Twinkle Twinkle Little Star

Twinkle Twinkle Little Star - Continued

FEBRUARY

The night of Wednesday 1st February was the first night that Keith, Oliver and I had spent together since 23rd December. As Zoe was still ventilated, and was being continually watched by the nurses, we had decided to spend the days with her and the nights at Rainbow House. This way some resemblance of family life was maintained for Oliver, as he had only seen one or the other of us for the last six weeks. We were given a pager by the Sick Children's Trust so the PICU staff could bleep us if we were needed. This allowed us slightly more freedom in the weeks to come. On Zoe's brighter days one of us could go to the supermarket and stock up on our food supplies without continually wondering if we were needed at the hospital, or we could take Oliver over the road to the park.

Soon after Zoe had arrived at Great Ormond Street she was found to be anaemic so she was given a blood transfusion. An organism called ‘mycoplasma’ was isolated in her blood and we were told that this could account for her cough, anaemia, and enlarged liver and spleen. Antibiotics were commenced. Events seemed to be moving fast now that we were in London, and, if this micro-organism could account for all of the above then we thought we only had her neck extension to explain. Everything was looking quite hopeful! The ENT doctors came to see Zoe and agreed to repeat the bronchoscopy on the Monday (in four days time). We felt quite optimistic.

Zoe's sedation was gradually lightened and on her third day in PICU she was taken off the ventilator. She was awake and smiling, although still coughing, but all we had to wait for (we thought) was the correct antibiotics to work. As she was now off the ventilator she was moved to a three bedded bay of the unit, and her cot was now situated to the right of the nurses’ station just inside the entrance. Keith, Oliver and I arrived on the Unit around 9 am every morning and Keith and I sat by Zoe's cot until 6 or 7 pm every night. Pamela, the Play Specialist for the PICU was wonderful at entertaining Oliver for us.

She took him shopping to the local supermarket to buy ingredients, and spent many an afternoon with him in the small PICU kitchen making cakes or playdough. Much to everyones’ amusement Pamela ‘forgot’ the cakes that were cooking one afternoon and the resulting smoke set off the fire-alarms throughout the hospital! She was constantly reminded of this disaster, and, consequently, whenever the fire alarms went off the chorus went up, "Pam's been cooking again!".

One afternoon Pam gave Oliver a huge piece of paper, about six foot wide by 10 foot long, and some brightly coloured paints. She asked him to paint a picture and, being only three years old Oliver haphazardly coloured the paper bright red, yellow, and blue and named it ‘fireworks’. Nevertheless the painting was labelled with Oliver's name and age and put up on the wall in one of the corridors. Oliver was very proud and showed all our visitors his picture.

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Considering how far away from home we were we didn't expect to have many visitors. How wrong we were! Most days we were lucky enough to see someone that we knew and that was a real tonic for us. Word got around of where we were now living and the post also started arriving every day for us. There were cards, letters and flowers for Keith and I from people that were thinking of us, and parcels of toys and books for Oliver. Everyone’s kindness was overwhelming.

Oliver was more than a little perturbed over our new abode and he kept asking when we would be going back to "our other house with the garden by the sea", and, "Why have we now brought this house, Mummy?". He also missed his own toys. Leaving home so soon after Christmas meant that he had a lot of new toys back home that he hadn't had a chance to play with. It was a shame but there was no alternative if we were all to be together.

As we were now living in London, and Oliver had never seen London before, one afternoon Keith took him to see some of the sights. The pager ensured that I could summon Keith back to the hospital at any time and he and Oliver had a lovely afternoon travelling on the Underground and seeing Buckingham Palace. Our good friend, Rhona, had previously told Oliver that he must "be sure to knock on the Queen's gates to see if she is home", so Oliver insisted on walking the length of The Mall that cold afternoon in February to do what he had been told!

While Keith and Oliver were away from the hospital that afternoon Zoe was visited by one of the Neurologists, Dr Jane Collins, and her Registrar, Penny. It was really a preliminary visit as everything depended on what was found on Monday’s bronchoscopy. If the bronchoscopy showed a problem then we had our answer, if it didn't, then Zoe's problem could be neurological. Dr Collins had come to say hello and read Zoe's notes so she would be acquainted with the case should her help be needed. Zoe had had several apnoeic attacks since coming off the ventilator, usually whilst coughing or crying.

She chose the moment that I was talking to Dr Collins at the cot side to have another mild one. She began to cry. I was watching her intently, and also trying to concentrate on recounting her history when I saw her colour begin to change to a dusky blue. I called the nurse, who didn't hear me, and Dr Collins loudly then called, "Nurse, Nurse, can you come? Quickly!". She and I stood back whilst the nurse quickly bagged Zoe and the episode passed.

At the end of our conversation Dr Collins and I said our goodbyes and she said she would only be seeing us again if the bronchoscopy was normal. I said goodbye confident that I wouldn't be seeing her again.

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Later on that day Zoe had an ultrasound scan of her brain and this was yet another test which was normal. Keith and I were absolutely sure that there was nothing wrong with our daughter's brain. We felt elated that each time a test was ‘normal’ and our theory was supported. To us, Zoe seemed too intelligent for there to be a problem in her head - her eyes saw, followed and recognised us, she smiled, chuckled and talked to us - she seemed, mentally, at that time, just as Oliver had been at that age.

Soon after the mycoplasma organism was isolated in Zoe's blood we were told that Keith, Oliver and I would also need to be tested to see if we were infected aswell. Oliver was very brave, having his blood test to help his little sister. All our results were clear.

Our first weekend at Great Ormond Street Hospital should have been Zoe's Christening weekend. Before we had left for London I had telephoned Father Woods to explain our predicament and the Christening had been postponed until further notice. Keith and I were both brought up with Church of England backgrounds but neither of us are particularly religious, and we never go to church. Nevertheless, I was very keen, initially, that Zoe should be baptised. This enthusiasm, I think, came about for three reasons : firstly, pressure to do the ‘right’ thing ; secondly, if the child then decided as an adult to actively partake in the religion then baptism had already occurred ; and thirdly each child in the family should be treated equally (Oliver had been baptised, and therefore, so should Zoe).

Keith was not so bothered but agreed that, if I felt strongly enough about it, I should go ahead and organise it, which I had. Father Woods told us he was very sorry to hear of the situation that we were in, and I promised that I would keep him informed of any further events. I do remember that it crossed my mind around this time that it might not be Zoe's baptism that we would be discussing, but her funeral. I kept such thoughts to myself.

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In the cot next to Zoe in the PICU was a small coloured baby boy who was ventilated. His name was Peter and he had been born several weeks prematurely. His parents lived a long way away and could only visit occasionally. Peter had been in the PICU for many weeks and the staff knew him well. His condition lately had been causing concern and he seemed to be wheezy a lot of the time. There was, opposite Zoe, a little three year old girl called Chelsea. She was also ventilated as she had head injuries from falling from her top bunk bed at home. Chelsea's mum stayed with her every day - they also lived a fair distance away, and her father had to work so he could only visit at weekends. Chelsea's sister was being cared for by her grandmother.

Hearing of other peoples' situations made me realise how lucky we were. We were all still together with Zoe and I had another two weeks Annual Leave due to me, which would take us up to 20th February. A lot could happen in two weeks, as I already knew, so I was quite optimistic that Zoe might be diagnosed and treatment begun in time for me to return to work. I felt that if I knew WHAT was wrong and what treatment would be involved then we could plan for, and deal with, whatever long-term problems came our way. I could then return to work in Worthing, leaving Keith and Oliver with Zoe, and I would go up to London for my days off until Zoe was discharged. It was the not knowing what was wrong that was the hardest part of all.

