Young Sudden Cardiac Death: A Mother's Grief

Jenny and Adam both died of SADS

Young Sudden Cardiac Death: A Mother’s Grief

Editor Alison Cox MBE, CRY Founder and Chief Executive Sub-Editor 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 www.mumsgrief.org.uk Phone: 01737 363222 Fax: 01737 363444 Email: cry@c-r-y.org.uk The production of this booklet was made possible by a donation from the Kirkby Foundation

With thanks for their contributions to: Michael Burgess OBE Professor Mary Sheppard MBBCh FRCPath First edition - 2015

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.

Maralyn Bowen: CRY Representative & 10 years a bereavement supporter “My son suddenly died of a cardiac arrest. Having him snatched away so cruelly afterwards left me feeling cold, empty, and alone. As if a part of me is always missing. Not getting the chance to say goodbye and I love you, can leave a mother craving to see her child just one more time to express her devotion that will be forever. CRY gives much needed support during this absolutely dreadful time.” © Cardiac Risk in the Young

Contents Foreword

2

Thoughts and Feelings - Extracts from their Stories

3

Mums’ Stories

4

Sarah’s Story by Ita Booth

4

Jack’s Story by June Boulton

6

Nathan’s Story by Angela Butler

8

Matthew’s Story by Sue Dewhirst

10

Philip’s Story by Sue Fisher

12

Shamil’s Story by Farah Hamid

14

Jenny and Adam’s Story by Jane Lambert

16

Andrew’s Story by Ruth Lowe

18

Richard’s Story by Nicola Merriman

20

Gary’s Story by Lesley Pope

22

The Role of the Coroner Following a Young Sudden Cardiac Death

24

The Role of the Expert Cardiac Pathologist Following a Young Sudden Cardiac Death 26 The CRY Centre for Cardiac Pathology

27

About CRY’s Bereavement Support Programme

29

The 10 authors of these stories:

© Cardiac Risk in the Young

1

Foreword The agony that obliterates every corner of consciousness in the moment she gets the news. And after - the silence, numbness, barren despair. The grief of a mother dealing with the inexplicable sudden death of an apparently fit and healthy child, with no time to say goodbye and a coroner’s verdict of “natural causes” to cope with, establishes young sudden cardiac death at the cutting edge of grief. To then learn that her child was carrying a genetic undiagnosed heart condition - leaving other children at risk until they have been screened - and that death is instant with little chance of resuscitation, leaves her not only dealing with her tragedy but also living with the terror that they too could be affected.

Ramifications of her struggle to manage can have a wide ranging effect on the family.

Craving to hear or say her dead child’s name to keep their memory alive can result in her subconsciously excluding the needs of other family members. Wrestling with a deep-seated guilt that she has betrayed her dead child by failing to protect them, and the unaccountable crash of confidence that comes in its wake. Nightmares challenge her sanity, her competence, and her place in the empty new world created in the slipstream of her tragedy. No longer belonging. Stuck between death and life. And finally the expert ‘pretending’ that everything has come under control, in the attempt to normalise life for others, also suffering, to reduce their anxiety and concerns.

