed asthma. She quietened down and went to sleep in the children’s ward with Jane lying next to her. I slept on the floor beside them. In the night Madeleine sat up, pulled off the sticky heart monitor patches, and died.

Jane was frantic as they tried to revive Madeleine for nearly an hour. I attempted to reassure her but could see through a small window in the door of our side room what was going on as more and more staff tried to bring our daughter back to life. I pleaded with God that this wasn’t real – it felt like a dream – I was going to wake up and find everything was still normal.

Eventually a consultant emerged. He held up his hands shrugging his shoulders. “She’s dead then?” I asked. He nodded, unable to break the news. Our parish priest, Monsignor Morgan, arrived and we went to see Madeleine. Her usually beautiful red curls looked bedraggled. She had a frown frozen on her forehead and a breathing tube in her mouth.

We said our prayers and went home alone in silence. I knew I had to look after Jane now, and to start telling people the news.

Our parents, in their different ways, gave us the strength we needed to cope. My father is a military man and never better than in an emergency. They rushed down from the Scottish Highlands and spent Christmas sharing our grief, making sure we ate, reminding us what we were supposed to be doing. Most of all they helped immensely by listening, never discussing their own loss of their grandchild. Now they are less inclined to talk of Madeleine – stirring up past memories is not their way. Jane’s more elderly parents live in Canada. They were distraught, her father repeatedly wishing it had been him.

Jane’s mother thoughtfully arrived around Madeleine’s birthday, supporting Jane packing Madeleine’s treasures into a trunk; greatly helping them both.

Madeleine’s half-brother, William (then 12), lived with his mother. His loss was awful. He seldom speaks of his little sister but doesn’t need to tell us how much he misses her.

When with us it seemed we simply reminded him of what he had lost. He was unhappy talking to his mother and got the love and support he needed from his closest school friends.

Jane was holding Madeleine in her arms as she died and for Jane, being there was better than hearing what had happened. The excruciating moment when the consultant shrugged his silent explanation unleashed howls of pain at the loss of her daughter.

There are no words to describe Jane’s grief. It was many months before my usually happy wife could manage even a smile.

The lead up to the funeral was a dreadful limbo. Madeleine died just before Christmas; her funeral was just before New Year. We rounded up our extended family whilst waiting 18 © Cardiac Risk in the Young

for the post mortem. In the days between her death and her funeral the sun never shone.

It felt appropriate. We live in a small tightly-knit village who rallied round. Christmas that year was suspended for the whole community. The choir spent it rehearsing for the funeral. Although Catholics, we live very close to the local Anglican church and knew the Vicar well. He allowed Madeleine’s funeral and burial to be at his Church. I dealt with the things you have to do - funeral directors, orders of service, trying to feel useful. My parents were quietly keeping an eye on things.

The funeral was a transition out of the awful un-Christmas that year. It had snowed and on a frosty, cloudless day the sun shone brightly – for the first time since Madeleine had died. Hundreds of friends, family and colleagues came. Madeleine was too young for it to be the celebration of a life well lived. It was a profoundly sad occasion, punctuated by the sobs of the congregation. Monsignor Morgan led the service with the Vicar at his side. The music was dignified and formal and I felt this was the first day of getting to grips with Madeleine being gone. I focused on helping Jane and William. Someone remarked it seemed like a film as we processed in silence to the grave-side, crunching through crisp snow. It was all too real to me. She had finally gone.

Immediately after came the support of friends and letters from people I hardly knew, often sharing previously unknown loss. Later was the emptiness. The thought of getting on with life without my beloved daughter was sometimes overwhelming. A household who loved music didn’t listen to music for months. It was a long time after before I allowed myself to laugh.

The conclusive post mortem of dilated cardiomyopathy meant there wasn’t an inquest.

She had had no chance of survival. The failure of numerous doctors to identify her illness did not contribute to her death. The pathologist, Dr Gould, was a brilliant, compassionate man; the single most important person in helping me deal with my loss. He explained Madeleine’s condition, and the possible family implications.

The main impact Madeline’s death has had on me is to realise how fragile life is. Live it while you can! I have worked as a bereavement supporter for CRY and am now Chairman of the Board. Initially, Madeleine’s death had a profound impact on our family and friends but I worked hard at making sure people knew it was OK to talk to us. Now I don’t really notice any difference except when close friends comment on an anniversary.

It is impossible to say whether our loss has changed our relationship. Jane and I treasure our son Freddie (now 8), think life is for living, and share a deep-down pain that cannot be explained to anyone who has not suffered the same loss. I’m not sure whether that makes us any better or worse or our relationship weaker or stronger.