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Around this time we met Tracy whose daughter Victoria had had a brain haemorrhage. Victoria was eight years old and one of identical triplets. Tracey had said goodnight to her daughter one night at home and had gone upstairs half an hour later to investigate a strange noise. She found Victoria fitting and vomiting. They had been sent to Great Ormond Street Hospital from their local hospital in Luton where Victoria had suffered a cardiac arrest. Victoria was also ventilated and had been at Great Ormond Street a few days longer than Zoe. Keith and I often chatted with Tracey, and her partner Mark. The different ages of our children was irrelevant - we were both in the same boat of not knowing if our children would live or die.

Simon and Rachel came up with Peg on that first Saturday. On the Sunday my mum and dad came up to visit us and Keith had managed to obtain two tickets for an open-top bus ride around London so he and Oliver set off around 11 am and had a lovely few hours in London.

The next day, Monday, Zoe went to the operating theatre and had a Micro-laryngoscopy and Bronchoscopy. It was normal. To our dismay Zoe was now under the care of the Neurological team. I think we sensed that this could be the worst possible scenario.

Within Great Ormond Street Hospital is a Play Centre which accommodates both patients and their relatives who are residing at the hospital for long periods. We were very lucky in the fact that Oliver was able to attend the Play Centre every day between 9.30 am and 5 pm. He was able to play, paint, dress up, make pictures, read, listen or watch entertainers all under supervision, which allowed Keith and I to concentrate on Zoe. We sat next to her all day every day, stroking her, talking to her, washing her, feeding her, or just sitting quietly whilst she slept.

She had neurological test after neurological test, including EEG's, nerve / muscle conduction tests and many others most of which we did not understand, but all of which, more importantly, were normal. She continued to be naso-gastrically fed as she still couldn't swallow, although she was managing to swallow her own saliva.

Rhona came to visit us on the Tuesday. She stayed and kept us company all day, and towards evening we took her back to Rainbow House. Rhona and I talked about the possibility of Zoe having a neurological condition and she, like us, felt that she didn't. It felt very unreal showing Rhona around the house in which we were now living, and I remember commenting on how I felt that we'd been "plucked out of a normal life and put into this strange world and that there was no indication when, if ever, we would return to normal".

The following day, Wednesday, I woke with a streaming cold and Oliver was vomiting so we stayed at Rainbow House for the day. My brother, Richard, and his wife, Hilary, came up from Sussex to visit Zoe, and Keith bought them back to the house at lunch time to see Oliver and I. They have never told me but I gather that their visit to London upset them deeply.

You cannot imagine the magnitude of children’s suffering until you enter a place such as Great Ormond Street Hospital and see it for yourself. Keith and I lived within this environment for six weeks. Sometimes we would sit silently, deep in thought in the Parents’ Room alongside other parents who were doing the same. It was not an uncomfortable silence, but an understood silence. There was just absolutely nothing to say.

There was one couple that we would frequently sit beside in the early days, each of us deep in thought. They were an older couple - we never even knew their names. One day they were there, the next they were not, and, when I asked the nurses where they were I was told that their only child, Cherie, had died during in the night. She was three years old. It was an unspoken fear of all of ours, wondering who would be next.

Oliver and I stayed away from Zoe the following day aswell. We didn't want to pass any bugs on to her but it was very frustrating being just around the corner from her and not be able to see her. Keith came back from the hospital and said that she had had a good day and that he had managed to cuddle her out of the cot for at least two hours which was excellent news.

As she was no longer ventilated she did not need to be on the PICU, although everyone agreed (finally) that she did need constant supervision due to her sudden episodes. It was decided that she could be moved to a ward as long as she was ‘specialed’ (a Staff Nurse was allocated to care for Zoe for each shift) and so we met Lucy.

It was a Friday morning and Keith, Oliver and I arrived on Churchill Ward to visit Zoe. Lucy was on the day shift (8 am to 8 pm) and was responsible for specialing our daughter that day. Zoe was lying sleeping peacefully in her cot on an apnoea mattress with a saturation monitor probe attached to her foot. She was also in the head box as her oxygen levels had been dropping overnight, and, inspite of my staying away it seemed she had somehow begun to develop the symptoms of a cold.

Lucy was a lovely girl - very easy to get on with and very good at her job. This particular Friday Dr Collins and her team were just beginning their ward round. Dr Collins came into Zoe's room and said that she would finish the ward round and then come back and have a chat with us. This indicated to me that she had something important to say.

We noted that Zoe's condition had deteriorated, once again, overnight and her cough was a lot worse. At 9.30 am Keith took Oliver to the Play Centre and later Dr Collins returned and, leaving her team behind she asked us to follow her down the corridor to an empty Staff Room. Lucy came with us and we all sat in a circle waiting to hear what Dr Collins had to say. She was very honest with us and admitted that every neurological test to date had proved normal but, despite this, she had a very strong feeling that there was something seriously wrong with our daughter. She had no grounds to think this, just her instinct, but she said she thought it, "very unlikely that we would ever be taking Zoe home".

She added, "I think you know what I mean by that, Mr and Mrs North". She went on to explain that she felt the problem lay in Zoe's brain stem where all the vital functions of the body (such as breathing) are controlled. She said that she hoped she was proved wrong, but if she was right, she emphasised that there could be nothing that anyone could do for Zoe. She added that this ‘chat’ meant that they were not giving up on Zoe - she would continue to be resuscitated until a definite diagnosis had been reached. And if her present condition deteriorated further then she would be returned to the PICU later that day.

Keith and I were pretty shocked by this news, especially as we had no positive facts to grasp to make it all the more true. Keith sat white-faced crossing and uncrossing his legs during the conversation, and I sat very still, conscious of how I was acting and knowing that all eyes were on us. I fleetingly thought of all the similar conversations I had sat in on in my nursing role, and that now, finally, I knew how the patients and their relatives felt being dealt such a cruel blow.

Don't get me wrong, I was pleased that Dr Collins was being honest with us, but all the time that no-one in authority spells out the possibility of death to you then you deny that it can happen simply because no one has told you. Now that we had been told we suddenly seemed to think that Zoe's death would be imminent, although her actual condition itself hadn't changed, and she was still the same as she'd been over the last six weeks.

We didn't cry until Dr Collins and the others had left the room and we were alone. Both of us immediately thought of Oliver and what we would tell him about the sister her adored so much. We decided to try and broach the subject with him that day, feeling that it was better that he was prepared should anything happen to Zoe soon.

We went back to Zoe's room, but, try as I might I just couldn't stop the tears. Poor Lucy, I had only just met her and I couldn't stop crying! I remember asking her if she knew of any books that explained death to children and she promised to find out for us. My mind went back to the time our friend Gill's first husband, Mike, died of leukaemia. Gill was left with three year old Amy and six year old Tim. Her explanation to Amy was that, "Daddy has gone to the stars", and several weeks later, aboard a flight to France Amy had the passengers in tears when she looked out of the aeroplane window, saw the stars, and loudly told everyone that her Daddy now lived there. Thus, that morning the concept of Zoe's star was born in our minds.