The impact on a mother of her child’s death is well documented. It is now properly recognised that her child cannot be “replaced” by mother having another baby, “time does NOT heal” nor will mother one day “move on.” It is my hope that this booklet will not only help affected mothers, but also others to better understand why mum has such a massive battle to reinvent herself. Why her endeavours to “reconstruct” her life must first work past the “broken woman” she has become. Family members all grieve differently and in her battle to help she can be swamped by mourning the intolerable loss that frequently, and vividly, encapsulates her with feelings so raw as to defy survival.

~~~

Taken from CRY’s Bereavement Support leaflet: The death of a seemingly healthy child or young adult is so out of order with the sequence of life that its effects are devastating.

It can be hard to believe that this weight will ever be lifted from you. Grief affects not only the emotions - other consequences can include exhaustion, feeling sick and not being able to eat or sleep. These reactions are completely normal at times of intense stress and shock.

It could be important to talk to someone about your feelings, no matter what they are. It is not always easy to do this with people who are suffering from the same loss. Talking to someone outside your immediate family is often the most helpful way forward.

These feelings can go deep inside. If you bottle them up, thinking you have them under control, they will probably resurface later. Expressing such feelings, recognising them and thus including them in your life can help in your life’s journey to reconstruct a world that you know will never be the same again.

Alison Cox MBE, CRY Founder and Chief Executive 2 © Cardiac Risk in the Young

Thoughts and Feelings - Extracts from their Stories Time for me has not been a healer. Time has however taught me how to live with my intense grief. I have no choice. I am without Sarah in flesh and bone. I wear my grief as a second skin but Sarah is in my heart and in my head every waking minute. Time moves on, life moves on, but grief, like love, has become forever a part of who I am.

Life is not the same, and never will be. I miss him every day and will until the day I die.

There are times when I feel that I am just going through the motions of the day as that is what I have to do to get through to tomorrow, and next week. Some days I can cope better. Life has become a bit of an act at times as I do quite a lot of pretending. . .

Family and friends started arriving. My brother brought my parents, and my nephew brought Phil’s dad, all of whom cried for their grandson and wished it were them that had been taken. Our house was full of people numbed into silence, as I gave a statement to the police of the day’s events, and my oldest son lay lifeless on his bedroom floor.

Actively doing things in his memory has helped – to a point. Matthew’s bedroom is still exactly as he left it that Thursday morning. The bed unchanged, his favourite guitar is on its stand beside it, the can of Coke unopened, the 2012 Sale Sharks calendar on the wall and his team photographs for football, cricket and rugby filling the walls.

I will remember Phil as when I last saw him happy, sparkling on Father’s Day. The warmth of the hug he gave me will remain forever. He played with his sons, eyes twinkling.

I continue to see his smile reflected in their eyes. He looked at Kate with that deep connection of a loving man to his wife. It was a good day.

Losing Shamil has changed everything in my life and I feel that I don’t totally belong in this world anymore. I hover between wanting to be with Shamil and Omer, stuck between death and life, not fitting in either place, not being able to take anything for granted again.

But then, most unbelievably, my greatest fear was realised. Adam died. I had lost both of my children. It is difficult to express the horror following the phone call from his fiancée at 3 am. Dashing to the hospital, being shown to a room, knowing what would follow.

Resuscitation had proved unsuccessful. Like Jenny he had died in his sleep. Everything was now lost in a split second. It had happened again.

The intensity of the sadness I feel at Andrew’s loss is the same as the love I felt for him when I first held him in my arms. Just as this love will never leave me, neither will the feelings of loss, now part of who I am. There is an Andrew shaped hole in my heart which will never be filled. The loss remains the same but life has got ‘bigger.’

2 years on, looking back, I realise that I was in a big protective bubble after Richard died.

Weirdly the suffering has made me a stronger person. This terrible ordeal made me want to do positive things to keep him alive in our hearts by saving other young people and preventing another family going through the same heartache. . . .the feeling of loneliness was at times overwhelming that first year. Strangely I often preferred to be on my own, craving peace and quiet. Sometimes I felt I wanted to run and keep running but understand now it was the reality of all that had happened I was trying to escape from. I thank God for my husband and children.

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

Sarah’s Story by Ita Booth When my husband Robert and I celebrated our 25th wedding anniversary we reflected on how sweet our life was and how fortunate we were to have 3 lovely children. However the following weekend our perfect existence was torn apart.

In the early hours of Sunday morning June 20th 2010 a police sergeant called at our door with the news that our beautiful daughter Sarah was being rushed by ambulance to Ulster Hospital. She uttered the chilling words “your daughter has a very faint pulse but there are no respiratory signs”. Sarah had been at an end of term sleepover party and told a friend that she had severe back pain so was going to lie down. When she was later checked she was unconscious, an ambulance was immediately called and CPR was given.

At the hospital a nurse told us that they were working on Sarah and that we could wait in a small private room. About 20 minutes later a team of doctors and nurses came and informed us that they been unable to save our sweet child. I have trained my brain not to go back to the events of that horrific night. The most terrible experience I have ever had was telling my daughter Claire (19), my son Owen (16) and my friend Valerie, when they arrived at the hospital, that our precious girl was gone.

The few days before the funeral were a nightmare as we struggled to come to terms with what had happened. Robert had to organise everything as I was overcome with grief and just lay in bed crying, not wanting contact with anyone. One of the worst things Robert has ever had to do was to tell his sister Christine who was like a second mother to Sarah.

I was oblivious to what was going on around me, numb and in total shock, unable to process that Sarah was gone. I remained so for the next 2 years, and still sometimes even now feel this way. Sarah’s funeral was the biggest that the local parlour had ever dealt with, a testimony to how popular our girl was. There was no inquest but sudden arrhythmic death syndrome (SADS) was given by the pathologist as the cause of death.

Claire and Owen were distraught at the loss of their younger sister. Somehow Claire managed (with immense difficulty) to complete her university degree, even though she was coping with a diagnosis of (and treatment for) long QT syndrome herself, which was diagnosed when the family was screened after Sarah died. Owen needed to remain for a further 2 years at the same school which he and Sarah had attended so that he could finish his education. He steeled himself daily to cope with seeing Sarah’s friends in school. These were nightmare years for both of my children. My own parents were bereft at losing their youngest grandchild so suddenly and without warning. The following year my father died of lung cancer which left my mother grieving the loss of her husband, her grandchild, and sadly saying she felt she had lost me too. I had also lost me.

What impact does my loss have on my life now? My heart is literally broken in a million pieces. The soul destroying agony of your child dying can only be understood by those who have endured it. 4 years on I still can’t believe it. Only a parent could understand the unique and powerful bond that you can have with your child. The absolute undying love and monumental desire that roars like an open fire inside you to protect that child at all costs.

I was unable to return to work as a civil servant and had to be medically retired. I get up every morning with the exact same gut wrenching feeling I had the day my precious Sarah died. The only difference is I am more skilled at hiding it and much more used to 4 © Cardiac Risk in the Young

the agony of my broken heart. The shock has somewhat lessened, but I do still find myself thinking... I cannot believe this has happened. Losing my child changed who I was. I look in the mirror and my eyes appear haunted. My views on the world have changed. Things that were once important are not important and vice versa. I am mourning 2 deaths, that of my daughter and that of my former self. What I have endured, losing my little princess, has been so unimaginably horrific that I don’t think I would survive something like it again. Sometimes and without warning intense grief reappears with a vengeance and I am left powerless. Living with the unpredictability of my emotions is a part of losing Sarah. I never know when the pain is going to hit me hard and knock me off my feet!

My grief is that inner voice of pain, that comes alive at the most unsuspecting times.

There is not a single minute of my life when this loss is not etched into every fibre of my being, whether it is in the middle of a busy day or those choking moments of grief in the solitary dark of night. Time for me has not been a healer. Time has however taught me how to live with my intense grief. I have no choice. I am without Sarah in flesh and bone, wearing my grief as a second skin. Time moves on, life moves on, but grief, like love, has become forever a part of who I am as Sarah is in my heart and head every moment of everyday.

Fortunately Robert and I had a very strong marriage before we lost Sarah but occasionally our relationship becomes strained because grief impacts at different times and in different ways. We have created a new life and certainly not the one we had planned.

Family life has changed too because our family is not complete anymore. Before we lost Sarah, we loved our family meals together… chatting about the events of the day.

Almost subconsciously we stopped doing this because there was always that feeling of someone precious missing. I find too that there are now certain foods I can no longer eat.

I cannot eat steak because that was what Sarah had enjoyed with us the night before she died. I can no longer eat a fried egg because I taught Sarah how to make the perfect fried egg and she loved them.

The support from some family members has been incredible, but from others has been non-existent and distressing. Some people, when they cannot avoid me, tell me ”you are looking better” whilst older relatives unhelpfully suggest that ”it’s time to move on and come to terms with it.” The once happy word “anniversary” has taken on a different meaning for my family and I. We are totally devastated and permanently in mourning.

Sarah was my youngest child, my baby. She had a wide circle of friends, had achieved a high level in ballet, attended speech and drama classes, and was a very hardworking and academic pupil. She was extremely focused and knew exactly what she wanted to do with her life. She was fierce, she was strong, she was talented and she would have made an impact in whatever career she pursued. She had already talked about becoming a journalist or a lawyer. She always had something to say. Yes she had flaws but that was ok... don’t we all? When she was down, she got right back up. She was unstoppable and she took life, the good bits and the bad bits, with a smile.