Until Freddie was born I felt we were objects of pity but now I mention Madeleine to keep her memory alive. Jane is better at talking about Madeleine – she’s not British. Freddie, who never knew Madeleine, likes occasionally to look in her “treasure” trunk and ask questions about his older sister.

At only two Madeleine was wise well beyond her years. She was a beautiful red-haired child with an impish sense of fun and an unquenchable curiosity. Her zest for life remains an example to those lucky enough to know her.

She is missed not just because she was so young, and is gone, but because she was Madeleine. © Cardiac Risk in the Young 19

Scott’s Story by Stephen Rennie At 10.10am on Friday 6th March 2009 the world was still a happy place. One minute later our world changed with the phone call that “Scott has collapsed but the paramedics are with him”. I never thought to ask if he was still breathing, why should I? Scott was a GB Rower training three times a day. Indestructible. Two hours later, I, Stevie, Lee, Gemma (Scott’s girlfriend) and Henry (Scott’s best friend) were standing by his dead body in a pathetic waiting room in Kingston Hospital. Scott had died instantly. He looked so normal, still warm, unreal. I had no idea what true shock and numbness felt like until I experienced this.

The next few hours were a haze. Phone calls, disbelief, what next? Scott was 25, training for the Olympics. We stand looking at each other, occasional screams, a feeling of hopelessness, a growing sense of guilt - could this have been avoided?

Life without him is unthinkable. I am not prepared for this. How, why did he die? Why an inquest? Don’t disturb him. Leave his body alone. Please just bring him back. Maybe numbness is the body’s defence for all these questions that I am not prepared for?

Everyone wants to help and we realise we are starting to judge people on how they react to the news. Who has been in touch, who hasn’t. Our world has changed forever and we don’t know how to deal with it, with each other. How much pain can the human body take? The Rennie family is in turmoil. Different views on everything - how he died, how he lived, what he liked, the inquest, burial or cremation? How do we stay together and strong for each other?

People care, friends can be brilliant. Disbelief is a common theme. Grandfather wants to swap places; he is 83, has had a good life - take him. We all agree! Messages, letters arrive. Young and old. This outpouring of grief, joy and fantastic memories of great times with Scott, help get me through each day.

There are still real issues, our daughter is struggling. We don’t realise how difficult it is for her and for us to show our true feelings. How we interact with one another when emotionally unstable is a real problem. The simplest of tasks seem a challenge and minor comments can be misinterpreted.

The compass guiding me through life has been switched off. No map, no reference points. I cannot come to terms with the death of my child. We have been brought up to think a funeral is for old people. My brain does not want to accept anything else. Who cares what music is played? What flowers? Nothing matters anymore. Life has lost its purpose.

If a funeral can go well then this one did. Pershore Abbey was full. I didn’t realise how important this part of the grieving process was until I spoke to people during and after.

Began forgetting my pain, realising just how many others were suffering too. We were not alone and will never forget all those young faces looking so distressed. For some, a funeral is seen as the end. For us it was just another phase - still numb, in shock, expecting him to walk through the door. My mind played tricks. It was all a dream.

People want to move on, talk about other things, but we cannot. Reading other people’s views and experiences and sense of loss helps lighten the load; but it cannot teach me how to deal with my wife or daughter, who blame themselves for not pushing Scott to 20 © Cardiac Risk in the Young

have more medical examinations. Most men are not good with feelings and nothing is more sensitive than this situation. There is a raw nerve around every corner. It is so easy to say and do the wrong thing; and this is one of the strangest conundrums - that nothing seems important anymore, yet everything matters.

At a time when I just wanted to curl up in a corner and hide away from the world, I still found the energy to argue about the silliest issues. Love got us through it. Love for Scott and each other. Without it I would sink. Knowing we need each other and that we all feel the same helps to understand one another’s point of view. Love kept us together, sharing the worst but helping us find glimpses of happiness that are still there. Yes, we are still allowed to enjoy life, there is a future, we can still laugh. The sun will shine again.

I lurch from hope to despair as reality kicks in, reminding me that serious issues lurk, like inquests and pathology reports and tests. Is it genetic? Could our daughter, Lee-Anna, be at risk? CRY screening comes to the rescue and our knowledge of heart conditions is shown to be non-existent. I did not realise how medically ignorant I was. I hadn’t a clue how the heart worked, the electrical impulses required to make it pump, how much we still have to learn. In Scott’s case we had differing expert opinions creating uncertainty and heated debate, but the truth is we will never know.

We must have said “what if” a million times and will continue to say it - can’t help it, every day, every Friday, every anniversary, every birthday, every Christmas, every time we read about another young death.

This emotional roller coaster is hard to deal with and pushes the strongest relationships to the very limit. That couples, families and friendships can fall apart is no surprise. It makes me feel inadequate. Men are tough, can cope - but don’t. They say “time is a great healer” but this pain does not heal. A huge part of my life has gone and much as I try and concentrate on the positives, there is a hole that cannot be filled.

