Twinkle Twinkle Little Star

ZOE

By Catherine North

To Oliver - the best brother in the whole world.


This book tells the story of our daughter Zoe. She was our beautiful second child. Her elder brother Oliver completely adored her. Within the first few weeks of her life we realised that she was ill. Nothing could have prepared us for the events and news which followed.


INTRODUCTION

This book is an account of the short life of our brave daughter Zoe who died of a rare genetic disorder when she was seven months old.

The first part of the book details Zoe’s life and the second part tells of how we, as a family, coped after her death. Our son, Oliver, was three years old when Zoe died and I describe the effect this had on him and how we answered his many questions.

There are many reasons for writing this book. First and foremost, for Oliver. He has been wonderfully understanding throughout the whole ordeal. His detailed memories of his sister, although now very vivid, will I’m sure fade as he grows older. I hope that in the years to come he will sometimes read this book and remember, with love and pride, how he helped us care for Zoe.

This book is also to say thank you to our family and our many friends whose support has been invaluable over the last few years. I hope it will fill in some of the gaps for them and answer any of the questions they didn’t like to ask.

Thirdly, contained within this book are the answers to many questions that we needed to know. When we first knew of Zoe’s diagnosis we had no idea how to approach Oliver and how to explain to him that Zoe might only live for a short time. There were no completely relevant books offered to us, and we didn’t really know where to begin. But, we managed, and Oliver is now a well-balanced five year old. Maybe this book can offer some ideas to other families in similar situations and help them through a difficult time.

And, finally, I have completed this book for me. Whilst writing it I have re-lived all the joy, pain, excitement, despair and heartache. It has been extremely difficult, at times, to put into words the sheer depth of some of the emotions we felt, but I hope I have managed to convey at least some of our feelings.

PART ONE

AUGUST, SEPTEMBER, OCTOBER

"It's a girl!". The midwife's words were such a shock to us as we'd been convinced all through the pregnancy that this was another boy. It was 09.25 hrs on Tuesday 23rd August 1994 and our daughter, Zoe, had just arrived into the world after a very quick labour. She was perfect in every way and weighed 7lbs 2oz. Her birth had been induced early at 39 weeks of pregnancy. This was due to the fact that three years previously when our son Oliver was born he had ABO incompatibility which was severe enough to require a complete exchange blood transfusion.

There was no easy way of predicting whether Zoe would be affected or not, so it was thought that early arrival and quick detection should reduce the severity of the problem should it occur. As we cuddled our new baby daughter we wondered if we could detect a slight jaundice, but, blood levels of the pigment bilirubin were within the acceptable range so it was agreed that we could take her back to the ward with us and the medical staff would keep a close eye on her. A telephone was wheeled into the delivery room and we began ringing family and friends to spread the news of the birth.

My husband, Keith, rang his mother who was staying at our house caring for Oliver and he arranged to collect them both that afternoon and bring them to the hospital. My parents were on holiday with my brother and his family in Bournemouth so we decided to try and contact them at lunch time. Keith and I kept looking into the little cot at the tiny sleeping bundle and we really couldn't believe our luck. She was beautiful.

It was no surprise when, about three o’clock, we were told that the blood bilirubin levels in Zoe were rising and that she must go under the ultraviolet lights. She could still stay on the ward with me and an incubator was prepared in the nursery. Keith went off home to collect his mother and Oliver.

At four o’clock an excited Oliver arrived to meet his new baby sister for the first time. He loved her from the moment that he saw her. She was lying on her back in the incubator with a nappy on and two squares of gauze covering her eyes to protect them from the ultraviolet rays. He stood on tip-toe and gazed in wonder at the sleeping baby in the incubator. He had brought with him a present for Zoe which was one of his teddies that he had wrapped many weeks before and had kept in his bedroom waiting for the arrival day. In return, much to his amazement, Zoe also had a present for him! Keith and I had chosen a little Matchbox police car which we knew he would love, but Oliver just could not understand how she had got out to buy it!

By 5 pm on that first day Zoe's bilirubin levels were rising sufficiently for her to be taken to the Special Care Baby Unit (SCBU). I was not unduly worried, or surprised, as we had all been down this path before. Keith had, by now, taken Oliver home so I quickly rang him to tell him that Zoe was being moved before accompanying her to the Unit. The Sister of the SCBU was the same as when Oliver was admitted three years previously with the same problem and she remembered us all clearly. It was nice to see a friendly and familiar face.

As Zoe had taken well to breast feeding it was decided that I would continue to feed her but ‘top-ups’ of formula milk would be given via a naso-gastric tube after each feed. The Unit would ring the ward if I was required to feed my daughter during the night.

Keith came back that evening and we visited Zoe. She was now having double phototherapy and the levels were continuing to rise. Whilst we were visiting that night another baby was brought into the Unit. We recognised the new father immediately. His name was Richard, and he was the husband of a friend, Ruth, who is a Staff Nurse at the hospital where I work. We had been patients on the Maternity ward together and we knew that we were both being induced on the same day. Poor Ruth was unable to deliver naturally after many hours of trying, and eventually had a Caesarean Section. They also had a daughter, whom they named Charlotte - a friend for our little Zoe....

Zoe remained in the SCBU for another three days. The bilirubin levels reached a plateau and then finally began to fall. I fed her four hourly, day and night, and she was topped up with milk and water. She looked well and alert.

Late on the Friday afternoon I was finally allowed to have my daughter beside me on the ward, and, at night, she was wheeled into the nursery with the other babies whilst I slept. It was wonderful to have her beside me and be a ‘normal’ mum at last. Zoe was still jaundiced and her blood was checked four hourly but the levels remained below that which required phototherapy. If the levels stayed constant and did not rise then I would be allowed to take her home the following day which was Saturday.

At 11 o'clock on Saturday 27th August an excited Oliver arrived with his daddy to collect his new baby sister and take her home. He was very proud, and he wanted to help with every little detail. He was most upset that the motion of the car sent his little sister off to sleep, and she wasn't awake when he and Daddy carried her, in her car seat, over the threshold.

After a lunch of fish and chips, interrupted by several phone calls welcoming us home, I looked at the various cards and letters which had arrived to celebrate little Zoe's arrival into the world. My parents called in at the house on their way back from their holiday, expecting then to go on and visit us at the hospital. They were most surprised to see us at home with Zoe, and Oliver proudly showed off his new baby sister. Keith's mum, Peg, arrived later that afternoon and then one of his brothers, Simon, and his girlfriend, Rachel, so by 6 pm there was quite a houseful welcoming the new addition to our family.

The next day more family visited. Kevin, another of Keith’s brothers, with his two boys, Christopher and Nicholas arrived. Oliver and his cousins spent a very loud half and hour in the garden! Later that afternoon we took Zoe back to the hospital to have her blood bilirubin levels checked. These were finally falling so we were discharged from the hospital on the understanding that we could return at any time if we were worried.

The Community Midwife, Rosemary, called daily and weighed Zoe. We knew Rosemary from Oliver’s birth and we had tremendous faith in her. It was, then, slightly unnerving when on Day 9 of Zoe's life she appeared to have lost a fair amount of weight and had diarrhoea. Rosemary called our family GP Dr Searle Barnes, and he visited and agreed that Zoe should be seen on the Children's Ward at Southlands Hospital. This we did the following morning and saw the Consultant Paediatrician Dr O'Connell on his ward round. Stool specimens were taken from Zoe and he recommended that a ‘close eye’ was kept on her. A slight discrepancy in the midwife's scales and the hospital scales meant that she didn't appear to have lost as much weight as we previously thought so we all breathed a sigh of relief and took her home again.

The next few weeks passed by uneventfully. The Health Visitor, Sue, called at home daily to weigh Zoe and then we began going to the Baby Clinic on a Wednesday afternoon to check her weight and so on. She seemed to be feeding well and gaining weight. Oliver adored his new sister and spent every spare moment beside her carrycot filling her in on all the details of life and stroking her back.

One morning Keith and I were upstairs in the office while Oliver was downstairs eating a yoghurt sitting beside a sleeping Zoe. I heard him chatting to her so I went downstairs to find him spooning yoghurt into her mouth whilst she was still asleep! He thought that we hadn't been giving her any food and that she would be hungry!