When you met her, you never forgot her. She was larger than life.

Sarah was beautiful. She was beautiful for the way she thought.

She was beautiful for that sparkle in her eyes when she talked about something she loved. She was beautiful for her ability to make other people smile even when she was sad. She was beautiful deep down to her soul and I will miss her and long for her until I take my last breath.

I love Sarah to the moon and back… just 15 …forever young. © Cardiac Risk in the Young 5

Jack’s Story by June Boulton Jack was 17 when he died during football training at the local club.

He had been promoted to the first team and was preparing for the 2009-10 season. A friend of mine called, warning my daughter Lucy that ‘something bad’ had happened to Jack whilst training, and that she was coming to collect me immediately.

I assumed Jack must have broken something, but the panic that Lucy had sensed from my friend made me anxious. Arriving at the pitch, watching the club first aider trying to do CPR on my son, was like nothing else I have ever experienced or want to again. I was shocked, nauseous, utterly disbelieving what I was seeing. I felt useless looking on as my world fell apart. The paramedics arrived at the same time, and I convinced myself that with them, and all the right equipment there, Jack would be okay. I kept telling him so, trying to persuade myself that he would be alright.

Eventually the ambulance left, with us, for the hospital, and all the while the paramedics were shocking Jack. However their faces told the true story. No matter how hard or long they tried, their efforts were fruitless. My husband Dave arrived separately as Jack’s stretcher was being moved inside from the ambulance. This devastating sight almost precipitated Dave’s complete collapse. He was devoted to his son and misses him dreadfully. I have no words to describe my feelings in recalling the memories of that horrific time.

We returned home late from the hospital so decided to tell the family in the morning, knowing this would be terrible for everyone. They fell deadly quiet, and seemed to go numb. It took days to sink in.

Lucy was with me as the crisis unravelled and has been extraordinarily strong and supportive. She was younger than Jack and always looked up to him. The day after his death she insisted on looking at all his photographs, printing off recent ones to put up in her room. They were very close and it hit her hard. She responded by dedicating herself – almost obsessively – to her studies and found that becoming so absorbed in her work helped her to deal with the anguish of her grief.

We greatly missed both my sister and Dave’s sister and the many close friends who were away on holiday at the time. My brother was wonderful, regularly visiting us to ensure we were eating and helping in any way he could. Jack’s passing was the day before the AS results for him and his year group were due and his distraught friends brought their unopened envelopes to our house. They had been planning their exciting futures, but the gaping hole Jack left meant nothing was the same any more.

Prior to the funeral we didn’t turn anyone away, which seemed the right thing at the time.

Looking back, I can see it contributed to our total exhaustion. The pathology investigation at the hospital meant a delay in releasing Jack to the funeral directors but it helped being able to see him once he was there. We found it difficult deciding whether Jack’s heart and samples could be retained for further pathology tests and it added to our anxieties. The funeral director greatly helped us deal with everything.

Dave, Lucy and I spent time with the funeral director and local minister deciding how we wanted the service. Jack’s friends offered help too, and some carried him into the church whilst others spoke movingly of their friend at the ceremony. A friend took on the job of 6 © Cardiac Risk in the Young

service sheets and suggested a montage of Jack’s life which we have now mounted on our wall at home. Close family friends were invited to take a role if they wanted. We chose the hymns together and displayed our treasured montage of pictures at the wake.

This was held at the golf club where we were all members, and Jack was Junior Captain so it seemed appropriate. Everyone was welcome.

The lead up to the day of, and the actual funeral, felt surreal. I was shaky and anxious.

I cannot find a way to express my emotions. Words seem hollow when the pain went so deep. I don’t remember clearly, but know I endeavoured to speak to everyone. I do recall the sunflowers clearly though. We grew them every year admiring how tall they got. The brightness of the brilliant yellow petals shone out that day, the worst one of our lives. They have now become “Jack’s flower” to all of his friends. Afterwards we were exhausted – wondering, now what? How would I/we be able to manage without Jack? It became a case of putting one foot in front of another and finding another day had gone by, then a week, then a month, even though none of us could remember how.

We were not involved in the lead up to the inquest and this whole period seemed a blur. Dr Graham Stuart at the Bristol Royal Infirmary did our heart tests shortly after the inquest and the genetics department asked us to consent to them retaining Jack’s heart and samples to help future research. A very difficult decision but one which, after much consideration, we agreed to. We did not attend the inquest where a verdict of natural causes was delivered. Our GP went through the coroner’s report with us explaining the terms used but we were totally baffled how no explanation was given of how Jack, who was fit, active and totally well with no symptoms, had died.

Jack’s death has had a devastating impact on our lives. Life is not the same, and never will be. I miss him every day and will until the day I die. There are times when I feel that I am just going through the motions of the day as that is what I have to do to get through to tomorrow, and next week. Some days I can cope better. Life has become a bit of an act at times as I do quite a lot of pretending because I do not want to bring down others in my life.

Dave and I understand each other very well and talk a lot about our feelings. We try to plan things we can look forward to, whether it’s a simple meal out, a drink at the pub with friends or a holiday. Our relationship has changed and I think we are more protective of each other than before.

My family were supportive at the time but seem to have moved on with their lives. There are people who have been surprisingly supportive and others who have disappointed me and ‘moved on’. I am much more choosey these days about who I spend time with and feel relationships need to be a joint effort! I have found new friends since losing Jack, and am constantly astonished how very kind some are, whilst others are cold or perhaps find me too difficult to deal with?

Jack was amazing… from the day he was born until the day he died. Energetic, quick thinking, witty, but quiet with an inner confidence. He had both sporting and personal skills, and wise little sayings that popped up out of nowhere.

He was gentle, compassionate and mature from a very young age.

He had high principles, always displayed fair play and seemed to be everyone’s friend! He was definitely one of a kind.

I feel the pain of his loss acutely every day. © Cardiac Risk in the Young 7

Nathan’s Story by Angela Butler 22nd February 2006 was a normal Wednesday morning. My husband Phil and I went to work, our son Josh to school and Nathan, 16, had a day off college and was still asleep. I arrived home around 3.45, wondering why I had not heard from him. The house was quiet so I presumed Nathan was out but was surprised to find my note still in place in the kitchen. I went upstairs which was when the whole horrible story began, and our worlds fell apart. Nathan was lying motionless on his bedroom floor, partially dressed, and obviously dead. I rang 999 and began frantically trying to resuscitate him.

Within minutes our home was taken over by paramedics, doctors, and police. It became a crime scene whilst they investigated how and why Nathan had died. I rang friends who came straight round and contacted Phil and the rest of the family.

Josh arrived from school, having jumped from the bus and run home after seeing all the blue flashing lights outside our house. He crumpled into a heap on hearing why and we were all transported to a place where none of us wanted to be – in “limbo” wondering why our lovely son and brother had been taken from us – whilst officialdom carried on around us. Family and friends started arriving. My brother brought my parents, and my nephew brought Phil’s dad, all of whom cried for their grandson and wished it were them that had been taken. Our house was full of people numbed into silence, while I was giving a statement to the police of the day’s events, and while my oldest son lay lifeless on his bedroom floor.

How could he be dead? How could this have happened? What was wrong? Questions, questions whizzing round my head which I thought would explode. The days blurred together. Josh slept on a mattress in our room, and we pretended to sleep to try to reassure Josh. I cried, Phil cried and we all just sat drinking never ending supplies of tea.

6 days after Nathan’s death we sat in our lounge with the undertaker planning his funeral.

I couldn’t bear the thought of Nathan being alone so we agreed to bury him with his Nana Betty, who’d died 6 years previously. We chose hymns, flowers and reserved pews for his many friends. They were as important to him as we were, and I wanted them involved in the day as he would have wished. On the surface we were coping well but inside we were crumbling and I just wanted to run away and not be part of this nightmare.

The day of Nathan’s funeral Phil and I agreed to be strong for Josh’s sake. We didn’t want his memory to be of his mum and dad in bits on the floor of the pew – which would have happened if we had lost control. So we supported each other on the worst day of our lives, saying goodbye to Nathan. We sang along to the hymns, and smiled as Nath’s cricket captain read the eulogy and told funny stories about his vivacious personality.

His cousins read poems about the importance of family and the service was as beautiful as was possible. 1,000 people came and the day was unreal, as if we were watching it.

After we went to the cricket club where he had spent many happy hours. The days that followed were filled with family and friends organising things to try and help us come to terms with what had happened. Josh returned to school, Phil to work and to the outside world we were “doing well”. I stayed off work for 7 months. My friends took me out and about. Anything to keep me from “going mad”. Our coroner was in touch the day after Nathan’s death, and contacted us regularly informing us of the post mortem result and subsequent toxicology results. I wanted to ascertain as far as possible what had caused Nathan’s death and do everything to ensure that Josh was tested and protected.

Nathan’s inquest confirmed death was from hypertrophic cardiomyopathy. I had to give evidence on oath – another event which had to be done in the aftermath of our tragedy.

8 © Cardiac Risk in the Young

