Sudden Infant Death Syndrome (SIDS) on the ‘other side’

Sudden Infant Death Syndrome (SlDS) on the "other side" A personal account and a tribute to Dominic Lewis Stead, 21.11.95-22.02.96 C. E. Stead

Carolyn E. S t e a d RGN, EN

Staff Nurse, A&E Department, Leeds General Infirmary, UK

Manuscript accepted: 29 July 1997 This article was

written while the author was undertaking the Diploma in Accident and Emergency Nursing (incorporating the ENB 199). This article was previously published in

Accident and Emergency Nursing (1998), 6:24-27

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Every week in the UK 10 babies on average die as a result of Sudden Infant Death Syndrome (SIDS), sudden unexpected death in infancy or cot death (The Foundation for the Study of Infant Deaths [FSID] 1995). I k n o w that now, the same as I k n o w that certain babies are more at risk. Boys, premature and low birthweight babies are more likely to be affected. About 80% of cot deaths h a p p e n between one and 6 months of age, with a peak at 2-3 months, and 57% happen in the winter months (FSID 1995). I was guilty on three counts: having a boy w h o was born in winter and w h o was 3 months old in February. I was also guilty on a fourth count putting m y b a b y to sleep on his front. I knew little of cot death then except that it happened to other people, not me. Of course I was aware of the Reduce the Risks literature which stated 'place your b a b y on the back to sleep'. But as I say cot death was something that happened to other people, and w h e n you are faced with a screaming baby w h o just would not settle, never mind sleep on his back w h a t do you do? Of course on reflection I should have tolerated the screaming and crying because it is preferable to what I have now, but it's too late! Just too late! We had tried a long time without success for our m u c h wanted second baby, then finally after fertility treatment at St James's Hospital, I conceived. We were absolutely delighted. My expected date of confinement was 18 N o v e m b e r 1995, bang on cue! I would have finished m y Enrolled Nurse Conversion Course which I was

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undertaking at the time which would m e a n I w o u l d be able to take time out from work to be with m y family and new baby. What could have been better? 18 N o v e m b e r came and went, then on 21 N o v e m b e r 1995, the day I qualified as an RGN, m y precious 91bs loz baby son Dominic m a d e his entrance into the world. Dominic soon became k n o w n as 'the icing on the cake', because he was. We were the 'perfect family' in everyone's eyes, ours included, until that day in February 1996 when fate intervened. It began pretty much the same as any other day, m y 6-year-old daughter, Jodie, was on a school holiday and we had decided to go shopping with m y sister-in-law w h o was in the latter stages of pregnancy herself. Looking back now, Dominic had seemed quieter than usual on that morning. I put him to sleep in his pram, on his front as usual, while we shopped. Because he was still asleep w h e n we finished shopping, I decided not to disturb him and to put him in his carrycot in the back of the car next to Jodie. On the w a y h o m e Jodie and I called in at m y sisterin-law's for a quick drink. I left Dominic in the car because he was still sleeping, on the proviso that w e would check him frequently, which we did. That particular afternoon, Jodie decided to stay with m y sister-in-law so I happily left for home, which is only 5 minutes away from m y sister-inlaw's house, with Dominic. Then the nightmare which we have yet to wake up from began. As I went to take the carrycot from the car, to m y horror I noticed that Dominic was face d o w n

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Sudden Infant Death Syndrome (SIDS) on the "other side"

not with his head to one side as he usually was but face down. No he couldn't be! Don't be silly I thought to myself, not Dominic, not m y baby! I turned him over aggressively, panicking, I gasped! I never even checked to see if he was breathing I just knew he wasn't. There are no words to describe finding your baby dead. So unexpectedly, all m y dreams, all m y plans were ripped to shreds. I felt like someone had literally put their hand into m y soul and ripped it out of me. I glanced around the estate quickly, no-one was in sight, panic, blind panic, what could I do? I began a frenzied attempt at resuscitation hoping m y nursing skills would kick into action. They didn't - I was a m u m fighting desperately to save her baby's life not an experienced A&E nurse. All the basic life support training I had ever had was hopeless. I did everything wrong, it's so different doing it for real on someone you love so much, I never want to have to repeat the experience. I ran into the road, hysterically screaming and sobbing, 'Help, help,' I yelled, no-one came. I tried resuscitation again, I ran back into the road, someone was passing by, 'I've killed m y baby,' I screamed, 'Help, get an ambulance'. Not long afterwards, two neighbours appeared, one of them lifted Dominic from the carrycot and began basic life support. 'Don't stop,' I sobbed, 'Please don't stop'. At that moment, m y m u m drew up in her car because we had arranged to spend the afternoon together. I dragged her from the car, once again yelling ' I ' v e killed Dominic, oh m u m , I've killed him'. She took one look at Dominic and replied, '! think you have'. I genuinely believed he had suffocated on his front and I needed everyone to be clear that it was m y fault and m y fault only. This reaction I n o w understand is one of the immediate responses to grief as described by Wright (1991). It doesn't make it any easier but at least I k n o w it's normal. After what seemed like forever, the ambulance appeared. The rear doors opened and out jumped one of the two-man crew. 'I've killed m y baby,' I screamed. 'What makes you think you've done that, love?' he asked, matter of factly, cooly, calmly even, no rush, no panic, no urgency. To be honest, he could have been dealing with a patient w h o had cut his finger, not an unresponsive 3month-old baby. I feel this is an important point worth emphasizing, this was m y baby and I -