We had a constant daily stream of visitors. Friends and relatives came with gifts and the poor postman was overwhelmed with parcels for our house. We have foreign students to stay with us most of the year, and many of them (approximately 80) kept in touch. Once they heard of the birth they all began sending presents for Zoe. We had baby clothes, toys and utensils from all over the world - Austria, Germany, France, Spain, Canada, and Norway. Their generosity was astounding.

On the 6th October Zoe and I had our six week post-natal checks. We were both seen by our GP and Zoe also had an appointment at SCBU for a routine check. Our GP was happy with me but commented that, "This baby doesn't seem to relax her legs". This he found worrying but she was normal in every other way and so there seemed no need for concern. At Southlands Hospital that afternoon, during Zoe’s six week check, the Senior House Officer noted her "excellent head control" as she could hold her head up and extend her neck for long periods.

Four days later, October 10th, it was Oliver's third birthday and many family and friends came to our house with cards and presents. He had a wonderful time and took great care to show his sister all the presents that he opened.

Towards the end of October we all went down with colds and coughs, and, one day Keith carried Zoe into the kitchen on his chest and said to me, "Guess who's got the cough?". We thought that she would shake it off in a few days so we weren't unduly worried. After all, many babies have coughs, don't they?

Zoe was still coughing a couple of weeks later so her Dose II vaccination, of Tetanus, Diphtheria and Polio, was postponed to a later date as the appointment card advised that no unwell babies should be vaccinated. She had had her Dose I four weeks previously.

NOVEMBER

Keith and I were both deeply asleep at 2 am on the night of 12th of November when we were woken by a choking sound coming from Zoe who was lying asleep in her carrycot by our bed. Within seconds we had picked her up and laid her on our bed. Her neck was rigid and every few seconds a cough / choke would rack her body. Although she seemed to be choking there was nothing that she could be choking on. Her mouth, which I had checked for any obstruction was completely clear, and her last feed had been four hours previously. In desperation we wondered if it was a form of croup as Oliver had suffered from this as a baby so we ran downstairs with Zoe and turned on the kettle and quickly began filling saucepans with water and putting them on the hob. I held a rigid Zoe, face down above the steam, but this didn't seem to help.

The fact that she was, I think, still asleep didn't improve matters as she was not responding to us at all. Just as I was thinking that we would have to dial 999 for an ambulance the choking subsided and our peaceful, sleeping, relaxed Zoe returned. As a trained nurse, the helplessness of those few minutes of blind terror were indescribable. To watch my own baby unable to breathe properly but unable to help her was terrifying beyond belief. Eight minutes earlier we had all been deeply asleep, then suddenly we were thrown into the most terrifying time of our lives.

Keith and I took turns to stay awake and watch her for the remainder of that night. She woke in the morning at the usual time and I fed her. The cough though, had now changed, and there was a constant throaty rattle every time she took a breath. She was looking very pale and had dark rings under both her eyes.

I sat downstairs in an armchair in the lounge and held her all morning, rubbing her back and trying to get her to give a good cough which I felt would clear the ‘fluid’ in her throat. Peg called round at lunch time and she re-enforced our fears that things were not ‘quite right’ and so we called out the duty GP.

Dr Nelson arrived 15 minutes later and examined Zoe thoroughly. She felt that "things would probably be fine" but she wanted Zoe admitted to Rainbow Ward, the Children's Ward at Southlands Hospital, for observation. She made the relevant phone calls while I packed a bag, and when she, and Peg had left, we set off for the hospital.

Zoe received regular nebulizers and 24 hours later she was sounding better. She still had her cough, but it sounded looser and everyone seemed satisfied. Her paleness had been noted and her haemoglobin tested and shown to be within normal ranges, even if on the low side.

By now Zoe was 12 weeks old and had developed such a beautiful smile she would, literally, beam at people! It was during the ward round the following morning, when she was looking and sounding a lot better, that she gave the Consultant, Dr O'Connell, the most wonderful smile and he said, "There can't be much wrong with a baby that smiles like that!" and we were duly discharged.

As I work full time as a Deputy Sister at a local hospital and had taken Maternity Leave to have Zoe I was, therefore, due back at work when she was 14 weeks old. I had done the same when Oliver was born - having had just 18 weeks off altogether. He had been a larger baby (9lbs 10oz) and had gained weight quickly so was eating solids and devouring gallons of breast milk by the time I returned to work. I used to feed him at 6 am then go to work and Keith would bring him in at lunch time for a feed. I would sit holding a baby to my breast with one hand and a sandwich in the other! Our system worked very well for several months and we were planning to do the same with Zoe.

So, on 17th November, whilst Oliver was at playgroup, Keith, Zoe and I went to see my Nurse Manager, Angela Bailey. We confirmed details for my return to work in a couple of weeks. She did offer me part-time work, but, being just before Christmas, and having been on half pay for several months we really needed my wages to return to normal. My agreed start date was 28th November.

Zoe's Dose II vaccination was due the following day but I still felt that she had not recovered from her cough so I cancelled it yet again and made another appointment for the following Wednesday when we would be at the Baby Clinic anyway.

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We had kept in touch with Ruth, the nurse who had given birth to Charlotte on the same day that Zoe was born, and she and her husband came to visit us on the Tuesday morning. I was slightly perturbed as Charlotte seemed huge compared with Zoe, and she took her bottle feeds so well. Zoe looked pale and frail beside Charlotte but I put it down to the cough / virus that she had picked up.

That afternoon we went off to stay the night with a friend of ours who had just brought a house in Burgess Hill. Karen is a Staff Nurse, and she works on the Children's Ward at a hospital in Haywards Heath. She was to be Zoe's Godmother. Zoe was still coughing and was quite ‘snuffly’ that night, and, as I lay awake listening to her breathing I wondered what on earth we were going to do? We had commenced her on solids a couple of weeks earlier in hope of her gaining more weight, and, as I gave her some porridge early the next morning I decided that I would voice my fears to the Health Visitor at the Baby Clinic that afternoon.

At 2 pm and nearly in tears, I sat cuddling Zoe at the Clinic. She hadn't gained any weight, but she hadn't lost any either. She was still coughing and I was concerned. Things were just not right and I felt uneasy. I told my Health Visitor who, on seeing my concern, told me to see the doctor with Zoe. I arranged an appointment for the following day.

That afternoon I also made the decision to stop breast feeding and give Zoe formula milk. It was a reluctant decision as I felt in some way that I had failed her, but I couldn't see how much milk she was actually getting from me, and she wasn't gaining enough weight despite my feeding her almost constantly. Another reason was my imminent return to work, so I would not be around to continually feed her.

It was upsetting, and I came home to an empty house and cried. What on earth was happening? This was nothing like it was with Oliver. Keith, who had been walking along the beach with Oliver, returned and tried to reassure me that commencing bottle feeding was for the best, and that a lot of mothers have to change for various reasons. I felt slightly better and hot-footed it to Boots before they closed to buy all the necessary equipment. Bottle feeding was a whole new concept for us all.

I saw our GP the following morning, as arranged. He said that Zoe's chest sounded clear, which I found difficult to believe as her cough sounded so ‘chesty’, but he felt that her upper air passages were so small, and as she grew, things would improve. This sounded feasible. He prescribed some Ephedrine nasal drops to try and dry up some of the fluid bubbling around. I left the surgery feeling slightly better - after all, if he wasn't worried, why should I be?

The time came for me to return to work. On Monday 28th November 1994 I woke at 6 am and looked down at Zoe sleeping in her carrycot beside the bed. I noticed how far back her neck was extended, and I thought to myself what a odd position she had managed to get herself into in her sleep. I got ready for work and left at 7.30 am - Zoe was, by then, awake and having her first bottle of the day with her dad.

It was great to be back at work. Everyone seemed pleased to see me and I was continually asked about Zoe and how she was doing. But her cough, by now, was getting worse and worse. She also seemed to be holding her head back most of the time and her favourite position was lying on her tummy on our laps with her head held high, looking at the television.