Our family had changed forever and began the journey of rebuilding our lives without Nathan, a difficult, sometimes impossible task. We’d all been thrown into a pit of despair and felt we’d never be able to climb out. I felt responsible for keeping everybody together and tried to be composed with family and friends but when alone I just couldn’t stop crying for the son I’d lost, and for Josh, so vulnerable at 13, who had lost his brother and best friend. Mums can usually help ease their child’s pain but I could only love and care for Josh. Grieving was something that he’d got to do himself.

I cried too for Phil, knowing that his pain was as severe as mine and I could not ease it either. We never had “good” and “bad” days at the same time - I’d be crying when he was having a “good day” and vice versa. There were days when I felt I’d got no more to give, struggling just to get out of bed every morning. It takes time to readjust, learn to live alongside each other, recognise each other’s needs and reactions. All I wanted was my son back, and my life back how it was. CRY put me in touch with bereavement supporter Caroline Gard. Being able to speak to someone who had experienced the same loss as myself, who knew exactly what I was going through, with whom I could share my innermost feelings and fears gave me the strength to support Phil and Josh. I have now trained as a bereavement supporter to help other mums cope, as I was helped.

Initially, spending time with my parents was difficult. Dad was 86 and cried whenever Nathan’s name was mentioned, saying it should have been him. I didn’t feel able to cry with Mum, who was 80, because when I cried, she cried and I didn’t like that. Eventually we were able to spend more time talking about Nathan without crying. We were a close cheerful family before Nathan’s death, enjoying weekends and holidays together. Quite happy with our lot. I used to tell the boys if they had a problem, as long as we all ended up safely tucked up in our beds at night then nothing else really mattered. Losing Nathan reinforced this and my nephews and nieces have been cherished even more than before because we now realise that life’s short and every minute should be treasured.

It was difficult though at special times like birthdays and celebrations because Nathan was not there. At first everyone felt guilty celebrating whilst we were in despair but he is constantly remembered and talked about. The same applied to our amazing friends.

We’re actively involved with their family lives, and I know they used to, probably still sometimes do, feel guilty telling us of their children’s achievements, but I would prefer to stay fully in touch with them all. Even though it can be upsetting I accept it as “par for the course”.

Nathan had some fabulous experiences in his short life, including representing the county in a cricket tournament in Barbados, our last family holiday together. He’d spent many happy hours with his friends and cousins laughing and having fun. His 2 passions were sport and music and we were delighted with the college award he received for “pupil of the term for outstanding contribution and achievement”. He was a strong willed, special young man with the world at his feet, who would have taken it by storm and achieved his dreams. His motto was “Live every day as if it’s your last – as one day it will be”.

Nathan was a talented, intelligent witty young man and I was proud to be his mum. He did more in his “almost 17” years than most do in 70. I’m glad I was the mum who had the pleasure of living it all alongside him, but devastated that I’m the mum that had to lose her wonderful son. I accept that Nathan is gone from my life but he lives on in my heart and my mind. Whilst I still cry, I smile at the reminders of his funny personality that made me laugh then, and still make me laugh now. Love you always Nath xxx © Cardiac Risk in the Young 9

Matthew’s Story by Sue Dewhirst On 19th July 2012 I’d just finished shopping when I received a call from the college sister at Matthew’s school asking me to get there as he had had ‘one of his turns’. I was more annoyed than concerned as these ‘turns’ had been frequent over the past 9 years and dismissed every time by the emergency doctors as stress, migraine and dehydration. The doctors had always told him he must ‘drink more’, which is what I told the sister that day. She asked me to come as soon as possible, so I immediately called my husband Chris as he was nearer. I arrived to see an ambulance, police car and helicopter on the school rugby field, with my husband kneeling next to Matthew who was on a ventilator.

The school sister met me, saying the doctors were doing all they could. I knelt by my husband, and looking into Matthew’s eyes saw his spark had gone and that he wasn’t coming back. I went to shut his eyes but the doctors urged me not to as they wanted to keep trying CPR. They tried, it seemed, for an eternity. But he had died. I remember Chris looking up at me, sobbing, ‘he’s gone, what are we going to do?’ I just felt numb, too shocked to cry, wanting only to stay with Matthew. He was still warm. I know I fainted.

I stroked his head and held his hand as we waited in the ambulance for police statements to be completed and the funeral directors to take him to the mortuary. After, all night long we shook with cold and shock. The following morning we told other family members. My mother has dementia and I was unsure whether she would understand me but, even to this day, it is the only thing in her recent life that she remembers. Chris’ mother, 92, lived in a nursing home and sobbed how wicked life was to take his life and not hers. Everyone was disbelieving. How could this fit, healthy 17 year old suddenly die? Time dragged on.

Matthew had died during the holiday period and authorities were unhelpful, including the police, who initially suspected Matthew of being a drug abuser due to his size and muscle strength. But welcome help came 2 days after his death, when the assistant coroner suggested we contact Cardiac Risk in the Young. Suddenly a whole new world opened up to us, and we found that our concerns of the past 9 years were not the fantasies of over-protective parents of a single child born as the result of I.V.F. During the week’s wait for Matthew’s body to be released for the funeral, we did anything rather than stay at home waiting for the phone to ring. I was fixated with Matthew’s Facebook page, reading all the tributes that were pouring in about him. We’d visit the field where he died, sitting on the benches overlooking the rugby pitch – the powerful smell of lilies left there by his friends hanging heavily in the summer air.

We wanted Matthew’s funeral to be a definite tribute to his life. We were lucky that, since he was 8, he had been a part of the Ellesmere College family so asked the college chaplain if we could have his funeral there. They agreed immediately and offered to arrange everything for us but we knew what we wanted and chose the readings and hymns ourselves. Matthew had been a great musician and we wanted music to be played that he had arranged. His close friend Luke read his father Richard’s poem written the day he learnt of Matthew’s death, and Chris wanted to read a eulogy to his son. I turned up feeling robbed.

We didn’t attend the inquest. We now knew he had died of sudden arrythmic death syndrome (SADS) and felt grievously let down by the NHS doctors who had had so many opportunities over the years not only to refer him for further investigations but were also ignorant of SADS. My GP called to say how tragic this all was, reinforcing there wasn’t 10 © Cardiac Risk in the Young

anything anyone could have done. She got both barrels that day! I immediately took her CRY information and the message they were getting through to the coroners. Why didn’t she know about this already? Why had the doctors not been more curious about what was wrong with Matthew?

I still blame myself for telling Matthew to drink more but the ongoing reassurances of doctors and nurses that ‘you only have to look at him to see there’s nothing wrong with his heart’ constantly reconfirmed to me that, whatever it was, it was nothing serious. It is clear that their visual impression of his fitness catastrophically inhibited any chance he had of further medical investigation of his repeated symptoms. After the inquest I was relieved to learn that the toxicology report showed Matthew was clean. His determination to progress with rugby and weightlifting precluded abusing his body with drugs or alcohol – although he did once try a sneaky fag but was put off when he choked!

I found I needed desperately to have something to focus on and so contacted CRY. I’ve always been an organiser and I wasn’t going to submit to anti-depressants or tears. I was going to focus on getting what had happened to Matthew out there. I had to be strong and assumed I could be wonder woman. What a joke!! The truth was that I was desperately lonely without him and needed to do something that regularly brought him into my life.

Actively doing things in his memory has helped – to a point. Matthew’s bedroom is still exactly as he left it that Thursday morning. The bed unchanged, his favourite guitar is on its stand beside it, the can of Coke unopened, the 2012 Sale Sharks calendar on the wall and his team photographs for football, cricket and rugby filling the walls.

In spite of taking a month off work I found it hard to return. Lack of sleep didn’t help my inclination to be short-tempered with clients. I resisted asking for help but gradually realised that I was grieving and help was what I needed. I had to go back to that same GP that I had blasted for not knowing about young sudden cardiac death. She has become one of my closest confidants and I look forward to our monthly meetings to discuss life and what fundraising schemes I’m dreaming up next.

I’m very lucky to have had a strong marriage with Chris. We’d been through a lot to have Matthew and have had a lot more to go through since. We recognise we always will have now. We had been workaholics before and during Matthew’s life, and this was something I now bitterly regretted. Since his death it is what has changed the most. We are now doing things together again and have recently taken up golf. Matthew’s death also brought me closer to my sister. Previously we only met infrequently but she visited immediately and now I regularly travel to stay with her and we have just enjoyed our first holiday abroad together which was a great laugh.

I was too busy with work to make time for real friendships, but now do so. My friends have been amazing, although some fell by the wayside after Matthew died unable to cope with his death, or me wanting to raise awareness of CRY. Matthew’s guitar teacher said something that has stayed with me; ‘he achieved what he’d been put here to do’. I’m not a religious person, but this made sense. His death has made me sit up and take note of other people’s needs, not to put work ahead of everything else, I’ve made new friends through working to support CRY and above all else I still think of myself as Matthew’s Mum. Matthew was my only child. We shared a love of sport, music, a good laugh and Malteasers. He was a gentle giant with a great sense of humour. We had fun together always, and I treasure the memories of the time we had. © Cardiac Risk in the Young 11

Philip’s Story by Sue Fisher Phil died on June 28th 2012. How could I know that he was taking his last breath as I was happily speaking to his uncle Michael on the phone at 7.00pm? Tea was poured, the tablets taken, the 10.00pm news just started, and then the ringing of the phone. It was a police lady who said Kate Standing wanted to talk to me.

How can so many scenarios run through your mind in an instant, all in the process of problem solving, and yet never hinting at the tragedy about to unfold? Phil’s wife Kate said they could not resuscitate Phil. We said we would come…