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wanted urgency - not panic just some urgency to the situation, demonstrating that m y baby's life mattered to him too. He took Dominic from the arms of m y neighbour and with no further comment, except 'We're going to the local hospital's A&E department,' got into the ambulance and set off, no blue flashing lights, no sirens, no urgency. Did he k n o w something I didn't? I was abandoned, they had taken m y baby away without me, but h o w could they? He had never been left with strangers before. Why had I, his m u m , been left behind? This was a question that remained unanswered for the m a n y months to follow. My m u m and I m a d e our way to the local hospital. My neighbour was left, trying desperately to reach m y husband, John. On our arrival we were met b y an auxiliary nurse who quickly ushered us into w h a t we in our A&E department know as the visitor's room. She assured us that 'Everything possible was being done'. Wasn't that m y line? Wasn't that what I said to people? I wanted to be with m y baby, but being frightened not to p u s h it I kept m y thoughts to myself. The presence of relatives in the resuscitation r o o m is a contemporary issue which is beyond the scope of this reflection. However, in 1985, witnessed resuscitation was audited and reported that 64% of relatives felt it was beneficial to the patient and 76% felt their adjustment to the death was m a d e easier (Morgan 1997). The auxiliary nurse sat in silence, directing her eyes anywhere but at us, dreading that we would ask her a question. I k n o w because I have been in similar situations myself, feeling uneasy that I w o u l d n ' t be able to answer. If someone is not comfortable with the situation it is better that they are not there rather than being there and sitting in silence. I k n o w only too well that words are not m u c h of a comfort at that time but what about non-verbal communication? Touch and facial expression for example, demonstrating sympathy and understanding. The door opened and in came a doctor I instantly recognized. He sat opposite us and began taking some history as to what had happened. Just then John, m y husband, entered the room like a whirlwind, desperately trying to find out what had happened. I quickly told him, blaming myself as before. Grief instantly swept

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across his face. 'Do you think it's m y fault?' I asked, I had to know. He swore, not at me, but at the situation, I could sense his anger. According to Davidhizar (1993) when survivors can no longer deny that a death has occurred, many experience a stage of disorganization. Many times negative behaviours are evident as the survivors become accusatory, angry and blaming of each other or the hospital staff. Survivors m a y be demanding and even irrational. Erratic and illogical behaviour m a y be evident. This is w h y bereavement m a y be considered as challenging behaviour. John didn't blame me, I don't think I could have got through if he had have done, I don't know h o w people do. The doctor sitting opposite began to inform of us of Dominic's condition. It was grave, when he had arrived in A&E we were told he was not breathing and did not have a pulse. Immediate Advanced Life Support had been commenced establishing a pulse and blood pressure. My eyes glimmered with hope. 'You know me,' I blurted out to the doctor, ' I ' m a staff nurse on A&E at St James's'. 'Yes, I do,' the doctor replied. 'Thank-you for telling me, I knew your face was familiar.' From that moment mutual trust and respect had been established. The doctor pulled no punches with us, Dominic's condition was critical and they were querying that he was the victim of a Sudden Infant Death. But how could he be? He had a pulse and blood pressure, the doctor explained that successful Basic Life Support leading to Advanced Life Support had enabled them to establish a pulse and blood pressure but he was not breathing for himself. No false hopes were given, the doctor was genuine and honest which we will always value, and should be a consideration when caring for others in a similar situation. Dominic's care was then handed over to the paediatrician w h o was equally caring. He too gave us no false hopes. We were then allowed to see our son in the Resuscitation bay. He looked so small and helpless lying there, I was in a state of utter disbelief. Was this really m y son? I glanced around me through glazed eyes, the whole team were there; anaesthetist, paediatrician, A&E consultant and senior nursing staff - not one below Sister status. It's something that perhaps as nurses we take for granted, but believe me, when it's your own you want all the seniors there. All