DECEMBER

Oliver continued to dote on his baby sister. The week that Zoe had come out of the hospital following her birth he had started Playgroup, and, by early December he was enjoying his two mornings a week immensely. On his return, at lunch time, he would by-pass Keith and I and go straight to Zoe to show her his new creation or picture. Invariably they had been made especially for her, and never for us!

Around this time we contacted our local vicar, the Reverend Keith Wood, about having Zoe baptised. He called round to see us one morning and we set the date - Sunday 5th January 1995.

Preparations were now well underway for Christmas. Cards had been arriving for us from overseas for many weeks now, so on 13th December I had a day off from work and we decorated the house ready for the festivities. We planned a quiet family Christmas - just the four of us relaxing at home. Having a large house we normally entertain lots of family and friends at Christmas, sometimes as many as 15-20 people, so this was to be our first one to be spent alone.

On 15th December, whilst I was at work, Keith took 15 week old Zoe back to see Dr Searle Barnes as she was still coughing. This cough had now persisted for eight weeks - more than half of her life. He prescribed some antibiotics to see if they would help, and he also commented on the way that she held her head. Her neck was, by now, quite arched and she always seemed to be looking up at the ceiling. Oliver, at this age, had also spent a lot of time looking upwards - lights above him fascinated him for many months, and he would gaze at them for hours. Apparently, Dr Searle-Barnes had suggested trying the antibiotics, and then investigating her neck extension. It seemed to him to be a long term problem so there was no urgency just before Christmas, afterwards would be fine. Keith agreed.

December 20th was my dad's birthday and I had the day off from work. We all drove to Haywards Heath for a birthday lunch at my parents' house, and my brother, Richard, his wife, Hilary, and two girls, Claire and Amanda, were there too. Zoe gave everyone huge beaming smiles and looked lovely in her pretty pink dress. Her cousins held her on their laps and she had a lovely day with lots of cuddles from all the family.

Two days later, December 22nd, Zoe's cough was worse than ever and she now had a temperature. Her chest sounded really ‘bubbly’ and she was having trouble taking her bottles with all the fluid bubbling in her throat. She sounded terrible and I just knew that we could not get through Christmas with her like this. I insisted that Keith took her back to the doctor's while I was at work the following day, Friday 23rd December. That day, as I dressed for work, I felt very uneasy. I gave my daughter a cuddle before going out the door and she coughed while I held her. It sounded as if she was drowning....

I was at work around 11 am when the phone call came from Keith to say that he had to take Zoe over to Children's Ward at Southlands Hospital as our GP wasn't happy with her condition and wanted her seen by the Paediatricians. I told my colleagues of the conversation. The Day Ward is an extremely caring environment and everyone insisted that I left immediately to catch the hospital bus to Southlands. By now I was upset - the nightmare had just begun, and, although I didn't know it at the time, our lives would never quite be the same again.

Less than half an hour later I arrived at Rainbow Ward and found Keith feeding Zoe, a bemused Oliver by his side. A nurse had checked Zoe’s weight and temperature, and we were waiting for a doctor to examine her. It was a busy day on the ward, every bed or cot was occupied. At 3.30 pm the Senior House Officer (SHO) was free to look at Zoe. He gave her a thorough examination and took a detailed history, and then sent us off to have Zoe's chest X-rayed. As I am a nurse I was allowed to take my daughter to X-ray unaccompanied, and whilst I was there the full reality of the whole situation hit me. The radiographer gave me a lead coat to wear and then asked me to lie Zoe on her back for the X-ray, with her face looking upwards. Zoe just could not do it. Her neck was so arched that she rolled to either one side or the other. It was a physical impossibility for her to lie on her back - there was no escaping from the truth now - there really WAS something wrong with her.

Back on the ward the SHO looked at the films and came over to talk to us. He said that the chest X-ray showed some ‘crackles’ in her lungs which accounted for her cough, but, more importantly, he said, he was concerned about the hyper-extension of her neck as this could indicate a very serious problem. He mentioned the possibility of a brain tumour but said he would have to consult Dr O'Connell, the Paediatrician, and ask him for his opinion of Zoe.

Zoe was quite sleepy by now and she hadn't taken much milk all day. She still had a slight temperature and lay on her side in the cot sucking her fingers and sleeping fitfully. My colleagues from work rang on the internal telephone and asked what was happening. I spoke to them and I remember saying how horrified I was at the suggestion of a brain tumour, but I felt sure that as soon as the Consultant, Dr O'Connell, arrived he would dismiss such a theory.

At 6 pm Dr O'Connell arrived. He is a very kind man with a friendly face. I had met him several times when Zoe had previously been in SCBU and Rainbow Ward and I trusted him completely. After examining Zoe he, to my horror, agreed that a brain tumour was, indeed, a real possibility and an urgent scan of her brain was needed. It was, by now, after 6 pm and everywhere had shut down, over an hour ago, for the Christmas period. Dr O'Connell went off to make the relevant arrangements. The scanner is situated at Worthing Hospital, which is approximately seven miles from Southlands Hospital, and phone calls were being made to call back the radiographers who had only just gone home. The brain scan was arranged for eight o'clock that evening and, as all the ambulance crews were busy, Dr O'Connell volunteered to take Zoe over in his own car. He also explained that, if the brain scan was normal then he would need to do a lumbar puncture to see if she had some sort of meningitis.

I was still dressed in my uniform (and I had been asked by several parents how their children were doing!) so Keith and I agreed that I would take Oliver home, feed him, change my clothes, pack an overnight bag and meet him and Zoe back at the Scanner Room at Worthing at 8 pm.

I arrived home to find the telephone ringing. It was Kevin’s wife, Ingrid, who was ringing to find out what was happening. I recounted the story so far and replaced the receiver in tears. The telephone rang again almost immediately and this time it was Keith's mum. I briefly explained again and said that one of us would ring her after the scan.

I quickly packed my overnight case and gave Oliver a sandwich to eat. I then debated when to ring my parents. I didn't want to worry them unnecessarily, but, then again, if I rang them later to tell them that Zoe DID have a brain tumour they would be totally shocked as they'd have known nothing about it. I decided to ring and tell them what was happening, and said I would be able to let them know more later on. They offered to come down and look after Oliver for us, but I felt it important that Oliver was with us and involved in whatever was happening. I thought it would have been more frightening for him to be taken away from us.

As Oliver and I walked through Worthing Hospital to the Scanner Room that night the corridors, all decorated for Christmas, were deserted. I could just not believe that only that morning I had gone into work as usual, and now, here we were waiting to find out if our daughter had a brain tumour. It all seemed so unreal.

Waiting for us in the ante room of the scanner department was Keith and Dr Bull, the Consultant Physician with whom I work. Anyone who is familiar with Worthing Hospital will know that the corridors are stalked at night by the locally famous Dr Bull and tonight was no exception. He had been walking past when Dr O'Connell and Keith had arrived with Zoe and he kindly stayed with us during the scan. Zoe was, by now, being prepared and she was heavily sedated so that she would remain still for the scan.

Apparently, Keith told me, that when the sedation was gently squirted into Zoe’s mouth an hour earlier on Rainbow Ward she had choked on it and gone a blue colour. Dr O'Connell had seen this episode and had used the suction machine to suck out the secretions and medicine left in her mouth. Gradually her colour had returned to normal. The sedation had, by now, completely relaxed her and, for the first time in many weeks her chin was able to touch her chest.

Keith, Oliver, and I remained in the waiting room while Zoe's little head was scanned. I briefly recounted to Keith the phone calls I had whilst at home. After a while the door opened and Dr O'Connell came in and said, "Good news! No tumours, it looks completely normal!". We were lulled into a false sense of security - we thought that the worst thing that Zoe could have had was a brain tumour, and as she hadn't got this, then surely everything now would be fine?

Whatever it was it was obviously less serious and less of a threat than a brain tumour. Instantly our spirits were lifted and we wanted to tell everyone the good news. She was going to be okay - she didn't have a brain tumour. Little did we know that this was the first of many negative test results, and this pattern of intense worry then absolute elation was to be repeated time and time again.

When we arrived back on Rainbow Ward at Southlands Hospital Zoe was heavily sedated so Dr O'Connell took the opportunity to do the lumbar puncture while she was quiet and still. The results would be known later that evening, and, indeed, about 11 pm the doctor came to inform me that the fluid taken was clear. She did not have meningitis.