The silence, the receiver replaced and my repeated question to Keith (Phil’s stepfather) “is that what Kate said?” I called Mark (my son–in–law) in Brisbane ensuring he was with Ruth, my daughter, Phil’s big sister. I yearned for his support and understanding, and then… the scream, the heartache in Ruth’s voice, her life shattered – again. At the funeral Ruth said “we have lost a shining light, and my world will never be the same.”

The police car drove us from Phil’s home to Paddington hospital. Kate heartbroken.

Roadworks seemed to be everywhere. Recollecting a similar journey 20 years earlier, stuck in traffic as Paul (my husband, Ruth and Phil’s father) and I tried to comprehend “terminal”. This news revived the desolation of that day. Phil had been playing cricket, felt unwell, sat down and fell to the floor. It was 7.00pm! No-one could revive him. No good bye, no long life, just no more. A numbness ensued, fitful sleep, jumbled visions, and the daily routine for Phil’s twin sons of 20 months, Ben and Oliver. No signs for them of the sadness to come. But for me, the pain is like an arrow to my soul.

The lead up to the funeral felt unreal. We spent the next few days living in the warm bubble of our conservatory, friends coming and going, tears falling, phone calls linking us to reality and the next steps. Sometimes a memory re-awakened old joys, only to be shattered as I realised there was no more. Initially no known cause, Phil was fit but dead! Then pathologist Dr Mary Sheppard learnt that he had died of familial hypercholesterolemia and there would be genetic implications. I was put in touch with CRY, just a simple phone call and yet the key to unlocking my distress. The calmness, the sincerity, the warmth of the voice at the other end of the phone enveloped me as I became a shivering mess.

Kate involved us all in funeral preparations. Hundreds came to celebrate my son’s life.

I did not cry and was thankful that our friend Colin, who led the service, did not encase his address in religious jargon. He used the word “random” which comforted me. Phil had done nothing wrong, had lived a good life, looked after his body but at this stage the medical issues were random. A few days later after the funeral came the cremation. It was just Kate, Kate’s mum and dad, Keith and I. It was solemn. It was final. Ruth went instead with her family to a lovely lake and found solace in the beauty and watched the ripples travel far and wide.

Friends hosted a family gathering to support and enjoy Ruth’s family, but all too soon it was time to take them to the airport for their long journey home. For the first time Australia seemed a long way away and no longer an adventure. I felt alone. Fortunately I have had several trips to Ruth’s home since. They have been filled with tears, laughter, hugs and joy. I am really thankful for e-mail, Skype and the post. Ruth and I have repeatedly been able to share the despair, memories and the laughter. There was no return to normal and there is still no normal in my life. Kate, Oliver and Ben bring great happiness which 12 © Cardiac Risk in the Young

softened the initial adjustments of helping face the oncoming days, weeks and now years without Phil.

I paid little attention to the inquest which proved just another formal hurdle, and have CRY to thank that we did not have to wait long. Initially I was nervous but the considerate coroner suggested we halted proceedings at any time, if necessary – and looked sternly at 2 young men who arrived and were apparently from the press. After, composing ourselves privately before leaving, we were thrown by what happened next. Stepping outside onto the pavement photographers cameras flashed, people jostled us and reporters requested details. We were perhaps too shocked to be indignant. Over coffee later we laughed it off but I was perplexed by a friend’s text the next day commenting on my picture in the newspaper!! I was initially disturbed and bewildered by the amount of media coverage. On reflection, in spite of inaccuracies, I was proud that Phil’s story became public for a day, appreciating that the readers knew my young son lived well but had tragically died.

Keith and I promised on our wedding day to support each other in “sunshine and shadows” little knowing how dark they might be! He has never questioned my emotions, just listened, accepting me for what I am; have become. He commented that for years he had lived with the ghost of Paul and now Phil’s ghost had joined us too. Life is different from what we planned but together we are muddling through, dealing with difficulties as they happen. We value our family life, sharing the pleasures and anguish of our children and grandchildren.

I cannot begin to contemplate the trauma that Paul would have experienced had he lived. Meeting a colleague of Phil’s soon after he died I became grief stricken recalling promising Paul I would look after our children. With Phil’s death I felt I had failed. Kate, Phil’s wife has been a pillar of strength, I feel sure Phil’s energy resides in her. Her moments of despair are very private, her loss and grief is immense. Her love of Oliver and Ben enables her to reach the end of each day. She has the most warming smile and a genuine love of life. Phil was her world. He was the one person who would help her through the difficulties of life, share the mediocrities, and celebrate the immense joy. He was her best friend, her lover, her soul mate, the father of their most amazing little boys.

The boys bring laughter and tears. On the one hand watching them grow up is a delight.

But sometimes hugging them, feeling their touch, looking into their eyes, I see Phil and I feel distraught knowing that this should be his pleasure, his joy, his role. It brings to mind Phil’s statement that all he wanted to be as a father, was to be there for them in their teenage years, to be the father he did not have. I feel honoured to be involved, not just as mother-in-law and granny but as a friend, and part of the family.

I cherish the many tributes to my son – his lifelong friends knew him well! “...quick to smile, joke, laugh – whether you knew him as a responsible career man, skilful and passionate footballer, teenage heart throb, or loyal, gentle, kind husband, dad, son, brother or friend... you will have lost the best you knew.”

I will remember Phil as when I last saw him happy, sparkling on Father’s Day. The warmth of the hug he gave me will remain forever. He played with his sons, eyes twinkling. I continue to see his smile reflected in their eyes. He looked at Kate with that deep connection of a loving man to his wife.

It was a good day. © Cardiac Risk in the Young 13

Shamil’s Story by Farah Hamid My husband Shafiq and I were happily living as expatriates in Kuwait until November 2010, when our lives were shattered and turned inside out and upside down. Our sons Shamil, 22, and Omer, 18, were at university in England and soon returning for the Christmas holidays. However on the evening of December 1st I became very unsettled about Shamil, unsuccessfully trying to call and text him. A friend of the boys checked Shamil’s Facebook confirming a message was posted from him the day before. He checked Shamil’s Facebook again the next morning but couldn’t tell me of the messages posted the following day from his university friends saying RIP, as he was in shock. I was in my class at school when I got the first phone call – sensing something was wrong but not knowing what it was. Feeling as if I had been kicked in the stomach.

When Shamil’s best friend in Canada called saying no-one knew where he was I returned home and for the next 3 hours Shafiq and I started ringing the university, friends, hospitals and Omer. Then my headteacher phoned, saying that she had spoken to the Buckingham coroner and that Shamil was in Stoke Mandeville Hospital and had died. It was the moment I stopped living. We learnt he left his exam hall early, returning to his room feeling unwell. Unable the following day to get a response, his friends asked the university to open his door. They found he had passed on in his sleep.

We returned immediately to England and holding Omer in my arms I felt his deep sorrow of losing his big brother and the shock of Omer, having had to identify him. I would have given my life to protect my boys, but hadn’t been able to do anything for Shamil and couldn’t take away Omer’s pain. In the days preceeding the funeral Omer couldn’t face seeing Shamil again, needing to remember his loud vibrant brother as he had been in life. The horror of seeing my darling son lying covered with a velvet sheet in the hospital will haunt me for the rest of my life. I kissed him. He was so cold. Not there.

The reality of what had happened to my child shook my very soul. I wanted to spend the rest of my life with him in that room; wanting to run away at the same time. I remember checking on Omer every hour for the rest of that day, and sitting there in a vacuum with a terrible all-encompassing pain running through my heart and soul. After his burial, Shafiq took over from my sister and brother-in-law who had been dealing with the coroner. Tests had proved negative so we were allowed to bury Shamil the next day.

My first thought on the morning of the funeral – one reflected on all our faces – was “I don’t want to live through this day”. Family, and Shamil’s friends, numb with disbelief, arrived for the funeral. My brain was unable to process that I was seeing my beloved son lying in a coffin. Even now, 4 years on, I can’t revisit that time. As a parent the most unnatural thing you can do is bury your child with every instinct screaming it should be you not them. It was on the way to Milton Keynes cemetery that I started regretting not burying him closer to our home in London. As beautiful as Shamil’s resting place is I hate him being so far away.

The sun came out as Shamil was laid to rest making the cold, grey snowy morning look beautiful. Everything sparkled and, possibly because I so desperately needed a sign, there was a voice in my head saying “don’t worry, this is what Shamil will be living in”.

The pain and reality of what we were there to do was ripping my heart apart. After the funeral I was engulfed by the bitterest emptiness, remembering little of the rest of the day.

Omer was desperate to return to Kuwait, needing to be where he had lived with Shamil.

14 © Cardiac Risk in the Young

Desperate as I was to go I found it so hard to leave Shamil behind; but Omer’s needs came first. His vacant, hurt expression told me he craved his childhood home.

We were then plunged into a frenzy of condolence visits, operating like zombies, whilst desperately trying to find answers about what had happened to our son – only having a vague idea that it could have been an infection in his heart. My sister was told about CRY and Shafiq set up a call with Alison Cox. That call changed everything for us. Now we had a name of a possible syndrome, SADS, and Alison advised us to contact our coroner for Shamil’s heart to be sent to CRY’s expert pathologist Dr Mary Sheppard.

Instead of relief I felt more confused, as I could not process how young, healthy, fit people just suddenly died. It made no sense. I don’t think it ever will. I was grateful our coroner let us ask questions before he closed the inquest. Mine was whether Shamil would have suffered and the Milton Keynes pathologist who did Shamil’s post mortem confirmed she didn’t think he would have even woken from his sleep. That is something I will always be so grateful for. As a family we decided to support CRY who have been our lifeline.

Losing Shamil has changed everything in my life and I feel that I don’t totally belong in this world anymore. I hover between wanting to be with Shamil and Omer, stuck between death and life, not fitting in either place, not being able to take anything for granted again.