We decided to collect Oliver from the Play Centre at lunch time and all go back to Rainbow House for some lunch and have a break from the hospital. There we tried to talk to Oliver, saying that Zoe might not be returning home with us when we eventually went, as, she might be going to join ‘Pops’ in the stars. (Keith's dad had died two years previously and Oliver remembered him and recognised the fact that he was no longer around.) He started crying and shouting, "No No NO, Zoe IS coming home with us. She is". He wouldn't hear any of it, and it seemed such a shame to continue upsetting him with information that wasn't absolutely definite. After all, no test had proved anything - Zoe may still be diagnosed, treated, be well, and continue to grow up. No one knew anything for sure, so we decided not to mention the subject again to Oliver until we knew for certain.

The rest of that day was very emotional. It had now been spelt out to us that losing Zoe was a real possibility - no one had said it before, it had been in our minds but no one had told us,and now that the doctors agreed, this confirmed our worst fears. We wanted so much to disbelieve Dr Collins, after all, she had no definite proof.

My over riding concern was that everyone would now not be so alert with Zoe, and, that despite Dr Collins' reassurances Zoe would now be considered a hopeless case. How wrong I was! Over the next few days it seemed that all the stops were pulled out and I think that everyone was of the opinion that anything was worth a try.

Continuous naso-gastric feeding was commenced to see if this improved Zoe's cough. In the past a bolus feed via the naso-gastric tube had usually preceded a breathing problem. Maybe, I thought, because her stomach was so full of milk when she coughed, some came up from her stomach and entered her lungs causing her to stop breathing? It was a possibility that I felt was worth considering.

Three infusions of a drug called Sandoglobulin were given over the next three days. This is a preparation which contains antibodies to viruses, and it was thought that this might help Zoe if she had some sort of auto-immune deficiency.

Zoe was still very poorly although her condition had not worsened. On the Saturday (February 11th) she momentarily stopped breathing several times and required bagging. During one of these episodes both Lucy and I noticed some milk trickling out of her nose. It seemed that my theory could possibly be true - milk was refluxing up from her stomach and causing her to stop breathing. The doctors were informed and the possibility of jejunal feeding was mentioned. This would involve passing a longer, thinner tube down through her stomach and duodenum and into the next part of the digestive tract, the jejunum.

It would mean that her stomach would remain empty and the milk would, therefore, be absorbed from her small intestine. Keith and I were in favour of trying anything, so Lucy passed the tube slowly into Zoe's jejunum. An X-ray established that the end of the tube was sitting in the correct place and milk feeds were started the following day, Sunday.

It was also noted that Zoe always seemed to be rigid whenever she was experiencing difficulty in breathing. The possibility of her fitting was also discussed and the doctors decided to try an anti-convulsant drug to see if this helped. The drug, called Epilim, was started on the Saturday and was given in liquid form via the naso-gastric tube. Poor Zoe now had two tubes sticking out of one of her nostrils, a naso-gastric tube and a jejunal tube, and she also needed continuous oxygen which was also given via nasal cannulae. All of the tubes didn't bother her at all and she never tried to pull them out.

By Sunday afternoon Zoe was bright, alert, and smiling non-stop! She was miraculously improved, but what was it due to - the epilim, the jejunal feeding, or the sandoglobulin? Or had the cold just got better? I didn't really care what had caused the improvement, I was just pleased that she still had the ability to ‘pick-up’ and improve despite the doom and gloom that we had heard just two days previously. I was very keen for Sunday to be over and to see Dr Collins’s face on Monday morning when she saw our daughter. She would then realise that she had got it all wrong. Of course she had never seen the ‘well’ Zoe, and when she did she wouldn't think the worst anymore.

This was wishful thinking on my part. I did not want to believe that Zoe would die. I knew that she was seriously ill and that she would probably need a major operation (such as a tracheostomy) and probably 24 hour a day care for the rest of her life, but, at this stage I was convinced that she would live and we would adapt our lives accordingly. After all, there seems to be a treatment for everything these days - why should my daughter’s illness be any different?

That night (Sunday) Zoe was to have an overnight investigation known as a Sleep Study. Basically, it was to see if, whilst she was asleep, she forgot to breathe. She was to be taken to another part of the hospital for this, and while I bathed and put Oliver to bed at Rainbow House, Keith accompanied Zoe to her new cot and new nurses. I was concerned that she was, yet again, going to the unknown. The nurses didn't know her and she didn't know them. Would they watch her so carefully? Did she now look so well that she was deemed to be out of danger? I worried but said nothing, and just hoped that nothing untoward would happen overnight.

Keith and I had gone to bed at Rainbow House about 11 pm that night. At 3 am I was suddenly woken by our pager urgently bleeping. My heart was racing as I tore down the two flights of stairs to the telephone in the kitchen. Keith followed me, and all I could say on the way down the stairs was, "I knew they wouldn't watch her - I just knew it!". I was shaking all over when I finally got through to the Sleep Study Unit on the phone and I tried to make the Staff Nurse understand me. "I'm Zoe's mum. What is wrong?". I kept repeating it but no-one seemed to know. According to them Zoe was sleeping soundly. It turned out that the batteries in our pager were running low and so the alarm had been a warning to us to replace the batteries! Needless to say we didn't get any more sleep that night!

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A new family had moved into Rainbow House a few days before. They were Karen, Tony and their three year old daughter, Emma. Emma was a very pretty blonde, curly haired girl with a lovely smile. She and Oliver played well together. Emma's younger sister, Kendal, was a patient on the Cardiac Wing at Great Ormond Street Hospital.

One evening Keith and I were cooking our meal downstairs in the kitchen and Oliver and Emma were playing in the playroom, the next floor up. Oliver called downstairs that her wanted a ‘wee’, and I replied, "You know where it is, go on up". The toilet was up a further flight of stairs. We assumed that he had gone up, used the toilet, come down and carried on playing. He hadn't. Later, urgent cries of "Mummy, help!" came downstairs. I ran upstairs, but the playroom was empty, the shouting was coming from further up.

As I mounted the bottom step I could see rivers of water trickling down from the top. When I reached the toilet the sounds of running water and screaming was deafening. My shouting added to the din! Emma was sitting on the floor in inches of water, and Oliver was trying to walk out the door but kept slipping over. Both were soaking wet. Apparently they had both had a ‘wee’ then tried to wash their hands. Not being able to find the plug, they had used toilet paper to block the plughole and then turned the taps full on and been unable to turn them off! Water was cascading over the top of the sink and out the door and the whole scene was quite a picture! The rest of our evening was spent mopping up and trying to dry the carpets before Rose came in the next morning!

Zoe had now been in hospital for seven weeks and two days and we had all been in London with her for two weeks. Our home seemed very far away and part of another life altogether.

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Following Zoe's excellent day on the Sunday, by the Monday she wasn't well again. She smiled a lot and was happy, but she needed bagging at least six times throughout the day. A repeat EEG was normal so the Epilim was discontinued. The Registrar, Jean-Pierre, mentioned that one of Zoe's kidneys felt enlarged and that, possibly, there was a mass on it. Nothing surprised me anymore - time had taught me not to worry about anything until it had been proven. Whereas at Brighton, during the bronchoscopy I was busy working everything out in my mind about the tracheostomy equipment in the house etc.

I now adopted a ‘wait and see’ policy. An urgent ultra-sound was organised and Lucy and I accompanied Zoe to the X-ray Department and we watched the scan. Luckily Zoe didn't stop breathing in the department or the corridors. It was my nightmare that we would have to stop and bag her in a public place with everyone watching, but thankfully the expedition was completed uneventfully. The ultrasound was normal. There was no mass.