I spent that night on a foam chair that opened out to make a bed and I lay on the floor next to Zoe's cot. Keith had taken Oliver home so that they could both get some rest in their beds. Keith is a Registered Childminder and he had a new child and his mother arriving to meet him at our house the following day, which was Christmas Eve. He, therefore, needed to get some sleep before Ryan and his mother arrived. There were also some last minute Christmas presents that had to be delivered to our families houses, so Keith would come to the hospital when all these tasks were completed.

As I bedded down for the night I began to prepare myself for a very different Christmas to the one we had planned. As Zoe had only just been admitted to the hospital and such serious conditions had been discussed with us that evening I thought it very unlikely that we would be home for Christmas Day. I felt very upset for Oliver's sake and wondered what sort of Christmas was in store for him. Zoe was still sleeping off the effects of the sedation and she had not stirred. I fell asleep immediately whilst listening to the night nurses quietly chatting at the nurses' station just in front of me.

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I was woken by Zoe whimpering at 2 am and I jumped up to lift her out of the cot. Her skin felt very hot. One of the night nurses, Clive, on seeing me get up, came over and so I told him how hot she felt. He placed a thermometer under her arm and went off to make me a cup of tea and get Zoe's bottle. Several minutes later, another nurse, Tracy, came over and read the thermometer. Zoe's temperature was 39.8 C, which is high. She was given a paracetamol suppository to reduce her temperature, and an electric fan was plugged in beside her cot to cool her down. I removed her sleepsuit. She took a little milk from her bottle and then fell asleep again so I laid her back in her cot and got back into bed myself. Sleep then evaded me as I wondered why her temperature had suddenly gone so high, and what on earth could be wrong with our baby.

As I lay thinking on my makeshift bed on the floor, ward activity the next morning started. Lights went on and drug rounds began. It was Christmas Eve. Zoe was still sleeping so I took the opportunity to go and have a shower. As I went out of the ward I passed the day shift arriving and one of them was a familiar face to me. Rita had been a Nursery Nurse on the Children’s Ward when I trained back in 1979 and I clearly remember her giving me instructions as a student nurse on how to make up the formula feeds for the babies on the ward. She also happens to be a very good friend of our lovely neighbours, Ann and Richard.

Rita was allocated to look after Zoe that morning which was nice for me as talking to her gave me some relief from constantly thinking about the events that were taking over our lives.

Zoe's temperature had gone down and she was still sleeping. At 9.30 am she began stirring. I changed her while Rita prepared a bottle of milk and I began to feed her just as the doctors were starting a ward round. Just as the team of doctors, led by Dr O'Connell, approached Zoe she chose that exact moment to choke on her milk and turn a horrible horrible blue colour. I turned her on her tummy with her face down and hit her back hard several times but she was still blue and not breathing properly. A doctor shouted, "Put her on the bed. QUICK," which I did, and he used the suction machine to suck out the milk from the back of her throat, and then gave her some oxygen. Gradually her colour returned to normal. I was very shaky after this episode - all I kept thinking was, had we been anywhere else apart from the hospital we would definitely have lost her.

Following this brief interruption to their round Dr O'Connell instructed his doctors that Zoe was to have nothing else orally. A naso-gastric tube was to be passed and she was to have her feeds this way. He also asked that her oxygen saturation be monitored constantly which involved attaching a little probe to her foot which then displayed her blood oxygen levels on a screen by her cot.

Keith and Oliver arrived later in the morning and I took the opportunity to go to the Staff Restaurant and buy some sandwiches as it was now 36 hours since I had eaten. Zoe sounded very chesty, and moving her around seemed to make the coughing worse so we tended to let her lie sleeping in her cot most of the time. She was having regular nebulizers to try and ease her chest and the naso-gastric tube had been passed into her stomach. She was having small hourly feeds of milk.

My parents arrived in the afternoon and Keith suggested that I go back to our house with them and have a few hours rest, which I did. Oliver came with us and it was infuriating to be stuck in queues of traffic on the journey home - the whole world, it seemed, out in their cars in high spirits on Christmas Eve gathering their last-minute Christmas items. I felt very much that events were out of our control and I had no choice but to go along with this nightmare. We would get through it and then there would be another Christmas next year - at the moment our priority was to concentrate on our daughter.

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My thoughts wandered to last Christmas. I had suspected towards the end of December 1993 that I might be pregnant, but dared not get too excited in case it was not true. We had been trying for a brother or sister for Oliver for nearly two years now and I was beginning to wonder if something was wrong. A series of investigations had just proved negative, and now, there I was with my period two weeks late. By Christmas Eve I was almost convinced I was pregnant, so I hurriedly brought a pregnancy testing kit on my way home from work before the shops shut. Five o'clock Christmas morning found me in the toilet staring at the bright red dot that told me it was all true! I rushed upstairs to tell Keith of the best Christmas present that he could possibly imagine and we laughed and cried with joy.

How very different it all was this Christmas Eve. When we arrived home the Christmas tree lights were on, the decorations glistened and sparkled but all the excitement had gone. The phone call I had received from Keith at work just the day before had changed my whole world it seemed. In the couple of hours that I was at home friends called with presents for Oliver and Zoe, unaware of the problems that we had been facing. The phone rang repeatedly and I returned to the hospital at 5 pm having had little rest. My parents left the hospital around 6 pm I wanted them to continue with their planned Christmas at my brother's house and assured them that we would all be fine.

Within a few minutes of returning to Zoe's bedside a group of carol singers gathered around us singing ‘Silent Night’. It brought tears to my eyes - all these hospital workers giving up their precious time to try and lighten our Christmas. Suddenly I was ‘on the other side of the fence’ having had, for many years, tried to ensure the patients had a reasonable Christmas, I was now on the receiving end and it was a very emotional time for me. A Father Christmas accompanied the carol singers and a wide-eyed Oliver was invited to delve into the sack that he was carrying and bought out a handful of sweets which pleased him immensely. Shortly after this Oliver and I left the hospital to go home for the night. Keith stayed with Zoe on the ward.

It was very sad driving home to a cold and empty house on Christmas Eve leaving Keith and Zoe behind. Once indoors Oliver hung his sack by the chimney in our bedroom and went quietly off to bed. I then filled his sack and then arranged all the childrens' presents around the tree downstairs before retiring to bed myself. It was, already, the worst Christmas I had ever faced.

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Christmas morning I woke early, showered, dressed and waited for Oliver to wake up. At 8 o'clock he was still sleeping soundly and I was desperate to get off to the hospital. I stood on the landing and called, "Oliver". "Yes, Mum," came the reply. "I think he's been!" I shouted, and a tornado rushed along the landing. He was so excited when he saw his sack full of presents and dragged it up onto our bed. He opened the sack on the bed with me and then we went downstairs and he saw all the other presents. He was just so excited, but despite his overwhelming enthusiasm I felt so sad that this was just not how it was supposed to be and the tears flowed. As he ripped open parcel after parcel he kept asking, “But Mum, why are you crying? He's been. Look, he's been!". We then decided to take the rest of the presents to the hospital to open with Keith and Zoe, so I hurriedly dressed Oliver and loaded the car. We drove through the deserted streets to the hospital. Zoe had had a fairly peaceful night, and Keith had managed a few hours sleep in-between feeding her via the naso-gastric tube. She was sleeping soundly when we arrived and Oliver excitedly carried on opening his presents.

Around 10 o'clock our friend, Roy, arrived with his daughter, Katie. It was a lovely surprise as we hadn't thought that we would see anyone that we knew that day, and shortly after them Simon and Rachel arrived. It was wonderful to see them all and we opened a small bottle of champagne that we were going to have with our Christmas dinner.

Everyone on the ward was excitedly waiting for the arrival of Father Christmas, and following a visit from 10 local firemen in uniform, the gate opened and in HE walked carrying a large sack of presents for all the children. The ward was almost full of children this Christmas Day so we had a long wait until he reached Zoe's bedside. By prior arrangement Father Christmas gave Oliver his main present from us, an expensive construction set which we dreaded him giving to the wrong child! We recorded some of the mornings activities on our cam-corder, and to this day, these few minutes of Zoe on the video have become part of our special and precious memory of her. She spent her Christmas Day lying on her side in her cot, sleeping and sucking her two fingers.