I have a different outlook, different priorities. I left my job as a teacher and hope to find something to fill the vacuum but have difficulty planning ahead and motivating myself.

I obsessively check on Omer all the time. He is so patient understanding my fear, but it can’t be easy for a 23 year old.

Shafiq and I made a pact to try and be as honest as we can with each other. This is not always possible but we find it has helped us to negotiate this journey together. We are united in our need to ensure Omer lives as full and normal a life as possible. We love to see him happy and embracing life and it is the only thing that matters anymore. Omer deeply misses his brother. I knew my boys loved each other but hadn’t realised how much Omer relied on his big brother and how many life lessons he learned from him. He lost that security of someone, apart from his parents, who would always look out for him.

However I love how he remembers the positive reinforcements from his brother about how he should deal with things.

Relationships have changed too. Both Shafiq and I are blessed with supportive families and friends, but a few relationships have become strained. We find some people can talk naturally about Shamil and allow us to grieve and be ourselves. They realise we have changed and can accept us for who we are now. Others seem to prioritise their own feelings, finding my grief awkward and taking it personally. I have found meeting their expectations hard, and their belief I can reduce their suffering to be unmanageable.

These people remind me how different I am and how they are unable to accept it. They want us to return to how we were before. More predictable. Happier. They impose their wishes to do things because it makes them feel they are ‘curing’ us. I can only cope with them by distancing myself.

Shamil was a larger than life character with an incredible zest for living. He filled his short time with laughter. He was a wonderful loving son, brother and loyal friend. He instinctively knew and valued what was important. He taught me so much and continues to do so but not knowing where and how he is, kills me on a daily basis. However, I do believe that he is safe and in a loving place.

My need to still keep him connected to this world drives my need to do things in his memory. Saying I miss him doesn’t come close to describing how I feel about his loss in our lives. © Cardiac Risk in the Young 15

Jenny and Adam’s Story by Jane Lambert In 1992, my life changed forever when a policewoman knocked on the door of our holiday cottage. She told me that Jenny, our 17 year old daughter, had died in her sleep.

The shock and disbelief at this news is impossible to describe. I felt as if a cannon ball had shot through me and only the frayed, charred edges remained. I find it hard to express the pain and horror that losing my child brought. The love so unique and all-embracing that even the greatest poets fail to encapsulate.

And then the dreadful task of subsequently telling her devoted younger brother Adam, 2 grandmothers, the extended family, and her young friends. Rippling out, so many affected. We had been thrown into an alien, unwelcome world.

Then there was the horror of seeing her body in the mortuary and awaiting the postmortem. Our informative and sensitive coroner learnt the cause of death was possibly myocarditis – although old scarring on her heart was a puzzle. ‘Adult cot death’ was mentioned. What was that? How absurd! I was a nurse after all.

My husband organised the funeral, whilst I watched from the sidelines. Friends, school and ballet teachers contributed. I was so pleased with the booklet produced for those attending and shall never forget the heaving church and wonderful tributes for Jenny.

What footprints she had left in such a short life. I will never be able to thank those who helped us through that day.

So we returned to our lives, in our empty, silent house. The dynamics of our family now out of alignment. Adam spent his days with supportive friends, forging a bond unbroken until his death in 2011. We returned to work. I somehow qualified as a midwife motivated

by Jenny’s pride in me but found the smallest of tasks had to be relearned. Even buying food proved an ordeal. I found myself unable to listen to music and even today switch off the radio if ballet music is played. My concern for Adam’s welfare was all consuming and I constantly worried about his health. I read endless books and poetry on death and dying, listened to tapes – seeking answers. My faith comforted me but the impact of our grief caused irreparable damage to our marriage and we parted some years later.

With Adam at university, my emotionally and physically demanding work provided the foundation I desperately needed. Monthly group support meetings proved pivotal. Life became more manageable. I enjoyed the newness of amateur dramatic societies, meeting different people but remaining close to old friends. Singing lessons followed. I joined operatic societies and classical singing became important.

Adam moved in with friends, beginning a relationship with a wonderful girl who became the love of his life. Watching their happiness blossom gave me great pleasure. I remarried, and Adam and I, both diagnosed with cancer the same week, confronted and overcame it.

Truly a most challenging time. Adam’s forthcoming wedding plans were eagerly shared.

My life had seemed to become a series of snakes and ladders, struggling with each rung, endeavouring daily to climb a little higher, but falling prey to the snakes, and sliding back down. As time progressed I gained confidence, encountering less snakes.

But then, most unbelievably, my greatest fear was realised. Adam died. I had lost both of 16 © Cardiac Risk in the Young

my children. It is difficult to express the horror following the phone call from his fiancée at 3 am. Dashing to the hospital, being shown to a room, knowing what would follow.

Resuscitation had proved unsuccessful. Like Jenny he had died in his sleep. Everything was now lost in a split second. It had happened again. Adam was 34. His fiancée was inconsolable.

The following days, waiting for the post-mortem result, seem blurred now. The shock was unbelievable and to function was almost impossible. The exhaustion and devastation continued day after day and an ocean of tears were shed. The house was filled with Adam’s friends and the girls cooked in the kitchen for us all. I had always enjoyed entertaining, declining offers of help. But now the house seemed purposeless. Hopeful times lost forever. What would become of our lives? Helped by the remarkable kindness that surrounded us, we tried to make sense of it all. The coroner reopened Jenny’s notes for further investigation by CRY’s Professor of Cardiac Pathology Dr Mary Sheppard. She confirmed that Adam’s death (Jenny’s too) was caused by arrythmogenic right ventricular cardiomyopathy (ARVC).

For his funeral we used the same church as for Jenny. Again, I felt proud at the wonderful tributes from friends and colleagues. I asked my best friend how I would survive this time and she responded “like you always have done” which was something I remembered time and again during the following months, and strove to achieve. Adam was buried with Jenny. My beautiful children were together.

Where had this inherited disease come from? I talked at length to Alison Cox whose calm informative persona helped to clarify so many grey areas. I had no knowledge of CRY so was grateful to have the opportunity to ask the many questions to which I so desperately searched for answers. As parents we were then screened at CRY’s Centre for Inherited Cardiac Conditions at St. George’s Hospital but results were inconclusive. I felt guilty at being healthy whilst my children had been so cruelly affected.

A weekly telephone call with a CRY bereavement supporter was hugely helpful, I cannot praise her enough. However on returning to work as a practice nurse, I found my kind colleagues were horrified by my altered situation. I wanted to be treated as normally as possible but my dynamics had changed whilst theirs had not. Before, we would talk of our children and the events of their lives. I worried how they would now relate to me and did not want to be seen as different from them. I worked hard to somehow fit into the mainstream of life again acutely aware that it was ultimately only me that could do this. I discussed at length with the doctors the potential of cardiac risk in young people, and referred any worrying symptoms that patients presented with to them for further assessment, which sometimes resulted in cardiac referrals.

Since moving to Wales, and largely due to the help and encouragement of my husband, and both my own and the children’s friends, I continue to build daily on those first tentative steps. We share anniversaries as well as doing fundraising events for CRY in memory of both of my children. I know I am extremely lucky to have so many concerned for my welfare.

Jenny and Adam were my very best friends. Happy, kind, considerate young people with a love of life and generosity of spirit, they cared for others and were respectful and loyal to their family.

They were the greatest blessings of my life. I am so grateful that I am their Mother. © Cardiac Risk in the Young 17

Andrew’s Story by Ruth Lowe Andrew was my only child. My world. On 12th April 2004 he suddenly died. My husband Dave and I were away. I’d telephoned him but didn’t recognise the voice telling me that Andrew wasn’t there. I was told it was Preston CID and advised to ring my sister.

I began to shake. When Dave rang her she said that Andrew had died whilst out with his friends the previous evening. I remember screaming – for how long? I’m not sure.

We contacted his fiancée Gemma in Australia and drove the 3 hour journey home in silence trying to make sense of what had happened. Should I have noticed something was wrong? When he complained of indigestion should I have taken him to the doctor?

Had someone caused his death? My feelings were indescribable: disbelief coupled with guilt at not being there and protecting him, as a mother should. Most of all I needed to see Andrew. In the morgue he was behind glass and I wasn’t allowed to hug him, tell him I was there, and that everything was going to be all right. It was hard to leave him in that cold dark place. The police and coroner’s officer were sympathetic, supportive and kept us informed. The post mortem revealed that Andrew had suffered 2 heart attacks shortly before he died and that his left ventricle was enlarged. Toxicology reports were clear and he was described as having been a healthy young man. So what had caused his heart attacks and for his heart to go into arrhythmia?

I somehow functioned for the next 5 days but can’t remember eating. Anxious that the press didn’t sensationalise the story we kept them informed, constantly contacting the coroner’s officer to find out more about that fatal night. Details became very important.

Gemma returned and together we planned the funeral – the last thing I could do for my son. Perhaps because he didn’t belong there, I never thought of visiting Andrew in the funeral parlour. The day before his funeral we brought Andrew home. His friends came to say goodbye that evening but I didn’t see him until the next morning. It was hard to bear.

He was so still. Looked so beautiful. As I realised it was time to say ‘goodbye’ and that I wouldn’t see him again I became overwhelmed by grief.

The first hymn was chosen by Gemma and had been selected for their wedding. I felt great pride at the tributes paid to my son who was laid to rest close to his ‘granddaddy’. I did not bury him with his father, who had died when he was 3, because I wanted him near home and where eventually I could be buried with him. Following Andrew into church, carried by 12 ‘mates’ I reflected how 2 years previously he had walked me down the aisle to ‘give me away’ to Dave.