The next day we had three lots of visitors. Zoe's condition had improved and she was out of her cot for most of the day. Our first visitors were our friend Kate and her daughter, Victoria, who had travelled up on the train from Worthing. Oliver and Victoria had been born two days apart in the same hospital so Kate and I met in the Maternity Ward and remained in touch (although we knew of each other before this as our husbands' had worked together). It was a lovely surprise to see them both and we spent a couple of hours catching up on all the news and amusing Zoe.

I was taking very seriously the ‘milk in the airways’ theory and I decided that I would try and keep Zoe upright all day to see if this reduced the number of episodes that she had. I sat, or walked around with Zoe, her chest up against my chest all day and her coughing dramatically ceased. I really thought we were beginning to get somewhere.

Our next visitor was Karen, our friend from Burgess Hill. She had also travelled up on the train and we had another long chat. Around 3 pm my friends, Rhona and Jen, from work arrived, and Karen left to catch her train home. Rhona and Jen told me all the news - it was good to hear about life at the hospital, even if I wasn't a part of it, temporarily. They brought with them so many good wishes from the staff and patients, it seemed that everyone was thinking of us back in Worthing.

While Rhona and Jen were with us Dr Collins and her team came to see us on the ward round. Dr Collins agreed that Zoe was, indeed, a different girl to the one that she'd seen the previous Friday. She wanted a particular test, called a Tensilon Test, repeated as she wanted to see the results for herself. This test indicates whether or not the patient has a condition known as Myasthenia Gravis - a disease which is characterised by weakening muscles, difficulty in swallowing, coughing, double vision and drooping of the eyelids. The test involves intravenously injecting a drug and watching to see if any improvement occurs in the patient. The test was once again, negative.

Now that Zoe's condition had improved Dr Collins wanted the other investigations to continue. She wanted another lumbar puncture performed and another brain scan to see if there were any changes from the previous one. As she felt that the problem was probably progressive there was no time to lose - the testing must begin again in earnest. Time was running out.

Soon after Dr Collins saw us we were visited by two clowns who tour the hospital weekly and cheer up all the children (and adults!) with their amusing antics. Their names were Dr Ki-Ku and Dr Leonardo and they were extremely funny. They captured Oliver's attention with their bag of tools and made him a balloon sausage dog. It was a very entertaining five minutes!

Rhona and Jen came back to Rainbow House with us that evening. Before we left Zoe we asked Lucy to raise the head of her cot by 45 degrees so that even when she was laying down she was still fairly upright.

Back at the house we ordered a take-away pizza which was duly delivered half an hour later and quickly devoured. Rhona and Jen met our housemates, Ros and Bill. Sarah, their daughter had, by now, been diagnosed following a lymph node biopsy as having Acute Lymphoblastic Leukaemia and was a patient on Robin Ward.

Before my chums left us that night they gave us an envelope, only to be opened after their departure. It contained a card full of messages from all our friends at Worthing Hospital and a wad of money. Living in London was expensive - for convenience we had eaten out a couple of times. It wasn't a case of, "Let's get dressed up and have a nice meal out in a London restaurant". It was more a case of leaving the hospital, drained and exhausted, with a tired Oliver in tow, and not being able to face the thought of getting back to the house to start cooking. So we would pop into the Pasta House on the way and eat a quick meal. We also still had our house to run back in Worthing, with our mortgage and bills to pay, so the money would come in very useful and we were very grateful.

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The following day, Wednesday 15th February, was an excellent day for Zoe. She had been referred to the Gastro-enterology team headed by Consultant Surgeon, Mr Pierro. He came that afternoon and examined Zoe and agreed that gastric reflux was, indeed, a possibility, and could be causing Zoe's symptoms. I asked him if severe reflux could hyper-extend the neck, as in Zoe's case, and he said that it could, he had seen it before in other children.

I was getting more and more hopeful. Mr Pierro stressed to us that reflux might only be a small part of Zoe's problem, but, if it was proven then he was prepared to perform an operation on her to stop it occurring. He explained that he was going on holiday for one week and would leave the investigating to his Registrar. Zoe would need another pH study, and if this indicated reflux then Mr Pierro would operate on her on the Wednesday of his return. This would be the 1st March.

We had Zoe out of her cot, and upright, all day and she didn't require bagging at all, or cough much. On the rollercoaster of hope we were at a high point. We were finally getting on top of it! It was a happy day, thinking that a simple idea such as keeping her upright could make her so much better, and that it all could be due to reflux which could be easily dealt with. I spent that evening on the phone at Rainbow House telling all our callers that Zoe was so much better and that we were finally on the UP.

Our friends Roy and Col came up to see us that day, bringing Katie and Peg. Roy took some lovely photos of Keith and I with Zoe.

We came crashing down to earth with a bang the following day. We had arrived on Churchill Ward around 9.30 am and said "Good morning" to Zoe who was lying awake in her cot (at 45 degrees) looking around. She gave me the most beautiful beaming smile, and Lucy told us that she had had an excellent night. My mum and dad were due up that day and I was pleased that they would see her looking so well.

Lucy popped across the corridor to get something and I picked Zoe up out of her cot. Oliver came over and said "Good morning” to his sister. Suddenly Zoe gave a little cough and she was gone. Completely lifeless in my arms, and that horrible horrible blue colour. I threw her back on the bed and shouted for Lucy who came immediately. Zoe was not breathing and had no cardiac output. Keith and I then stood back and witnessed our own daughter's ‘Crash Call’. Suddenly the room was full of doctors and nurses and, as the Anaesthetist was about to intubate Zoe we were ushered into the nurses office across the corridor. After a few silent minutes we heard Zoe crying. They had got her back!

We were asked if we wanted to see Zoe, which, of course, we did, and she was struggling to breathe just as she had done at Brighton. The team were deciding whether or not she should be ventilated as they said she was now ‘holding her own’, but I loudly insisted that this was not ‘her’. This was not how she should be - she was still not quite right. The urgent blood gas results convinced them that this, indeed, was true, and they agreed to ventilate her. We were again ushered away while this was being done. Keith took Oliver down to the Play Centre and met my parents in the lift on his way back up.

A nurse kept returning to us to inform us of Zoe's condition and apparently during the intubation Zoe had suffered another cardiac arrest. At one point, the Anaesthetist reported, the bronchus was completely obstructed and the tube could only be inserted into her lungs when the blockage cleared, which it did spontaneously a few seconds later.

Once Zoe was ventilated we were all allowed to see her quickly before she was taken to the PICU again. We stayed on Churchill Ward and voluntarily helped to clear up the room. There were suction tube wrappers and papers everywhere which had all been thrown down in the panic. I couldn't believe that we were helping to clear up after our daughter's cardiac arrest but, at least it kept us busy until we could see her again.

We then had a cup of tea and a chat with the staff. Lucy had taken Zoe to the PICU and had not yet returned, but Steve, the Senior Staff Nurse, and Tess, a Staff Nurse from New Zealand stayed and talked to us, largely recounting the events of the last hour. Then they rang through to PICU and we were allowed to go over.

Zoe was off the ventilator when we arrived and breathing well. She had some nasal cannulae giving her oxygen and a ‘drip’ in her foot giving her fluids. She was very poorly now and her chest was sounding very ‘bubbly’ again. The PICU was very short-staffed that day so Lucy had volunteered to stay there and care for Zoe (which was very brave of her as she wasn't ITU trained, but all the appropriate staff were nearby should she need them).