Her cough was terrible, and she was still wheezy and needing regular nebulizers. We tube fed her small amounts of milk hourly. To move her out of the cot seemed to encourage her to cough so we left her lying on her side, and when she was awake we put our faces parallel to hers to talk to her. There were no smiles - she was too poorly, but she looked intently into our eyes. Her Auntie Karen had given her a toy Bambi for Christmas and this lay beside her in the cot.

Dr O'Connell visited Zoe twice on Christmas Day, listened to her chest and asked how we were all coping. In fact, for the next five days he came to see Zoe every morning and every evening, even when it seemed he saw none of the other children, he always saw Zoe.

On Christmas Day Keith and I stayed at the hospital to be near both Oliver and Zoe, but after this Keith stayed the nights beside her and I stayed the days. Oliver stayed at home with who ever was there at the time, and visited his sister twice a day at ‘swop over’ time. It was a very good arrangement and it meant that Zoe was never left alone, one of us was always there for her.

On 27th December it was noticed that Zoe's oxygen levels were continually dropping to between 80% - 90%. Dr O'Connell decided that she should be in a ‘head-box’ to give her a constant supply of oxygen and humidity and this immediately improved her levels and they remained between 95% - 100%. The head-box was a clear perspex square which rested on the mattress and enclosed the upper half of her body. Apart from making her hot and sweaty she suffered no ill-effects from the box and was still able to lie on her side sucking her fingers quite comfortably.

Around this time a new friend for Zoe was admitted to the next cot. Her name was Sophie, and she was only a few weeks old. Sophie also had a cough. Her mum, Mandy, and I got on famously and we spent many hours sitting by our babies cots chatting. She and her husband, Stephen, also had another child, Alexander, who was a similar age to Oliver. Mandy and I provided great support for each other when we were feeling low, and, after a couple of days I felt like I had known her for ages.

As I mentioned earlier, I work as part of a small team on a busy Medical Day Ward. We are fortunate enough to have every weekend and every Bank Holiday off, a luxury not normally associated with nursing. Therefore, having had Christmas Day, Boxing Day and the following Bank Holiday off I was expected back at work on the Wednesday. I rang the ward Sister, Clare, at home on the Tuesday evening and explained that Zoe was still poorly. Without hesitation she told me to take as much time off work as I needed and not to worry. This was a great weight off my mind - although I wanted to work and not let my busy colleagues down, I knew that I couldn't leave my daughter alone in hospital when she was so ill. I began allocating Annual Leave days for the following week and hoped, at least, to get Zoe out of the head-box and back to bottle feeding before I returned to work.

Many family and friends visited Zoe during the week between Christmas and New Year. New Year's Eve went by virtually unnoticed. Keith was at the hospital with Zoe, and I was asleep at home with Oliver. The words "Happy New Year" were meaningless even then, and at that time we had absolutely no idea that this was to be the start of the saddest year of our lives.

JANUARY

On New Year's Day Zoe's chest finally sounded slightly better and her oxygen saturation levels had improved. The head-box and the naso-gastric tube were removed. It was wonderful to cuddle her without having to quickly return her to the cot. I offered her bottles but she just wasn't interested so the naso-gastric tube was re-introduced - it was thought we had tried too soon. During the re-passing of the tube Zoe became very distressed and had another episode where she turned a horrible blue colour.

It was everyones’ opinion that it would only be a matter of time before she would become interested in sucking from the bottle again, and so we tried encouraging bottle feeding before each naso-gastric feed when she was probably the hungriest. As her condition was improving Dr O'Connell began organising his team to arrange various tests to try and explain Zoe's neck extension. Several theories were under discussion. One was gastric reflux, the reflux of acid from the stomach up into the gullet, producing a soreness which can be eased by holding the head back. Another possibility was a neurological problem, therefore Zoe would see the Consultant Paediatric Neurologist when he came down from a London Hospital once every month. Various letters were written by the doctors and appointments made.

On 6th January I really tried persevering with her bottle feeding - I felt that we only had to crack this problem and then we could go home and have what ever other tests were needed as an out-patient. She did manage 50 - 60 mls of milk orally at some feeds but it was a real struggle. Inexplicably she seemed to have lost the ability to suck overnight.

That evening I left Keith at the hospital trying to encourage her with yet another bottle of milk. Somehow, over the day, her cough had again returned and the physiotherapist noticed a increase of fluid in her left lung. I was convinced that the milk was going there.

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The next morning, January 7th, I was at home at 7.30 in the morning when the phone call that I had been dreading came. I had been dressing Oliver when I heard the telephone ringing, and I knew before I picked it up that it was Keith with bad news. He told me that Zoe had stopped breathing in the early hours of the morning and it had taken two hours before the medical team could properly resuscitate her and get her breathing normally again. I remember asking Keith, “Is she still alive?" and when he said she was I quickly put Oliver in the car and drove to the hospital.

When we arrived at Zoe's bedside I cried. She was back in the head-box with the oxygen saturation probe back on her foot, a ‘drip’ in her little arm, and another tube down her nose and into her stomach. What had she done to deserve all this? Just as things were starting to improve we were now back to square one.

Keith was still shocked and upset over the night’s events, and he was also very tired. I rang my parents and asked them to have Oliver for the day whilst we dealt with this crisis, and then I went back to Zoe's beside to think. We had now been at Southlands for two weeks and although everyone had been absolutely wonderful to us we were still none the wiser as to what was wrong with our daughter. It seemed that all the specialist knowledge and tests she so desperately now needed were elsewhere, and time seemed to be running out for us. Appointments to see a neurologist etc. in a month were no good to us now. I am normally a very placid person but now I wanted some action and I would go to any lengths to get the care that my daughter deserved.

We had sat down and waited for long enough. I asked the nurses if Dr O'Connell was on duty and was told that it was his weekend off. I asked if he could be contacted. I had no doubt that, if he was in the area, and he knew that we were in trouble, he would come, but unfortunately he was away. Therefore, I asked if we could be moved to another hospital. A hospital specialising in children that had all the necessary equipment available (ventilators, and so on). The nurses agreed, spoke to the doctor and following several phone calls it was all arranged. We were going to Nicholson Ward at the Royal Alexandra Hospital for Sick Children in Brighton as soon as the ambulance arrived.

I accompanied Zoe in the ambulance with Sam, the Staff Nurse from Rainbow Ward, and Keith followed in the car. Zoe slept soundly all the way to Brighton, and when we arrived at the hospital we were shown to a small cubicle containing a cot, sink, chair and locker. Three sides of the cubicle were made of glass from waist level upwards, enabling the occupants to see out to the corridor and into the adjoining cubicles on either side.

We seemed to repeat the same story about the events in Zoe's short life countless times - to the nurses for their records, the Registrar for her clerking, and then around 10 pm that night to the Consultant Paediatrician, Dr Trounce. Time and time again we told the events of the night at home when Zoe choked and we tried to describe to them how she sounded. Dr Trounce felt that Zoe's symptoms were possibly caused by a narrowing or partial blockage in her airway, and that due to this she had learned to extend her neck to widen her trachea and help her breathing. All this sounded feasible, and a look down the air passages whilst Zoe was anaesthetised (a bronchoscopy) would confirm this. This test was to be performed by the Ear Nose and Throat (ENT) Consultant, Mr Tranter, on the Monday afternoon’s ENT list in two days time. It was decided to observe Zoe until then, and because of the previous nights' episode she was to be kept starved, receiving her nutrition through her intravenous infusion.

Keith then went home to relieve my parents who were at our house with Oliver, and I bedded down for the night on a mattress on the floor (again!) by Zoe's cot. She was poorly, her cough had returned, and so had her temperature. Intravenous antibiotics had been commenced because of her probable chest infection, and she was very sleepy. Ralph, the night nurse who was caring for Zoe that night, was kept very busy as the machine regulating Zoe's infusion alarmed every time she moved or coughed in her sleep.