The house was quiet after the funeral. No trainers by the stairs, dirty clothes on his bedroom floor, dirty pots in the sink, and cheery greetings when he returned home. I missed, still do, being a mum. People stopped calling and life carried on around us. I wanted to turn the clock back and change the ending to this living nightmare. I dared not look into the future – there was nothing there. Each day came and went. Was it a week since Andrew died? Two? A month? Time was distorted. We got up, went out, went to bed and were glad that another day was over. I was exhausted, tired of feeling totally consumed with sadness. From the first moment, I knew that Andrew’s death was different from any other bereavement I had experienced before. Deeper. Life changing. My heart had been ripped out of my chest and shattered.

I was a mother without a child. It hurt there was no one to call me Mum again. I had lost my identity and couldn’t laugh or feel excitement. I was a teacher, but resigned.

18 © Cardiac Risk in the Young

I couldn’t sing or dance. Eventually, after a year or more I began emerging from my chrysalis of sorrow. One day I began to sing. Healing had begun. Slowly. 1 step forward and 2 back. Initially I was intent on finding out what had caused Andrew’s heart attacks, spending hours on the Internet. I was disappointed that the inquest provided no answers.

Accepting we would never know was challenging but I became at peace that everything had been done.

Because my outward appearance concealed my inner feelings, others did not understand and I found it pointless explaining how I really felt. Some friends, particularly work colleagues, were obviously uncomfortable in my company, avoiding further contact, which hurt. Even now, when I mention Andrew, some change the subject, which saddens me. Just because Andrew is no longer with us doesn’t mean he didn’t exist. When friends discuss the achievements of their children and grandchildren I can feel excluded.

Andrew had been very close to my mother and each time we met she was distraught.

I found it difficult to be with her when she was upset. Our grief impacted on each other and supporting her was difficult. My support came from my husband, Chris – a female colleague from work, and 2 mothers whose daughters had been friends of Andrew, who have since become special friends. They took me out weekly. I talked and cried, freely voicing my feelings. They understood that I love to talk about Andrew and listened patiently to my ramblings understanding the terrible pain they could only attempt to imagine. They didn’t ‘try to make me better’ – they simply ‘walked with me’. Many of Andrew’s friends are still in touch and hearing their stories about him warms my heart and brings a smile.

Having no children of his own, Dave had lost the ‘son’ he never thought he would have.

Even though he was dealing with his own grief, he was my rock, taking time off work and by my side at all times. He dealt with the coroner, supported me at the funeral, helped with the practical things that had to be done, handled the many phone calls, took me out every day and protected me. I felt protective towards Gemma knowing Andrew would want her to be looked after. She was the nearest thing I had left of him and when later she moved closer to her parents, it was another painful goodbye. I was delighted when we were invited to her wedding, and have remained in contact, occasionally meeting up.

The intensity of the sadness I feel at Andrew’s loss is the same as the love I felt for him when I first held him in my arms. Just as this love will never leave me, neither will the feelings of loss, which is now part of who I am. There is an Andrew shaped hole in my heart that will never be filled. The loss remains the same but life has got ‘bigger’.

It still cuts deep when asked if we have any children. I explain that I had a son who unfortunately died when he was 21. Sometimes this answer leads to an awkward silence but sometimes to a welcome conversation about Andrew. I prefer the latter. Memories of him now only occasionally hurt and induce tears, and photos of him make me smile. I see him wherever I go. As I see his friends’ lives move on and they become husbands, wives, fathers and mothers, Andrew will always remain 21 years old. Life has changed, but my work with CRY helps me positively channel my grief.

Andrew was a sociable person and made people laugh (not always intentionally!), but shy and sensitive too. He related to both young and old, bringing joy to many people’s lives. He made his friends and family feel special and would do anything for anyone.

I hope I was a good mother to him and cling to his last written words ‘love you mum’ in his Mother’s Day card. I reply in my heart everyday ‘... and I love you Andrew’. © Cardiac Risk in the Young 19

Richard’s Story by Nicola Merriman We had all just been on a boat trip to celebrate Richard’s 27th birthday, lots of laughter and jokes. But then, 2 days later on the 25th July 2012, he suddenly died. That morning, grabbing a piece of his birthday cake, he called out, ‘love you,’ as he tore off to work as normal. No time for a hug or goodbye. That evening he went off to Lincolnshire to the house he had just bought. It was around 10pm, I was having a shower when my husband Paul banged on the door, telling me to come as Richard had been taken to hospital. My legs went to jelly. I had a bad feeling that this wasn’t good. And I was right. Richard had been playing football with a friend’s child in the nearby park and collapsed. A stranger with first aid knowledge tried to save him with CPR until the ambulance arrived and rushed Richard to Boston Hospital.

Meanwhile Paul and I were on our nightmare journey up to Lincolnshire from Hertfordshire.

It was a living hell. The motorway was shut and I felt increasingly sick with terror fearing the worst. On arriving at the hospital and learning that he had died, I collapsed. We were led to a private side room where Richard lay looking so peaceful. I stroked his head and kissed him, hoping he would wake up, and held his hand but he just stayed there, so still and quiet. I didn’t cry or scream. I just felt incredibly numb. My husband kept muttering ‘unbelievable.’ We were in total shock – how could our fit, fun-loving son be dead? It was heart-breaking when Paul phoned my son Kevin and daughter Rebecca to tell them.

They were so far away and I wasn’t with them when they most needed me. They decided not to come up to see their brother, because they wanted to remember him happy, in familiar surroundings.

We didn’t sleep that night and in the morning reality hit us. Paul had the dreadful task of telling family and friends that Richard had died, and our lives had been changed forever.

I found myself just wanting to keep hearing Richard’s name, and saying it myself. It was a subconscious reflex to not being able to see him, touch him any more. I was so deeply immersed in my grief that I did not realise until later that I overlooked the suffering of Kevin and Rebecca who were grieving their brother, as well as my husband who was coping with losing the son we had loved for 27 years. I was not properly alert to the needs of my family at this dreadful time and I am not sure I can ever forgive myself.

Then things became even more shocking, out of perspective and abnormal when the coroner told us there had to be a post mortem. Richard was a healthy young man and they needed to know why he died. The agony of losing our son was bad enough, but then to be told his heart had to be taken away for investigation was horrible and surreal. The post mortem identified arrhythmogenic right ventricular cardiomyopathy (ARVC). It was 5 very hard weeks before we could have Richard’s funeral. He had never talked about his funeral send off. Why would he, being so young? So we didn’t know what he would have wanted. Eventually Paul, Kevin and Rebecca decided that we should do something that we thought he would have liked and collected flowers from my garden to put over his coffin. He loved flowers, and enjoyed looking forward to the prospect of having his own.

It had mattered to me that I looked good to say goodbye to Richard, and so I exchanged an outfit I had recently bought for a special happy family occasion to something more suitable for his funeral. On the day the hearse arrived outside our house for the funeral, it felt as though it was someone else, not our Richard. I ran outside and threw myself at it, feeling a terrible yearning to get him out. It was amazing how many came. The crematorium chapel was full upstairs and downstairs. It was all a blur; I couldn’t speak 20 © Cardiac Risk in the Young

and was shaking throughout. Richard’s best friend Chris did a wonderful reading. We had my favourite hymns, ‘Morning Has Broken’ and ‘All Things Bright and Beautiful’ because that’s what Richard was. We played ‘Scar Tissue’ from his favourite band Red Hot Chilli Peppers, a song that meant a lot to Richard. The vicar was a friend and neighbour who had watched Richard grow up. Although retired he said he was honoured to be asked to send him off for us. It made the funeral more personal, although it was so hard for him to make his own farewells as well as conducting the service. Both after the funeral and later, Richard’s friends told me wonderful stories. Some funny, some naughty, but all of them good – I loved hearing things I didn’t know about my son.

Since losing Richard the love and grief I feel for him has become much more powerful and dominated my life. I know at times I pushed every one away, and in the weariness and weight of my grief have felt sometimes that I didn’t want to be here. It must have seemed I had no love for anyone else but I think subconsciously I didn’t want be too close to those I loved because I was afraid of losing them as well. Paul has been my rock, despite his own trauma. He coped by throwing himself back into work, but showed his strength and love for us all by always being there when we needed him. My own love for him and Kevin and Rebecca has always been there, but I am only just starting to be able to show it again. There have been many others who helped us through this appalling experience including family, friends, and work colleagues. My niece Ruby, was and is amazing. Kevin’s girlfriend Emily has massively supported him and us, as well as grieving herself. I know I wouldn’t have got through without them all.

2 years on, looking back, I realise that I was in a big protective bubble after Richard died.

Weirdly the suffering has made me a stronger person. This terrible ordeal made me want to do positive things to keep him alive in our hearts by saving other young people and preventing another family going through the same heartache. I started fundraising for CRY in Richard’s memory, so that I could get young people screened in our local area, also raising awareness in our local paper with the support of our MP. I subsequently had terrible depression and anxiety attacks the second year after his death, because I kept myself too busy and did not give myself time to properly grieve.

I felt guilty at neglecting the needs of Kevin and Rebecca. Kevin became angry and Rebecca, who greatly missed the big brother she was so close to, also suffered depression. My husband does not say much because he finds putting his feelings into words too difficult, but I am now getting on better with my life and starting to look after myself. I go to dance classes, walk a lot, and don’t keep everything bottled in. I write to Richard in my diary most days, telling him what we are up to which helps me feel close to him. I miss him every day and always will. I say to everyone reading my story, don’t give up. I wanted to, but managed to keep on going and got stronger. We as a family still find it hard to talk about the bad times, but we know things will get a lot easier. Richard was a very funny character who made us all laugh with his amusing antics. He loved to embarrass me and I used to tell him off when he was little (even as he got older) for pulling so many silly faces, especially when we were out shopping!