My wife has kept me sane and although we have all gone through this, for a mother to lose her child is just wrong. There was a bond between Scott and Stevie that should not have been broken. It was unfair and cruel watching her endure such sorrow. Stevie has, more than anyone, kept us together and moving forward. I know I have stretched our relationship to breaking point and still she would not give in and for that I will be eternally grateful and in her debt.

Scott inherited the very best of his mother’s easiness and attitude to people and willingness to help others. At school it was well known that people sought him if they wanted help. When ‘Head of School’ was chosen in his last year, it was unprecedented that both teachers and pupils voted unanimously for Scott. That is how he was with his family too. It was only after he had gone we realised how much we sought Scott’s opinion. He was our rock.

My final words are ones Scott wrote in a ‘Year Book’ he and his best friend Oliver created for everyone in their year to comment in: “Everyone tells you that your school years are the best years of your life. Now, as I come to the end of mine, I realise how true these words are. If these were to be my last years I would not feel short changed”.

Sadly, son, you most certainly were. © Cardiac Risk in the Young 21

Zoe’s Story by Peter Teale On Monday September 14th 2009, the last thing I reminded Zoe to do was to text me when she had dropped the dog off at the groomers. Later, my wife Julie’s colleague phoned telling me to go home as Zoe’s sister Meghan had called saying she couldn’t wake Zoe up.

The journey seemed to take forever. People seemed to be driving so slowly. Traffic lights seemed all on red. Queues seemed relentless. I kept thinking different things: was Zoe playing a trick on Meghan? Was she in a coma? What had caused her to go into a coma? Had she passed out? Had she gone into a deep sleep?

Arriving at my estate fear hit me. Julie’s car was parked well away from our house. Two police cars were outside, telling me something was dreadfully wrong. A policewoman inside explained Meghan had found Zoe dead in bed. Julie and Meghan were in pieces.

I went numb, and can only remember saying “Why? What’s happened? She’s young and healthy”. I wanted to see her as I didn’t believe it. I wanted to be comforting Julie. I wanted to be next door where the neighbours were with Meghan.

The undertaker arrived, politely asking if he could go to her room. We asked if we could see her. Those stairs seemed endless. My heart pounded and I held Julie’s hand as we entered. I had never seen anyone dead before so didn’t know what to expect. So shocked I couldn’t speak. Julie was sobbing. After a few minutes the undertaker asked us to leave. I will never forget how cold she was when I kissed her forehead. When they said they were taking Zoe to the mortuary I remember asking them to “please look after her” which they assured me they would. That afternoon is a blur. The police left; Meghan returned. 23 years of caring and loving Zoe had gone in an instant. I still didn’t believe she had died. Julie and I walked the dog speaking little but receiving phone calls and messages of support.

After a long night when no-one slept came the first morning, when it hit me. I couldn’t sit anymore so put some washing on the line and picked up a piece of Zoe’s clothing. She must have washed it on Monday and the tears started flowing. I felt I had to quickly wipe them away as I needed to be strong for Julie and Meghan, my motto until the funeral. One of our hardest discussions was what we wanted for Zoe’s funeral, and whether to bury or cremate her. Not a discussion we had ever had. Choosing her coffin was heartbreaking.

I felt I should be arranging my 23 year old daughter’s wedding not her funeral.

The next day the Coroner’s Officer explained they needed to conduct more tests and that it was probably a condition called SADS when sometimes the cause of death was never found. I couldn’t believe this. No one dies without a reason. Julie found CRY and I spoke to Alison who was fantastic and talked me through what to do and expect.

Returning to work helped. My colleagues were great listeners and I could talk about Zoe without everyone being in tears. They were my rock and I will always be in their debt.

The vicar visited us to sort funeral arrangements and we got everything in place, but needed a cause of death before we would let Zoe be buried. Alison suggested writing to the Coroner requesting Zoe’s heart be sent to Dr Mary Sheppard at the CRY Centre for Cardiac Pathology. A week later we wrote again. The Coroner’s Officer said the cause of death was cardiomyopathy and Zoe was being taken to the undertaker. I said I wanted a second opinion and contacted Mary Sheppard’s office where a lovely lady explained they 22 © Cardiac Risk in the Young

would need Zoe’s histology slides. The Coroner’s Officer told us the person who had them was away and suggested burying Zoe without her heart, with a separate ceremony later. I protested that Zoe was all heart, and her heart was going to be buried with her.

I phoned daily and they did not arrive. Eventually they sent slides of someone with liver sclerosis. So Mary contacted the Coroner, Zoe’s heart came, and was repatriated within the week. Mary found the cause of death wasn’t cardiomyopathy but an abnormal arrhythmia.