Keith and I decided that due to the increased distance now involved we would swop over once a day instead of twice, so each of our shifts would include one night and one day. Therefore, I was not expecting to see him again until 5 pm the following day. I spent the time sitting next to Zoe contemplating what her future may be. Did she have a partial blockage or a narrowing? If there was a partial blockage was it a cyst or a malignant tumour? The ENT surgeon came to see me that afternoon and he examined Zoe. He was a doctor I had worked with ten years previously on the ENT ward at Worthing Hospital and I knew that he was very good at his job.

He explained the procedure, and mentioned that he'd seen a child with similar symptoms a year previously and that child's problem had been a narrow trachea which had corrected itself as the child grew. I have to admit, though, I was shocked when I signed the consent form and saw the words, "Oesophagoscopy, Laryngoscopy, Bronchoscopy, and ?proceed to Tracheostomy" written.

Although this would have been the most obvious natural progression of events it was a situation that I had not even considered and it was a real shock to see it written in black and white, and applying to my child. Mentally I began preparing our house to care for a baby with a tracheostomy - converting a bedroom into a medical room with all the necessary equipment in.

The following day, Monday, Keith and I were both with Zoe as she was prepared for the anaesthetic. The Anaesthetist had requested an oral pre-medication which I was unhappy about. I knew my daughter well enough to know that she couldn't tolerate fluid in her mouth (we had had enough blue episodes with antibiotics at home and milk in the hospital to realise this). I questioned the method of administration and the Anaesthetist was contacted. He stuck firmly to his guns and oral pre-medication it was to be.

At 1.30 pm two nurses, Sally and Maraid, came into the room. They had the drug in a syringe ready to dribble into Zoe's mouth. Keith and I were very apprehensive, and, as the liquid entered her mouth she began to gag and choke. The nurses abandoned the procedure and the Anaesthetist was contacted. He promptly changed the pre-medication to an intramuscular injection.

Half an hour later Keith and I were carrying Zoe in the lift down to the second floor where the operating theatres were situated. Maraid, Zoe's nurse, was with us. We kissed Zoe's forehead in the Anaesthetic Room and left her with Maraid while we went back up to her cubicle to wait. My dad arrived while we were waiting and we were all sitting chatting when the door opened, and in walked Dr O'Connell from Southlands Hospital.

He greeted us like long-lost friends - shaking Keith's hand and kissing me on the cheek, apologising profusely for not being there when we had needed him the most. He asked about the events of the weekend, and after telling him this we told him of the current theories regarding Zoe's illness. He added that he was pleased that we were now in Brighton where there was more specialised paediatric care and that he hoped we would soon receive some answers. He also added that he had seen a few cases of children presenting with bizarre symptoms for which no cause had ever been found - despite investigations at many hospitals, including Great Ormond Street Hospital.

This was the first time that Great Ormond Street Hospital had been mentioned to us and I dismissed the thought almost immediately, feeling sure that within the next hour we would have our answer to the problem. I had already worked out that a bronchoscopy alone would only take about half an hour, where-as a tracheostomy would take an hour or two, therefore the longer that Zoe was away from us the more likely it would be that she would return with a tracheostomy.

Dr O'Connell left us to go and speak to Dr Trounce about Zoe, and five minutes later a smiling Mr Tranter, dressed in his theatre blue's, came into the room saying, "Normal!". Keith and I were silent. He spoke again, "Everything looked completely normal. All her tubes looked the correct size for her age and nothing was seen to explain her symptoms". We were flabbergasted, and he must have thought us quite odd as we did not share his joy.

Certainly, it was good news that she did not need a tracheostomy, but if there was no narrowing and no blockage then what was there that could have caused such major symptoms? Part of me felt that following the weekend’s events at Southlands Hospital when Zoe had such a major episode, they, only then realised the seriousness of the situation. Now we were in new surroundings and I felt that she now had to prove to all these people that she had a problem, and, no-one here would fully understand until they too had witnessed it. This unfortunately meant that we had to wait for her to have yet another episode.

That night Zoe was nursed on the Intensive Therapy Unit. This was because, following the trauma of the investigation her small air tubes were likely to become inflamed and this inflammation, if severe enough, would require treatment with a temporary tracheostomy. We were not out of the woods yet!

Keith and I both sat with her for a while on ITU and Mr Tranter and Dr O'Connell both came back to see how she was doing. Later Dr Trounce came and said he was "very surprised at the findings and would have to go away and have another think". Later, Keith went home to relieve my parents of Oliver and I slept in Zoe's empty cubicle, safe in the knowledge that she was being continually watched and monitored by a nurse on ITU. I had a lovely sleep, then relaxed in a hot bath the next morning.

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We had made up our minds from Day 1 that one of us would be with, and watch over, Zoe day and night. Despite the emotional tie of never wanting to leave her side, there was also the practical side - no-one could tell when she would suddenly develop difficulty with her breathing, and despite constant reassurances from the staff that she would be closely monitored we felt that she should be actually watched continually. Obviously busy wards do not have the staff to do this. The saturation probe on her foot was constantly alarming when she moved, or if the probe fell off, and the staff respond time wasn't always instant - losing seconds could be vital.

Yet again I felt that we had to prove our case, and until they had witnessed an attack they would not worry. Hence, Keith or I were always with Zoe, 24 hours a day (unless she was on the ITU) and, if we left the room to go to the toilet, or have a meal, or make tea we always insisted that a member of staff stayed with her. The nurses were very good about this and never minded sitting with her for five or ten minutes.

Zoe had a good night on ITU and was transferred back to Nicholson Ward the following morning. The next investigation, a barium meal was scheduled for two days later on Thursday 12th January. Keith and I were both present for this which proved, yet again, normal. The barium was introduced into the stomach via the naso-gastric tube as our graphic descriptions to the radiographer of events following the introduction of liquid into Zoe's mouth were enough to dissuade him from doing this.

Following the normal findings on Zoe's stomach, naso-gastric feeding was once again re-introduced, and the drip in her arm was removed. The antibiotics had improved her cough and she really was quite bright and gave us lots of smiles. We were moved to a larger cubicle across the corridor which had a bed in an adjoining room which, at night, we dragged around next to Zoe's cot so that we could watch her. The room also had a television in which helped pass the time of day when Zoe was sleeping. It was now 14th January and my concern was growing over the length of time I had been off work.

Zoe had now been in hospital for over three weeks and we were nowhere near finding out what was wrong with her. She seemed stable enough at the moment, full of smiles, and not coughing too much. Her feeds were still given via the tube and we were trying to encourage the sucking reflex to return with the use of special exercises designed for babies who have forgotten how to suck. I decided that I must return to work. Keith would stay with Zoe, and my parents and Keith's mum would look after Oliver during my working hours. I could leave work if Zoe's condition changed and I could get to Brighton in 30 minutes if necessary. It was not an ideal situation, but I knew that life must go on.

So, on Monday 16th January I returned to work. It felt very strange but it was nice to be ‘normal’ once again. The two phones at work ring constantly and each time I heard the words, "Yes, I'll get her for you", my heart nearly stopped, but, thankfully it was never about Zoe. After the 10 hour shift I went home, changed and drove over to the Royal Alexandra Hospital to spend the night next to Zoe. The following day, Tuesday, was my day off which I spent with Zoe whilst she underwent a pH study. This involved inserting a special probe into Zoe's oesophagus - the end of the tube sitting just above the opening to her stomach.

The probe registered the acidity of the gullet to determine whether reflux of acid from the stomach was occurring or not. The probe was to remain in place for 24 hours. The next day I took an Annual Leave day as I wanted to be with Zoe when she travelled to Brighton General Hospital for a Magnetic Resonance Imaging (MRI) scan. Keith accompanied her in the ambulance and I followed in the car. Maggie, Zoe's primary nurse escorted her, and Zoe was heavily sedated with a drug given via the naso-gastric tube earlier. She was, once again, all ‘floppy’. None of us were allowed to be with her when she had the scan and I willed her not to have one of her episodes in this environment which was alien to us all. Luckily she didn't, and we all returned to the Alex several hours later.

Both the pH study and the MRI scan showed no abnormal result. Brighton were running out of ideas.