I would do anything now to bring all that back.

He was bright, affectionate, kind, generous and would do anything for anyone. Everyone loved and respected him. He did so much before he died and we will always have memories of the fantastic stories he told us, especially from his travels. He lived life as if there was no tomorrow, as if he knew his life was soon ending.

Richard, we will always remember your gift of making us laugh.

I will always love you. Mum. xxxxx. © Cardiac Risk in the Young 21

Gary’s Story by Lesley Pope July 16th 2011 was the day that changed our lives forever. Around 5.30 a.m. I was woken by my mobile phone and saw Gary’s name, wondering why he would call so early whilst on holiday in Portugal?

It was his girlfriend. My memory of that dreadful time is very poor but I recall standing in the middle of my bedroom, hearing this quiet voice speaking to me and the indescribable physical sensation which shook my whole body, asking; What do you mean Gary’s dead? How can he be? He is on holiday. He only recently texted me. The mix of anger; pressure that I had to sort out the mistake; knowing I had to pull myself together. My husband Roger standing in the middle of the room staring at me, barely speaking; my son Robert, in the doorway with an unforgettable look of terror on his face slowly backing away as I walked towards him; delaying telling my daughter Louise, wanting to protect her for as long as possible – and how Robert strode up and down the landing – seemingly for hours – waiting for his sister to arrive.

Gary had recently celebrated his 30th birthday a fit and healthy young man. How could someone just die suddenly in their sleep with no warning and without being unwell?

There must have been some kind of accident. So many thoughts in my head and I couldn’t make sense of any of it. I kept panicking whether Gary needed us; worrying that he was frightened. Feelings that appear so irrational now. I kept telling him, in my head, that we were coming to bring him home. I think I believed once we were in Portugal, everything would be ok, I just had to get there. So much to do and arrange yet I barely had the energy to breathe. Robert stayed with his sister Louise while we were away.

They needed to be together and have been almost inseparable since.

Our visit lasted 5 miserable days. I kept seeing Gary’s name on all the paperwork and the word deceased appeared to jump out at us. Someone handed me Gary’s passport which had been taken away the morning he died. Now it had a large piece cut off the corner.

I couldn’t take my eyes off it, held it, thinking, how can this be happening? Where is my Gary? All I wanted was to see my son. 3 long days later, when the post-mortem and legal paperwork were completed I was able to tell him we were taking him home.

Once home, a second post-mortem was done, also inconclusive, so the coroner asked our consent to send Gary’s heart to Dr Mary Sheppard and told us about CRY. I could not accept death by natural causes. There was nothing natural in my young healthy son dying in his sleep. Dr Sheppard’s report found no abnormalities. Gary’s heart looked healthy and her conclusion was that it was probably an arrhythmia. We were astounded.

I could not understand why Gary had died from something I had never heard of. There were so many questions. Our daughter contacted CRY who immediately offered their support; sent literature, and we learnt that 12 fit and healthy young people die, like Gary, in the UK every week. The nightmare escalated when we realised our other 2 children could be at risk and CRY offered us all fast track screening at St George’s Hospital. I learnt I possibly carried the Brugada gene, which was probably what killed Gary.

I felt physically and mentally exhausted and didn’t know where to begin when I realised that we now had the dreadful task of arranging our son’s funeral, something no parent expects to have to do. Looking back, we were fortunate that so many people asked to be involved in the planning of Gary’s service. It was their energy, I believe, that gave us, his family, the strength we needed to cope. We soon realised that arranging this service was going to be one of the last things we could do for our son. I remember little of that time 22 © Cardiac Risk in the Young

but do recall 3 of his friends individually began their tribute “Gary was my best friend”.

We knew Gary was special, but it was lovely to hear that others felt the same. Another of Gary’s friends owned the village pub and requested the honour of holding the wake there. Once again it was another of Gary’s friends who took the pressure and worry from us. His friends have continued to support our family and been greatly involved in our fundraising for CRY, holding many events at the same pub since.

I have never been the same person since the moment I heard the terrible words that Gary had died. I know a part of me died with him. We were in dreadful shock that morning and felt the world was collapsing around us. I knew then that our lives would never be the same again. Our old life ended that day and we started a completely different one, without Gary. It was too painful to contemplate and at times still is. I truly believe I have had the best times of my life and will spend the rest of it learning, understanding and hopefully passing on anything positive it may have taught me.

In spite of the love and support of my husband, children and extended family the feeling of loneliness was at times overwhelming that first year. Strangely I often preferred to be on my own, craving peace and quiet. Sometimes I felt I wanted to run and keep running but understand now it was the reality of all that had happened I was trying to escape from. I thank God for my husband and my children. I couldn’t imagine where I’d be now without them.

Gary’s death has changed us as a family in so many ways, Roger, like me, finds it very difficult to socialise and plan ahead. Robert is no longer the happy go lucky person he once was, saying “Not only have I lost my brother, I’ve lost my best friend”. When I’m having a bad day I am comforted by Louise’s words “Don’t worry Mum, Gary went to sleep happy, looking forward to the rest of his holiday – for him, he is still on his holiday”.

Those words have helped so much, and are what enables her to cope.

As I reflect on our time with Gary I can recall every one of his 30 years and feel privileged to have been his mum. He had a happy fulfilled life and achieved and experienced so much. As a child he enjoyed many hobbies, playing football for his local team, judo, cricket, fishing and learning several instruments. His passion for music never left him.

After graduating from university he travelled through Thailand, and lived in Australia for a year. Once home, his love of travel took him to Europe, South Africa, Egypt, The Gambia, and America to name a few. He had just purchased his first property and not long started an amazing new job in the city. All his plans and dreams seemed to have come together.

We have lived 3 years now without Gary. I no longer feel the loneliness I once did although I often still feel lost without him. I miss and think of him every day and occasionally feel him near. I worry that as my life moves on those moments may fade. I have found that I get swept along with life’s routine but mostly feel like a spectator watching everyone else.

I have learnt that life goes on. We have 2 young grandchildren now and they will grow up knowing about their Uncle Gary as he will always be a part of our family. We speak of him as though he is still with us.

I asked myself what Gary would have made of this tribute. He was one of the most modest people you could meet, and never spoke of his achievements but it’s a mum’s prerogative to be proud.

Although the quietest of my 3 children he had a great sense of humour and his family was probably the most important thing in his life. I feel sure he would want us to build it back together somehow, and we are on that journey now. I know Gary will be with us every step of the way. © Cardiac Risk in the Young 23

The Role of the Coroner following a Young 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.judicialcomplaints.gov.uk/index.htm 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.judicialcomplaints.gov.uk/index.htm 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 coordinators 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 benchbook and Practice Notes for Coroners. He was appointed OBE (June 2009) for services to the administration of justice.

Alison Cox MBE Alison Cox MBE is the Chief Executive of the charity Cardiac Risk in the Young (CRY) - the organisation she founded in 1995. In 1993 she instigated the first cardiac screening programme in the UK, working with the Lawn Tennis Association – a programme that was widened to the general public in 1997. As an experienced counsellor she developed a national bereavement support programme for young sudden cardiac death. In 2002 she started the Surgery Supporters Network (now called myheart) for young people who have been diagnosed with a lifethreatening heart condition. She has been on the board of various government advisory committees and is a well known and passionate speaker about the impact of young sudden cardiac death. In 2007 she was awarded an MBE for services to healthcare.

Professor Mary Sheppard, MB. BCH. BAO, BSc. MD. FRCPath Professor Sheppard is in charge of the CRY Cardiovascular Pathology Unit at St George’s Medical School. She is an expert cardiac pathologist and has established an international referral centre with funding from the charity CRY (Cardiac Risk in the Young) to investigate young sudden cardiac deaths. Mary works closely with the cardiologists at St George’s Hospital, as well as collaborating with clinical/scientific teams from other institutions to assist with the screening of relatives of sudden cardiac death victims. Since her appointment she has undertaken extensive research and teaching with an emphasis on sudden cardiac death and published 160 peer reviewed papers, 71 case reports, 24 book chapters, 36 reviews/letters/articles, and 9 international guidelines/government reports. In addition she has co-edited 1 book, co-authored 4 and completed the 2nd edition of her book on Cardiovascular Pathology. Professor Sheppard is President of the Pathology Section of The Royal Society of Medicine, an advisor to governmental bodies on the national cardiovascular steering group developing a database on sudden cardiac death, and on the committee developing international guidelines in training in cardiovascular pathology. She was awarded the coveted Stokes Medal by the Irish Cardiovascular Society for work in 2009; and gave the Phillip Poole Wilson memorial lecture in London in October 2014.

28 © Cardiac Risk in the Young

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 prevalence 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 offers group support for family and friends following a young sudden cardiac death in various methods; 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. Some of CRY’s volunteer Representatives have also set up their own Walk & Talk groups.

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, or if you would like to speak to the Bereavement Support Team, please contact us on 01737 363222 or email cry@c-r-y.org.uk

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

Cardiac Risk in the Young Tel: 01737 363222 www.c-r-y.org.uk