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the stops were being pulled out even though it was obvious there was little hope. I sobbed uncontrollably, I couldn't quite believe I was on the 'other side'. I vowed I would never do A&E nursing again! The one thing that struck me as being one of the most caring acts of all, was the fact that someone had folded all Dominic's clothes up neatly and had placed his little playboots on top at the bottom of the A&E trolley. They h a d n ' t been d u m p e d into a hospital property bag as they so often are. It was something so small that meant so much. After careful consideration and discussion with us, we were kept informed the whole time, it was decided that Dominic should be transferred to the Regional Centre where he would undergo a detailed CT scan so that their suspicions of brain death could be either allayed or confirmed. The transfer crew arrived. The two paramedics I knew from work, they hugged me and were fabulous. They apologized that we were unable to travel with them because the ambulance was full and explained that they did not need to use blue flashing lights or sirens because Dominic was as stable as he was going to get. The doctors and nursing staff were equally supportive. They left for the Regional Centre. We followed in a hospital taxi. Paediatric Intensive Care Unit (PICU) was a daunting place. When we arrived we were met b y Dominic's named nurse, she introduced herself and the other doctors who were attending to Dominic. Instantly, we warmed to her. She was calm, confident, efficient, and most important, caring. Dominic's scan was promptly arranged, we were asked by his nurse if we would like to go with him, we declined so they left us behind. Minutes later she came rushing back, 'Come on, y o u ' r e coming' she said. We followed. I ' m so glad we did, immobilized by the shock of the event we didn't know what we wanted or what we needed. We were totally numb and reliant u p o n the nurse to guide us and to tell us. We didn't know that this time now was going to be so precious in the future - that this was all the time we were going to have left with our son. I'm so glad we spent it with him. The scan was performed. I glanced at the pictures only to see that they were all black. At that moment I knew it

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Sudden Infant Death Syndrome (SlDS) on the "other side"

was the end. I w e p t silent tears clutching onto John who was weeping too. I asked the doctor if it was as he suspected. Again with genuine honesty he said it was. We walked back to the PICU barely able to face what was to come next. The nurse explained that it would be when w e were ready to turn off the Life Support machine, not before. H o w can you ever be ready to ebb life a w a y from your only son? John asked if we could leave him there forever and we would visit him everyday. I knew what he meant but we couldn't, it w o u l d n ' t have been right for any of us, would it? The doctor asked if we gave our permission for Dominic to have a post-mortem, of course we didn't. 'Well he's got to have one,' was the reply. W h y bother asking then? This sensitive issue could have been handled better. We ask permission, if that's declined, we do it anyway! Dominic's nurse was with us the whole time, telling us what to do, guiding us and supporting us, encouraging us to hold and cuddle Dominic, like I said I didn't know then that that cuddle was going to have to last me a lifetime or I would have spent the night there saying goodbye. You're in such a state of shock that you just can't absorb what's happening. The nurse was crying too, showing, we felt, immense sensitivity and compassion. It really helped us, particularly John knowing that she cared too. John held Dominic in his arms and at 2210 hours the life support machine was turned off. We left the r o o m and I returned later alone to be with m y precious son for the last time. Photographs were taken by the nurse, an instant for us to take a w a y and a full reel of 12 which arrived at our house a m o n t h later. What a comfort those pictures are, some would think it morbid, but any memories are of value. We were given a card with Dominic's hand and foot prints on too, again something for us to treasure. After all our memories are all we have left. An information booklet entitled 'When your child dies what next? What do y o u do?' was given to us. I put it in m y pocket and forgot all about it. The next day we didn't k n o w what to do. I feel that a follow-up telephone call then would have been beneficial and is something I would like to see implemented within m y o w n department. On reflection I also wish that we had washed and dressed Dominic, but to be honest we never

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even thought about it. If only we had been asked. As I said earlier, y o u d o n ' t know what you want or w h a t you need and you are reliant upon the nursing staff to tell y o u and guide you. As nurses surely we should be giving relatives these sort of choices for them to m a k e the decisions themselves. Since Dominic's death we have had a tremendous amount of support from the health care professionals. Recently I returned to the local hospital A&E department where I spoke in depth with the A&E consultant and paediatrician involved in Dominic's care. They were marvellous, nothing was too much trouble, and I feel that they helped me to move along the grieving process slightly. The one person, however, without w h o m I couldn't have m a n a g e d over the last 17 months is m y health visitor. She has been there to share all the b a d times, the ' d o w n ' days and weeks, of which there have been plenty. Recently we went to the FSID regional conference together and we were described as 'the perfect example of the bond between m u m and professional'. I feel that she has demonstrated 'caring,' above and beyond the call of duty. Thank y o u with all m y heart. I have changed tack n o w from saying 'I a m never returning to A&E nursing'. I n o w say 'I am proud to be a m e m b e r of such a caring profession!'

Summary My o w n experience of sudden death will remain with me lifelong. I hope that whenever I am able to face such a situation again I can give the same expert nursing care with such empathy, understanding and compassion that we were shown. Because it does matter h o w we care for the newly bereaved relative, and there is ample evidence that the quality of the initial care provided has a major impact on the relative's bereavement (RCN British Association for Accident and Emergency Medicine 1995). References Davidhizar R 1993 Helping survivors cope with sudden death. The Healthcare Supervisor June, 4 1 4 6 Ewins D, Bryant J 1992 Relative Comfort. Nursing Times 88:61-63 Morgan J 1997 introducing witnessed resuscitation in A&E. Emergency Nurse 5: 13, 14, 16, 18

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RCN British Association for Accident and Emergency Medicine 1995 Bereavement Care in A&E Departments. Royal College of Nursing, London The Foundation for the Study of Infant Deaths 1995 Questions and Answers about Cot Death. FSID, London

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Wright B 1991 Sudden Death. Churchill Livingstone, Edinburgh

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