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By now Zoe had been moved to yet another cubicle further down the ward. Rain water had been leaking through the roof of the previous cubicle and now we were back to having a tiny cubicle just managing to house a cot, bed, sink, locker and chair. On the Thursday I returned to work at 8 am, finished at 6 pm changed, had a quick meal with my mum and dad and, as they were staying overnight, Dad quickly drove me over to Brighton to visit my daughter. While we were there Keith took the opportunity to go and have a bath.

Dad was sitting on the end of the bed reading a newspaper. Maggie, our nurse, came into the cubicle and she and I began chatting so she sat on the edge of the bed next to my dad. With an almighty crack the whole bed broke and they both fell together on to the floor! Staff came from all over the ward to see what all the noise was about, and Maggie kept slapping my dad's leg and roaring with laughter! Dad became quite a celebrity!

After work on the Friday I went straight over to Brighton to relieve Keith. Zoe was not so well. Her cough had returned with a vengeance, but she was still ‘chatty’ and smiled a lot. I was to be with Zoe until Sunday night when Keith returned with Oliver.

On Saturday I gave Zoe a lovely bath and massage and then dressed her in a little navy and white striped, short-legged, romper suit and little white socks. We had the most wonderful morning, Zoe and I, and what happened next remains my most perfect memory of her. I was lying on the slanting broken bed with Zoe sitting on my lower chest facing me. Every now and then I lifted my head and said, "Boo", whilst shaking my head from side to side. The more times I did this the louder she laughed, and every time she laughed, I laughed, until we were both loudly laughing our heads off. I was most embarrassed to see all the doctors on the ward round peering in the window as we were disturbing them!

Around lunch time our nurse for the day, Cheryl, came in and we discussed whether Zoe had oral thrush. We both felt that she had, and Cheryl went to get some medication prescribed for this. At 2 pm she returned with a tiny amount (probably about 0.5 mls - 1.0 ml) of nystatin suspension in a syringe. Zoe was sitting on my lap and Cheryl gently squirted the liquid into her mouth. Zoe stopped breathing immediately and turned navy blue. I remember shaking her and Cheryl telling me to lay her down on the bed.

I was keen to run and get help but Cheryl kept saying ,"No, she's fine, she’s coming back to us. Just leave her a minute". Zoe took a breath, then another and another and gradually her colour and breathing returned to normal. At last they had witnessed an episode which Cheryl then had to repeat to the doctors time and time again, but still they were none the wiser.

At midday the following day I had a very strange experience. I was sitting in the rocking chair whilst Zoe was sleeping in her cot and I was thinking about a friend of mine, Clare, whom I hadn't seen for about three months. At that exact moment she walked in the door! It was very odd, and for the first few minutes all I could say was, "I can't believe it!". It was lovely to see her, and we recounted some old times as we had trained together as nurses some 16 years previously. Keith's brother, Simon, and his girlfriend, Rachel, then arrived but, by now, Zoe had woken and was crying and I felt uneasy. I had the feeling that something was wrong as she was getting distressed for no apparent reason.

I then discovered that she had a dirty nappy, with diarrhoea, and the crying seemed to be associated with this so we thought maybe she had some wind. Paracetamol via the naso-gastric tube calmed her and she slept peacefully.

I returned to work on the Tuesday knowing that Zoe's condition was deteriorating. Great Ormond Street Hospital had already been mentioned to us and a bed had been booked for Zoe on Peter Pan Ward for the following Monday. Brighton could just not get to the bottom of her problem. I visited her after work and didn't want to leave her again, but I had to work the next day so needed to go home to get some rest. The following night when I visited she was even worse, and Keith was looking very tired having been up all night holding her hands. I reluctantly left the hospital at 9 pm and went home to bed. In the middle of the night I woke with a start. It was 3 am and I just knew that Zoe was in trouble. I thought I had heard her crying which was woken me up. I lay there for the rest of the night just waiting for the phone to ring but thankfully it didn't.

At 6 am I got up and rang Nicholson Ward - Zoe had had a very bad night with one episode in which she required oxygen and suction. When I asked what time this episode had occurred I was told, “3 o'clock”. I think it was when I put down the telephone that morning that I realised that we would probably lose her. She was just so poorly, and no one knew why. It was a terrible thought and I was completely powerless to do anything to help her.

I tried to pull myself together before I arrived at work that day, but it was no use, and I arrived in floods of tears. I stayed at work, needing to be occupied, knowing that Keith would ring me if I was needed. The one thought that I couldn't shake from my mind was what we were going to write on the flowers at her funeral.

At lunch time my good friend and colleague, Rhona, arranged with the other staff that she would take me over to Brighton to see Zoe. It was a complete surprise to me, and I was very grateful. Zoe was looking very sick and I asked the nurses in Brighton if she could be transferred straight to Great Ormond Street Hospital that day. Apparently that possibility had already been explored by the doctors but no beds were available at Great Ormond Street. It was terrible having to leave her in that condition but there was nothing I could have done if I'd have stayed. I had one more day, Friday, to work and then I was to spend all weekend at the hospital with Zoe before she was transferred to Great Ormond Street Hospital on Monday.

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When Oliver and I arrived at the hospital on Friday night Zoe was sleeping. Keith and I had a brief chat and Oliver had a quick look at his sister and they left for home. I found I was very nervous in Zoe's company now - I jumped whenever she coughed and watched her like a hawk. She was back inside a head-box because her cough and chest were so bad. Every time she cried she became blue and needed more oxygen. I just knew that something was about to happen and about 3.30 pm on that Saturday afternoon she began crying inconsolably.

I lifted the head-box to see her more clearly and as I did this she stopped breathing. I hit the panic button and no-one came (I hadn't kept my foot on it for long enough) so I ran off down the ward and barged into Sister's Office. She, and the person she had been talking to, came running back with me, and the Sister had to ‘bag’ Zoe several times before she started breathing again.

Gradually her breathing and colour returned to normal. Following this episode Sister thought it best that Zoe be transferred to the ITU. I felt like saying that this was exactly why we had been with her watching her closely 24 hours a day for the last five weeks. At last this hospital had witnessed an episode - just as we were leaving to go to Great Ormond Street Hospital!

The above episode was preceded by a naso-gastric feed which may, or may not have been connected with the events. It was decided that all feeding should be stopped for the time being.

Zoe remained stable on the ITU until the following day. After lunch I was sitting watching her sleeping. I was feeling very nervous as I had a feeling that yesterday’s events we about to be repeated, but the staff kept reassuring me, saying, "Just because it happened yesterday, it doesn't mean it will happen today". But I knew, beyond a doubt, that it would.

Around 5 pm Zoe started crying. She was beginning to sound strange again so I lifted the head box just as her breathing stopped again. There was only one nurse, Zoe and myself in the ITU. The nurse bleeped the SHO and started bagging Zoe and, when the phone rang I answered it and asked the SHO to come immediately. This time Zoe did not come straight back. She lay on the bed with her neck arched backwards, her eyes fixed and staring, struggling to breathe. The SHO didn't really know what to do and called the Registrar.

She came and called the Surgeons. I asked if they were thinking of doing an emergency tracheostomy to help her breathing but I was told that it was due to her ‘rigid abdomen’ that a surgical opinion was needed. I sat next to Zoe, holding her hand, whilst all the doctors were buzzing around. Aloud, I was pleading with her just to hang on until her daddy arrived. Keith was due at the hospital any minute. It was 5.30 pm I kept being asked if I wanted to wait outside but there was no way I was leaving my daughter if she was dying.

I talked and talked to Zoe as the nightmare continued. The Registrar ordered a nebulizer for her as she felt that she was having severe bronchospasm. Zoe’s terrified eyes continued to stare and she must have been, literally, frightened for her life. She tried and tried with all her might to carry on breathing. It was a terrible fight to watch. One nebulizer was given, and a slight improvement noted so another was given. Staff were arriving from all over the hospital to help and the Radiographer was also summoned.

It was now 5.45 pm and I was still stroking Zoe's blue / grey forehead and telling her that she was doing just fine. She was really struggling to breathe and I remember telling her that Daddy would be there any moment. The Radiographer, when he arrived, wanted an upright X-ray of Zoe's chest which involved her sitting up and leaning back on a foam triangle. I moved away from her side to allow the nurses to position her and I waited outside while the X-ray was taken. Keith arrived at this moment and I was just so relieved to see him.