Dr Mok, one of the Consultant Intensivists, came over to talk to Keith and I soon after we arrived on the Unit. She stressed to us that Zoe's lungs were now in very very poor shape. She showed us Zoe's chest X-ray which she said was a complete ‘white-out’. This could be due to a variety of conditions, she explained, such as aspiration of milk into the lungs, pulmonary oedema, sudden infection or heart failure. As no-one knew which condition Zoe had now developed Dr Mok said that she was treating her for all of them. She was having intravenous antibiotics, diuretics, and nothing further orally until her condition improved. She also explained to us her views on this mornings events, although she was not able to give us reasons why the events occurred. She felt that, for whatever reason, Zoe's airway went into spasm, closing it completely. As no oxygen was, therefore, getting into her lungs, neither was her blood being oxygenated, or her organs, hence that horrible blue colour. Her heart suffered, due to the lack of oxygen, and slowed and slowed until it eventually stopped. When Zoe's heart temporarily stopped and she had, effectively, died, then all the muscles in her body relaxed, including the airway - which then allowed Zoe to start breathing again and, therefore, be resuscitated.

It was too much to take in all at once. I don't think we fully understood all this information for several days. All we really knew was that she was now very ill again and all the previous hopes had been abandoned.

I began to think about my imminent return to work. This was my last week of Annual Leave for the year and I was due back at work in three days time. The last thing on earth I could envisage myself doing was working efficiently. I decided that I must ask if there was anything that could be done for me - going without pay was out of the question as we had no savings to pay the mortgage, but I knew I would not be safe to return to work. I went down to the payphones in the main entrance of the hospital and rang Clare, the Sister of the ward where I work. She assured me that I shouldn't worry - she, my Nurse Manager, Angela Bailey, and the Clinical Director of Medicine, Dr Bull, were sorting everything out. I hated asking to be off work, but under the present circumstances I felt that I had no choice. I hoped everyone understood.

Keith and I were allowed to have Zoe out of her cot that evening. We took turns to cuddle her amid all the wires and tubes. She was attached to a heart monitor, had a drip in her foot, the oxygen saturation probe on her other foot, the naso-gastric and naso-jejunal tubes coming from her nose, and the nasal oxygen cannulae going into her nose. Getting her out of the cot was a very complicated business and she showed no response when we finally had her in our arms. She looked, and probably felt, very very ill.

The following day, Friday, Zoe's chest was slightly better. She was still too ill for any smiles, she slept a lot and looked around for short periods when she was awake. Two more of our friends from my work visited us that day, Jane and Lydia. They were in London for a Study Day and called in on us on their way home. Their stay was brief but it was lovely to see them both. Soon after they left us another friend of ours, Pip, arrived. She lives in Bromley and we hadn't seen her since Christmas when she came to our house to meet Zoe for the first time. I had been to school with Pip many years previously and although we had always kept in touch with each other, we hadn't actually seen each other much.

This particular evening we were waiting for Zoe to have another brain scan. As the Scanner was fully booked we had to wait for a gap and she would be slotted in as an emergency. We collected Oliver from the Play Centre, and, by 6.30 pm we had run out of ideas for entertaining him. There was still no news of the time of Zoe's scan so Pip and I decided to take Oliver back to Rainbow House and start preparing the dinner. Keith remained with Zoe. We knew that she would be sedated and ventilated for the scan and that, afterwards, while she was still sleepy, the doctors would perform another lumbar puncture. One of the theories currently under discussion was whether the mycoplasma organism had entered Zoe's cerebro-spinal fluid (CSF) and was causing some of her symptoms.

Keith returned to Rainbow House an hour later and said that Zoe had just begun to be scanned when he had left, so we quickly ate dinner and Pip kindly offered to mind Oliver while Keith and I went back to the hospital. When we got there Zoe had just returned from her scan and was heavily sedated and ventilated. The room was once again filled with the sounds of the machinery that was breathing for her. We were eager to know the results of the scan as soon as possible, and, no sooner had we asked - the doctors came and told us that it was once again "all normal!". We were elated once again. Her brain WAS normal, just as we had thought. But then what could it be that was causing such severe symptoms? We opted for the mycoplasma in the CSF, or a problem with her respiratory tract. I left Keith with Zoe, assisting with positioning her for her lumbar puncture, and went back to relieve Pip of Oliver. It was getting late and she had to get back to Bromley, so I ordered her a taxi and arranged to see her the following week.

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On the Saturday (February 18th) we arrived on PICU around 9 am and we were ushered out again because of the Consultants ward round. A team of Intensive Care doctors toured the Unit twice a day, morning and evening, and saw and discussed every child. No relatives were allowed to be present whilst the doctors were discussing their child. This is due to the fact that many conditions may be discussed at the bedside and parents may mishear or mis-understand the information and then worry unnecessarily. Keith and I were very lucky in the fact that Dr Mok or Dr Tasker always came back to us afterwards and kept us up to date on their ideas of what might be wrong with Zoe. We knew that everyone was doing their best, and that they were telling us all that they knew.

This particular morning Dr Mok returned at the end of the round and told us that the lumbar puncture had showed nothing abnormal. The CSF was clear. Another theory out of the window!

Following the scan and lumbar puncture Zoe's sedation had been lightened over night and by the morning she was breathing for herself again and was, therefore, taken off the ventilator. She was, once again, moved to a three bedded bay, alongside her old cot space. She was in Peter's old cot space and I, in conversation, asked one of the nurses how he was getting on. I was told he had died a few days earlier.

The medical staff decided that Zoe should begin milk feeds again. I was unhappy about this as I could envisage the whole process starting again, but, who was I to stop them? They had to try and find out their answers. The jejunal tube hadn't been used for a few days and, by now, was blocked. It was removed and a naso-gastric tube passed in it's place, despite my lack of enthusiasm. Zoe could then, at least, re-start her medication via the tube, and, if possible a naso-jejunal tube would be passed later. It took several attempts to pass the naso-gastric tube and Zoe, apparently, at one stage, turned black and needed bagging and extra oxygen. We had been asked to go to the Parents’ Room so we had not seen this episode, but Tony, Zoe's nurse, told us of it afterwards.

Keith's eldest brother Ian and his wife, Imelda, visited us that afternoon, as did Simon, Rachel and Peg. There was quite a gathering in our little corner and Oliver had a lot of attention and people to talk to. We had Zoe out of her cot and she gave everyone beaming smiles. She had such long long eyelashes which almost reached her eyebrows, and when she smiled she looked very pretty. Ian and Imelda had not seen Zoe since she was few weeks old as they live some distance away from us, and I think it was quite a shock to them to see her connected up to various tubes in such an alien environment. They were also to be Zoe's Godparents.

The next day, Sunday, Zoe was moved further along the PICU into the next bay. My parents came to visit, and so did Clare, my friend who had visited us in Brighton. She came with her family but, as her husband, Michael, had a cold, he and their two boys stayed in the Playroom.

Zoe was improving every day following her cardiac arrest, and, this particular day she was bright and smiling. There had been several attempts to pass a naso-jejunal tube but they were unsuccessful so naso-gastric feeding was commenced once again. After this, Zoe's cough markedly worsened and I pointed this out to anyone who would listen.