The funeral home were wonderful, allowing us to see Zoe during this time. The final Friday she looked very peaceful, quite different from the day she died. Her hair combed and eyes shut with a bit of make up on. I couldn’t feel or say anything. I kept staring at her hoping she would open her eyes and give me that beautiful smile she had. I kissed her forehead, but she was just so cold and I was so helpless.

Her funeral was on November 11th, nearly 2 months after she had died. Because of the long delay I was in denial, believing she hadn’t died at all. I was unable to be in the house alone and on evenings when Julie and Meghan were on a late shift I would stand on the doorstep praying they would hurry. A weird feeling.

Meghan and Zoe’s friends spent the night before the funeral with us. There was silence at our house except for the sound of sniffling and blowing noses. Meghan coped quite well but later it caused flashbacks, anxiety and real down days. I took a deep breath and held Julie and Meghan’s hands as the hearse arrived and we walked with an undertaker to the car. When Zoe was pulled out of the hearse, and her friends carried her in on their shoulders, my emotions hit me like a lead weight. I finally cried and didn’t want to hide my tears from anyone. I felt I had been so strong for my family, but this was my time and place to let it all out.

The church was packed solid when Zoe was carried in to “Ave Maria”, a song she loved.

The service was beautiful, the vicar so nice and tributes were made by friends and her Nan. She was carried out to Michael Jackson’s “Gone Too Soon” and El Divo’s “Amazing Grace”. Friends and family placed roses on her coffin, whilst white doves were released, capping a fitting send-off for a special person who was so highly thought of.

Christmas, Birthdays, Mothering Sunday and Father’s Day have never been, and will never ever be, the same. Time has not made it better or easier. I try and remember our good times and smile at the laughs and practical jokes we played. I am happy Zoe went on some lovely holidays, had most things she wanted, and had an adoring Mom, Dad and Sister.

We all grieve in our own way but are there for each other. Meghan takes a day at a time, as we do. For Julie, the breaking of the mother/daughter bond has been devastating. I can talk about the day she died but Julie cannot. She still thinks she will wake tomorrow and find the bad dream over. She hides her pain but at times it really still shows.

Zoe was kind, generous, “lived her life to the max”, loved her family, dog, friends, holidays and working hard. Her laugh was so infectious, some evenings she would have a DVD playing and the roar of her laugh had me laughing even if I was not watching it!

She lived for Christmas, her favourite time of the year, planning presents well before the clocks went back.

I have not just lost a daughter; I have also lost my soul mate. © 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.”

24 © Cardiac Risk in the Young

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: www.complaints.judicialconduct.gov.uk/ makeacomplaint/ 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: inbox@ojc.gsi.gov. uk 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: www.complaints.judicialconduct.gov.uk/makeacomplaint/ 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 www.lgo.org.uk/making-a-complaint, 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 St George’s Hospital London, 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 16 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 cardiac 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.

Professor Mary Sheppard MBBCh FRCPath 26 © Cardiac Risk in the Young

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

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 there could be many more than the 12 young sudden cardiac deaths every week.

The CRY Centre for Cardiac Pathology (CRY CCP) is funded by CRY and based at St George’s Hospital, Tooting. The centre allows coroners to refer cases directly 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 3 to 18 months for answers after their tragedy.

The CRY CCP works closely with the CRY Centre for Inherited Cardiovascular Conditions and Sports Cardiology at St George’s, to ensure that families are referred quickly for cardiac testing when an inherited/genetic cardiac condition is identified as a possible cause of the sudden death.

Professor Mary Sheppard, one of the world’s leading cardiac pathology experts, oversees the running of the CRY CCP. Professor Sheppard established the centre after a grant from CRY in excess of £500,000. The grant was 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. Secretary 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 founder and former Chief Executive of the charity Cardiac Risk in the Young (CRY). 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 life-threatening 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.

Professor 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 Wolff-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 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.

Telephone bereavement support is available to anyone over the age of 18 who has been affected by a young sudden cardiac death.

The support offered with CRY’s Bereavement Supporters is for up to six months, however there is no pressure or obligation. Some people find they would just like a few calls, whilst others would like to talk to their Bereavement Supporter for the entire six-month period.

CRY’s offers group support for family and friends following a young sudden cardiac death in various methods; A National Family Bereavement Support Day which can be attended by family members (18+) who have lost a young person aged 35 or under; Annual walks in London and in Durham, giving families the opportunity to come together to remember young people who have died suddenly; and online support via Facebook groups, where people (18+) can connect and share experiences.

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 bereavementsupport@c-r-y.org.uk

© Cardiac Risk in the Young 29

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