I couldn't have beared for him not to have been there if she had died. When we both went back into the room Zoe was still propped up on the foam triangle and when she saw her father she gave the most enormous smile! It was just beautiful, and everyone in the room was laughing and crying. She was back! We held her and cuddled her, and Keith then asked what all the fuss had been about!

Once Zoe was settled I gathered my bags and left Keith in charge - he was doing the London run in the ambulance with Zoe the next morning. Saying goodbye to her was very difficult. I kept going back for one last look, not knowing if I would see her again.

I found where Keith had parked our car and sat in the driver's seat and cried. I cried with relief because she had not died, and with sadness because of the suffering I had just witnessed. I had fully expected her to die just then, told myself that she would, and now, suddenly, she was okay again. But for how long? How long before she does it all again, and will she pull through next time? If only she could hang on until the next day when she went to London maybe, just maybe, they would have the answers.

It was about 15 minutes before I could drive off, and now I had to function normally again - drive to Keith's mum's and pick up Oliver, then go on to Haywards Heath to my own parents. My dad was coming with me to London the following morning and Oliver would stay with his grandma. I collected Oliver, who was streaming with cold, and began driving the 24 miles to Haywards Heath. I had not long left Worthing when a red light began showing on the dashboard of the car. On stopping to read the handbook I discovered it was the brake fluid level that was low.

Not knowing if it was safe to continue driving I stopped at a country pub to use the phone. It was 10 pm and pitch black. Oliver had, due to the cold air, now developed croup and was barking like a seal in the back of the car! Whatever next, I wondered?! I eventually made it to my parents house about 11 pm having stopped at my brother's house on the way for him to check the car.

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The following morning Keith was going to ring me at my parents house when he was leaving for London so that Dad and I could also begin our journey to London. By 10 o'clock he hadn't rung me so I rang the ITU to see what was happening. The journey was apparently under discussion. Zoe, although stable overnight, was now considered too unfit to travel to Great Ormond Street Hospital so maybe the journey would have to be postponed a day or two.

A decision hadn't yet been reached (and this was why Keith hadn't rung me) but, as soon as it was I would be informed. I just couldn't believe that having waited so long to go to Great Ormond Street she, maybe now, was too ill to get there. Fifteen minutes later the nurse rang with some wonderful news - a medical team from Great Ormond Street were actually coming down to collect Zoe - they would probably ventilate her at Brighton so that she would have a safe journey back to London, and they had already left.

The relief I felt was tremendous. All the stops were being pulled out for our little girl, and, with all the sick children in the country, they were coming to get OUR daughter. I felt very privileged. I wanted to be with Zoe when the team arrived so Dad drove me back to Brighton, leaving Oliver with my mum.

When the Retrieval team arrived in Brighton the Anaesthetist, Graham, from Great Ormond Street did intubate and ventilate Zoe, and Keith, Dad and I waited behind screens in the Brighton ITU while this was done. Afterwards we were allowed to see her, and, for the first time in many weeks we could relax. She could now not stop breathing while she was on the ventilator, so, temporarily at least, she was safe.

Keith accompanied Zoe and the team in the ambulance up to London. It is not normal practice for relatives to go in the ambulances with the children, and it took some persuading for them to take Keith. Our argument was that we had not left Zoe alone in five weeks, and we were not leaving her now. One of us wanted to be with her, whatever happened. Reluctantly, they agreed. They sped up on a ‘blue light’ and completed the journey in just under an hour. Zoe was heavily sedated and ventilated so the journey went smoothly. Dad and I drove up, and, as we had left Brighton before the ambulance, we all arrived at Great Ormond Street at the same time. Within minutes of transferring Zoe over to her cot she was surrounded by a team of doctors headed by the Consultant Intensivist of the Paediatric Intensive Care Unit (PICU), Dr Robert Tasker.

He examined Zoe quickly, but thoroughly, and reeled off a series of investigations he wanted his team to carry out. He then spoke to Keith and myself and told us of a few possible conditions that could be causing Zoe's symptoms. He mentioned the Cytomegaly Virus, Mycoplasma infection and some other disorders which can be detected in the blood. He also asked us if anyone had told us that Zoe had an enlarged liver and spleen. No one had.

I was very impressed with Dr Tasker. He seemed extremely intelligent and had already summed up the situation and discovered something new. He was also very kind and friendly - asking about Worthing and telling us that he went to school in nearby Steyning.

Zoe was in a cubicle to the left of the nurses' station, and because she was ventilated she had a nurse with her continually. The ultra modern room was full of highly technical machinery, her heart and respiration rates, blood pressure and oxygen saturation were all constantly monitored and displayed on a screen above her cot. A computer beside her was for recording all her nursing notes.

The hospital organised a temporary bed for Keith that night in the basement of the hospital. Parents were not encouraged to sleep in with their children as it was felt that they needed their vital sleep. Keith had an appointment the following day with the Accommodation Officer who we hoped would help find us somewhere cheap to stay in London. Dad and I decided to leave for Haywards Heath about 9.30 pm that night.

There was still Oliver to consider, who, as yet hadn't spent a night away from home on his own, so I wanted to get back to him. Mum and he were waiting up when Dad and I finally got back late that night and they wanted to hear all about Zoe's journey and her new hospital. I felt confident in leaving Zoe that night as she was still ventilated and both Keith and I knew that she couldn't stop breathing all the time her airway was permanently maintained.

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Keith and I had planned to do shifts of a week at a time with Zoe in London for the remainder of my Annual Leave, but, after Keith saw the Accommodation Officer he then managed to find us all some family accommodation in a nearby house owned and run by a charity - the Sick Children's Trust. Rainbow House was a rambling eight bedroom, four storey house which helped to house as many families of sick children as possible. Oliver and I arrived there the following day and met some of our new house-mates. These were people from all sorts of walks of life with one common bond - a sick child. There was tremendous empathy in the house and an understanding that came from complete strangers. In the large kitchen which was in the basement, there was a poem on the wall. I couldn't read the words from beginning to end for many many weeks but when I did they made perfect sense...

Within these walls may we find strength
to meet the challenge at hand.
Lend support to each other
and overcome the demands.
We'll take each day as it comes
and do what needs to be done.
Even though this may mean
endless hours without the sun.
The waiting and the hoping,
the frustration and the tears
will perhaps be lessened
as will some of our fears.
Simply being together
will bring us comfort and rest.
Knowing somehow we'll get through this
will make us do our best.
For in the centre of all this
is a child who needs us near
who needs to be held in our arms
and be told he / she is brave and dear.
When this time of our lives is over
and we recall what we shared,
we'll remember being together,
love, and people who cared.
Yes, within these walls
that were built with love,
we found friendship, courage, and peace.
We continue to hope and pray that soon
our child's suffering will cease.
Our days will be filled once again
with sunshine from above.
And hold in our hearts
all that we learned
within this house of love.

One couple we made great friends with were Ros and Bill. They had already been at Rainbow House for a few days when we arrived and they made us feel very welcome. They lived in Kent and had come to London as their seven year old daughter, Sarah, had a swelling on the side of her face and neck. Sarah was undergoing various investigations, and, to save travelling to London from Kent several times a week they stayed in Rainbow House.

The house itself was wonderfully decorated and furnished. Much of the decor had been provided by large organisations such as Marks and Spencers or Laura Ashley. The house had a playroom which was well equipped with donated toys and Oliver immediately made friends with Sarah and they amused themselves in the playroom. Soon after my arrival at the house I met Rose Lucas who was responsible for allocating the bedrooms and for the general running of the house. She was a ex-nurse who was employed as House Manager by the charity and she had her office on the ground floor of the house so she was a friendly face most mornings at our breakfast table.

Rose proved to be a valuable friend during our stay in London - always showing concern for us, and also for Zoe's welfare. She frequently left us her home phone number so we could contact her at weekends if there was anything she could do to help us. We never rang her, but it was a lovely thought.


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Type 2 Gaucher Disease
Neuronopathic Gaucher Disease

© Copyright 2000 Catherine North