Our friends from Uckfield travelled up to see us on the Monday. I had completed my nurse training with Elaine (who was Clare’s friend) back in 1979, and she and her husband Paul had a restaurant in Uckfield. They have two boys but they had left them with their grandparents. Zoe had several minor episodes that day. She needed a chest X-ray and the radiographer wanted her lying flat on her back which kept making her, momentarily, stop breathing. I would have to bag her to start her breathing again, then begin the whole positioning process all over again. It was a trying time and I got very anxious that she would have another cardiac arrest.

Elaine and Paul stayed several hours and the chat flowed easily. Elaine, like Clare and my other nurse friends, was used to such environments so felt more ‘at home’ and comfortable in the situation we were in. I felt tearful when they left (as I did when everyone left us) as I couldn't help but wonder if this would be the last time that they would see Zoe. I am sure the same thought went through everyone's minds.

That afternoon Mr Pierro's Registrar came to insert the probe internally for the second pH study. This involved passing yet another tube down Zoe's nostril into her oesophagus and leaving the tip of the tube just above the stomach entrance. This probe was to measure the acidity of the liquid around it and determine whether the acidic stomach contents were slopping up into the gullet. I was very nervous, having seen Zoe turn blue during so many naso-gastric insertions and I kept telling the poor Registrar to be careful and that he would need the bagging equipment and oxygen nearby. Almost before I had finished speaking he had the probe inserted with absolutely no bother at all! He probably thought that I was a completely mad and over-reactive mother, but then he had never seen Zoe as I had seen her.

The pH study was to last for 24 hours. There was a little box attached to the external end of the probe and the readings were to be stored in this box for later analysis. On the side of the box were displayed the ever-changing pH levels. I continually watched the numbers over the next few hours and I got more and more excited as time went by. The reading was continually as low as one or two which is very acidic. We had our answer! I had it all worked out. She DID have reflux. She would have the operation and all would be well. Simple! Anyone who telephoned us that night at Rainbow House heard very positive news.

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The next day, February 21st, was Keith's 42nd birthday. Several members of our family had asked him if there was anything he particularly wanted for his birthday - his only reply was that his daughter would get better and be able to go home. It was the present that we all desperately wanted.

We spent the day quietly sitting beside Zoe on the PICU. Tony, the Staff Nurse who had been caring for Zoe for the last few days was excellent. Oliver was taken into the kitchen by Pamela and more cakes emerged (with no fire bells!) and Oliver delivered the tray of fairy cakes to all the PICU staff. The pH probe was removed at 4.30 pm and sent off for analysis.

That evening before we left Dr Tasker came to talk to us. He told us of the three theories that were still being considered as to the cause of Zoe's symptoms. One was that the mycoplasma was still prevalent in Zoe's body, another was that she had a neurological condition, commoner in the Jewish population, which was causing an abnormality of her upper airway and swallowing mechanism, and lastly, that she had gastric reflux. I asked him if he thought that reflux could possibly be Zoe's only problem, and his reply was that it most certainly could. I told him of the low pH readings and he said, "Let's hope that's all it is then!".

The next day Zoe was moved back to Churchill Ward again under the care of the Neurologist Dr Jane Collins. This disturbed us slightly as we still felt that Zoe had the neurological label which she just couldn't shake off. We felt, wrongly we now realise, that Zoe should be anywhere BUT the neurological ward. The Respiratory or the Gastro-intestinal wards would surely be more appropriate for her symptoms? No-one else agreed.

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One morning I had arranged to have my hair cut. We had now been in hospital with Zoe for nine weeks and any normal events, such as going to the hairdressers, had all been forgotten. But my hair was now too long and I had no time every morning to blow dry it and make it look presentable. I had found a hairdressers the day before, just around the corner from the hospital, and had made my appointment. At the designated time I went, armed with the pager, to have my hair cut to a ‘short and easy to manage’ style. The trendy young man with the scissors certainly took my request literally, and I was left with a light covering of hair, with nothing to blow dry even if I had wanted to!

It was a very strange experience being outside the hospital and doing a normal activity such as having a haircut. In and around the hairdressers other peoples lives were carrying on with, it seemed, no thought whatsoever for the hundreds of sick children just around the corner. How lucky they all are, I thought, not to be affected by tragedy and illness. I now realise that you cannot ever imagine what traumas are going on in other peoples' lives just by looking at them. To fellow clients in that hairdressing saloon I was just another person having her hair cut. No-one could tell of the nightmare situation I was in. (They did have a slight inkling that I was not totally at ease when a bleep sounded indicating the completion of a perm, and I jumped from my seat in sheer panic thinking it was the pager and the hospital needed me!)

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The following day, 23rd February, Zoe was six months old. She was rapidly gaining weight due to a high-calorie supplement that was being added to her feeds. She now looked considerably more healthy than when we first arrived in London. Keith and I accompanied her to the X-ray department for a repeat of the barium meal investigation. Every investigation she had ever had had now been repeated to see if anything had been missed.

Going to the X-ray department was quite an expedition. We took Zoe and all the resuscitation equipment on the cot. Myself, Keith, Jo (Zoe's nurse for the day), and the SHO on duty (in case Zoe stopped breathing) walked alongside. We made quite a procession as we travelled through the old corridors to X-ray.

I'm afraid my nurse / mother instincts took over that morning and I, knowing Zoe as none of the others did (apart from Keith, of course) took over and dominated proceedings. The radiographer did not like me being there, and liked it even less when I climbed on the X-ray table and began giving oxygen to a distressed Zoe, who was on the brink of yet another bronchospasm. I was past caring what anyone thought - my priority was to get Zoe back to the ward without her arresting in the X-ray department. I had seen the signs preceding an episode so many times, I just knew what was coming if they carried on, so I asked them to stop. The radiographer had some excellent pictures which did show some reflux, and I felt there was nothing to gain by trying out yet more barium or Zoe in different positions. Jo, the nurse, agreed with me and the entourage proceeded safely back to the ward. My parents were waiting for us.

Jo had looked after us all very well during the time we spent on Churchill Ward. She was a very kind and efficient young nurse and I was, therefore, quite shocked when my mother said that Jo had approached her shortly after the X-ray trip as she thought that she had upset me by not being forceful enough during Zoe's barium meal. Such a thought was furthest from my mind. My utmost concern was for Zoe's welfare, and not who had said, or not said, what. I had not expected Jo to halt the proceedings as Jo had not seen one of Zoe's episodes. I knew my daughter well enough to know when she had had enough, so, I felt it was up to me to stop everything, which I did. I apologised to Jo for making her think such a thing, and assured her that it was not true. She was most embarrassed that my mum had told me!

Later that day another good friend, Claire, and her husband Nick came to visit us from Haywards Heath. They have three girls, who they left with Claire's parents. Claire, myself and Pip had gone through secondary school together and had remained in contact ever since. Zoe was having a very good afternoon, she smiled, chuckled, and chattered for Claire and Nick, and they were amazed at how well she seemed. I had been asking the staff all day if there was any news of the result of the pH study, but, as yet, there was none. I explained to Claire and Nick how low the readings had been, and I said that I was sure that this was Zoe's problem.

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That day my parents told us that one of the houses in Worthing, near our own, had been burgled. The burglar had escaped across our garden, leaving his footprints in Oliver’s sand pit. We were worried as our house had now stood completely empty for nearly a month. Keith decided that he would go back to Worthing on Friday for the weekend and make sure that all was well. Oliver and I would stay in London.

On that Friday we had a lovely surprise. I saw the face of my Uncle Alan (my mother’s brother) through the glass of our cubicle. He was standing in the corridor, about to ask one of the nurses where we were. It was a wonderful surprise to see him - we hadn't been in contact with him since arriving in London, but my parents had kept him informed of Zoe's condition. He had never seen Zoe before and was, I think, shocked at all the tubes and machinery that was attached to her. To us, Zoe was having a good day (because we had seen far worse) but we forgot that, to others, it was not normal to see a baby looking as Zoe did. She was pale faced with pipes coming out of her nose and her head held back. To us, though, she was still beautiful. My Uncle Alan stayed a few hours, chatted to us, played trains on the floor with Oliver and left around tea-time.

It was promised that we would receive the results of the pH study on that Friday so we waited expectantly. After Uncle Alan left, Pip arrived. By 6.30 pm Oliver was thoroughly bored so we prepared to leave the ward without knowing the results. As we got to the lifts Mr Pierro's Registrar, whom we had waited all day for, emerged. We all went back to Zoe's room and waited for the verdict. He explained that the pH study did, indeed, show very low readings. So low, in fact, that it had to be assumed that the test was of no use - the probe must have actually been inside the stomach. "No reflux could be that severe," he told us. “The test must be repeated.” It was to be Zoe's third pH study! The doctor then re-inserted the probe, as expertly as before, and as we left the ward the portable X-ray machine arrived to take yet more pictures of Zoe's chest to check the position of the probe.

The next day, Saturday, Zoe was moved along the corridor to a four bedded room at the end of Churchill Ward. Her original cubicle was needed for another patient. None of Zoe’s regular nurses were caring for her that day. Instead, an Agency Nurse (who was employed by the hospital to work any shifts that were short of staff) was responsible for Zoe’s care. It worried me that she was now in a main ward and that none of her regular nurses were looking after her. I hoped that the extremely high standard of care that she was used to continued. It did. Towards the end of the morning, though, I realised I didn't much care for the nurse looking after Zoe. I usually cuddled my baby whenever I liked, but this particular nurse told me to lie her back down in her cot after about an hour so that she could rest. I didn't take too kindly to being told what I could or couldn't do with my own daughter.

Now, in the same room as Zoe, was an 18 month old boy with cerebral palsy and hydrocephalus (an abnormal accumulation of CSF within and around the brain). His shunt, draining the CSF, had blocked and he was vomiting and in pain. The poor mite screamed constantly. He also had an identical twin (whose shunt hadn't blocked) and he was with his grandparents while his brother was in hospital. The boys' parents were at the hospital and we talked briefly, both of us, I think, feeling sorry for each other.

Peg, Simon, and Rachel came up that Saturday (as usual) and we sat in our new environment chatting and cuddling Zoe. I remember that she gave a particularly long and loud cough that morning, then a loud shout afterwards which made the Senior Staff Nurse, Steve, who was passing by at the time, laugh. He made some funny quip, I can't remember what now, and everybody chuckled. Zoe enjoyed all the attention and had a lovely day being walked around on Keith’s or my chest. She was having full strength feeds again now and these were two hourly via the naso-gastric tube. I knew that her cough was worsening in conjunction with the feeding being increased, but generally she was much better. I hoped that the constant vigil by the nursing staff wouldn't cease now that she seemed improved, had a new nurse, and a new room.

Keith, we arranged, would travel back to Worthing that evening with Simon, Rachel, and his mum. They would take him to my parents house to collect our car, then he would go on to Worthing to check our house. He would then return to my parents house in the morning, leave our car there, and travel back to London with them in their car. So, around 6 pm they all departed leaving Oliver and I with Zoe. As he left, Keith told Zoe that she must be a good girl and behave herself.

Oliver and I stayed a while longer on the ward with Zoe, and then we left to go back to Rainbow House. It was nearly 7 o'clock and dark, and I didn't relish the thought of walking the streets of London much later than this. Once back at the house I took Oliver upstairs to bed then settled downstairs and chatted to the other families in the house. Keith rang to say that he'd arrived home safely and that it was freezing! I wrote some letters and went to bed.

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Oliver and I awoke the next morning and went down the two flights of stairs to the kitchen for breakfast. It was just after 9 am when we finished eating and I suddenly knew that I must telephone Churchill Ward. I can't explain why I wanted to, as we had never ever rung the ward before walking to the hospital before. I rang and the hospital switchboard operator tried ringing both the ward phones but they were both engaged. He told me that there had been an emergency on Churchill Ward and could I please try ringing later. As I replaced the receiver, a bleep sounded loudly in the quiet kitchen. It came from within my handbag. The pager. I froze, then frantically began dialling the hospital again, telling the switchboard operator, "I am that emergency's mother. You MUST put me through, please". Tess, the New Zealander, answered the phone on the first ring. "I'm so sorry,” she said, “Zoe had an arrest at 08.30 this morning". "Was anyone with her?" I demanded, desperate to hear that she had not been left alone. "Yes, I was with her,” she said,” I was giving her a feed". It suddenly occurred to me that Zoe might be dead. "Is she still alive?" I asked. "Yes," came the reply, "but she's just been taken down to the PICU on a ventilator."

It was 9.15 am on Sunday 26th February. Keith was due to arrive at my parents house in half an hour so I rang and left a message for him. They would all leave Haywards Heath as soon as he arrived.

Then Oliver and I ran all the way to the hospital, through the deserted Sunday morning streets. We ran and ran, and when Oliver couldn't run anymore I picked him up and carried him. I told him that we must get there very very quickly as his sister was suddenly not very well. I was dreading what I would find when we got there - especially as it was just Oliver and I. We arrived on the PICU and ran straight over to a cot that was surrounded by doctors and nurses. There was Zoe, sleeping peacefully, on a ventilator. We were asked to wait in the Parents' Room until they had finished sorting her out.

The Parents’ Room was empty so Oliver and I sat down. I was breathless from so much running. Oliver patted my hand and said, "Don't worry Mummy, it will be all right". Then he got me a cup of water from the tap in the corner of the room. I was willing Keith to hurry up. It was amazing that we had spent all these weeks with Zoe in London and the only morning that one of us was missing she has another cardiac arrest. It was unbelievable.

As I calmed down from the initial shock I began to think. Yet again, this episode had occurred during a feed. I was absolutely convinced that feeding was connected to her problem and I was adamant that I wanted Zoe to have nothing further into her stomach until a cause for all these episodes had been found. She had arrested twice now and time seemed to be running out. They had to find out what was wrong with her, and soon - we might not be so lucky next time. A nurse came to update us on Zoe's condition and I told her of my thoughts. She agreed that there did seem to be some connection between the episodes and feeding. I asked her how much the parents wishes were taken into consideration in such instances and she assured me that my views would be heard.

I was allowed to go in and see Zoe, who was sleeping on her side with a ventilator tube protruding from her nose. The naso-gastric tube had been ripped out in the panic of the arrest, as had the pH probe (which had remained in all night despite the test finishing at 7 pm the previous evening). I hoped that the answers inside it could be salvaged.

Zoe was not sedated, and was mostly breathing for herself - the ventilator ‘kicked in’ every now and then. Luckily I had grabbed my camera in the rush to leave Rainbow House, and now I asked the nurse if I could take a photograph of Zoe, just incase she died before Keith arrived. I thought that the nurses would think this request rather odd, but they didn't seem to at all. And, in fact, I am glad that I did take the pictures of her as, sad though they are, they are all part of how we remember her. I told the nurse that I would show Zoe the picture when she was older, just to remind her what she had been through.

One of the members of the Crash Team (a team of trained staff from the PICU that attend all arrest situations within the hospital) came over to talk to me. She had also been present at Zoe's previous arrest, and she told me that as soon as Churchill Ward came up on her pager she just knew that it would be our Zoe. She was heavily pregnant herself, and I wondered how it must feel for her to be resuscitating all these babies when the birth of hers was so imminent.

Keith, Mum and Dad arrived about 11 o'clock. Oliver and I were waiting out in the corridor for them as the doctors were with Zoe. I told Keith what had happened, and when we were called back he and I went over to Zoe's cot. She had just ‘extubated’ herself (pulled the tube out from her nose) and was lying awake just looking around. She took one look at her dad and, once again, gave the most enormous smile! I couldn't resist taking another photograph of her, smiling broadly, only five minutes after coming off a ventilator.

Mum and dad came in and saw Zoe, then took Oliver out to the park across the road. Keith and I, once Zoe was sound asleep, went back over to Churchill Ward to thank them for their prompt actions that morning, and to collect the rest of Zoe's belongings. The staff were still clearing up the ward and re-stocking the crash trolley. I saw Zoe's nasal oxygen cannulae lying on the floor where her cot used to be. They were full of milk and it was trickling out on to the floor....

As I took all of Zoe's sleepsuits out of her locker the mother of the twins came over. She had been asleep on the floor by her son's cot that morning and, so, had seen it all happen. We told her that Zoe was, once again, smiling, and that, by now, we were getting used to this pattern of events! She probably thought us quite blasé about the whole business!

Tess came up to us and greeted us both with a big hug. She recounted the happenings of the morning and then apologised if our daughter’s first word turned out to be "SHIT". Apparently all that Tess could say during the entire Crash Call was "Shit, that doesn't fit!" and "Shit, I've dropped it!" or, "Shit, that's not long enough!" etc. etc. Even on that dreadful morning we still managed to have a laugh with those wonderful staff on Churchill Ward.

Unbelievably, Zoe remained alert and smiled frequently for the rest of that day on the Intensive Care Unit. She could roll herself over from one side to another, something she had been doing for a few weeks now, and she could pick up and grasp her toys, taking them to her mouth to suck, along with her favourite two fingers. All indications, we felt, that she was continuing to develop normally. Her cough was back, much worse due to the aspiration of milk into her lungs that morning. The staff seemed to have taken heed of my comments (or, maybe, they had thought it best themselves) and Zoe was to have no further milk until she had seen the surgeon, Mr Pierro, on his return from holiday the following day. A decision would then be reached about her operation.

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Victoria, the girl who had had the brain haemorrhage, was now in the bed next to Zoe's cot. She was still ventilated and deeply unconscious. Her condition had not changed in the last few weeks. Tracey and Mark would sometimes sit with Victoria on their laps reading stories out loud to her, waiting for some indication that she could hear them, or a flicker of recognition. None came, but their patience was infinite.

There was a portable music centre in the PICU that could be wheeled around and plugged in beside individual beds allowing the children to listen to music. Victoria's classmates had recorded their school assemblies and concerts and these tapes were played to her over and over again in the hope that she would show some response. There was also a selection of music and story tapes belonging to the PICU and the staff would play these quietly to the ventilated children to try and stimulate them. (The sense of hearing is very often still present even if the patient is unconscious.) There was one particular tape, "Twinkle Twinkle Little Star" which seemed to be played over and over again. Hearing those songs, sitting beside Zoe on the PICU became a regular feature of our days. Once or twice I began to sing along to an awake Zoe, only to stop, my eyes watering, when I realised the words I was singing - "Twinkle Twinkle Little Star, How I wonder what you are. Up above the world so high, like a diamond in the sky..."

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Monday 27th February heralded the end of Mr Pierro's holiday, and one of his first jobs, it seemed, was to see Zoe. He arrived on the Unit soon after 9 o'clock, just as we were returning from the Parents’ Room following the PICU doctors ward round. Mr Pierro said that he was very sorry to hear of the weekends events, and he asked us to follow him to the Relatives’ Room for a ‘little chat’.

Mr Pierro explained that the pH study did show some reflux. The episodes of high acidity had been infrequent, but, when they had occurred they were prolonged, indicating that Zoe was indeed experiencing oesophageal reflux which was, maybe, causing some of her symptoms. He stressed that the reflux was probably only a small part of Zoe's problem, and that there was likely to be more that was wrong with her. "I don't guarantee that this will be the end of her problems, Mr and Mrs North, but at least we have proved that this is happening and we can deal with it. I feel it is severe enough to warrant an operation." He went on to explain the operation itself, and then we signed the consent form which would allow Zoe to have a "Fundoplication (Nissen’s) and insertion of gastrostomy tube". The operation would take place in two days’ time, on Wednesday 1st March. It involved, simply, tying the top of Zoe's stomach so it would allow milk, and later food, to go down, but nothing could come up. A, hopefully, temporary gastrostomy tube would be inserted into Zoe's stomach and this would remain in until a cause for her inability to swallow had been found and treated. The operation meant that she would never be able to vomit - a small price to pay, we thought. For Keith and I it was a start. At last we seemed to be beginning the treatments as opposed to just carrying on with the investigations.

Wednesday just couldn't come quickly enough for me. Zoe had several episodes where she had difficulty breathing that Monday. Her cough had definitely worsened since the previous day’s arrest and so I blamed the episodes on the increased secretions as she was no longer having any milk. Looking back I always found a logical excuse for everything! Mr Pierro had agreed that since reflux was indicated, Zoe should have no further milk until after the operation.

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Tuesday 28th February was a very busy day for us. We were expecting lots of visitors of our own to arrive, and Princess Diana was also coming to certain parts of the hospital to meet the children, their relatives, and the staff. She was scheduled to visit the Play Centre, which Oliver had attended for the last six weeks, and he was one of the children chosen to meet her. That morning he had, of course, woken with a streaming cold!

Security was tight as we entered the hospital that day. Two police officers were standing outside the main entrance under the covered walkway leading to the hospital doors. They bid us a "Good Morning," and Oliver looked at them in amazement. All the emergency services were his heroes at the time, and seeing real policemen so close just made his day! They were very friendly and picked him up, sensing his wonder, and one of them put his hat on Oliver's head. Camera already in hand, I managed to capture the moment!

Inside the hospital there seemed to be an air of excited anticipation - cleaners were cleaning corridors that were already clean, and everybody seemed to be walking fast and talking into mobile phones. We all went up to see Zoe, then Keith and Oliver left to go to the Play Centre. Each child was allowed to be accompanied by one parent when he / she met Princess Diana. I stayed with Zoe, who had had a good night, was awake and looking very well. She had rosy cheeks and was getting quite a lot chubbier. She smiled and chattered to me, fluttering her long long eyelashes. She really was very beautiful.

The window of the Parents’ Room looked out on to the hospital's Main Entrance, so, at the designated time I was able to look out and see Princess Diana emerging from her car. It was a moving moment, seeing her coming to the hospital to give us all support. I still couldn't quite believe that I was there - in the Intensive Care Unit of the best children's hospital in the world with our daughter who was so seriously ill. Keith and Princess Diana exchanged a few words about Zoe that morning in the Play Centre, amid the press camera bulbs popping, and Oliver was privileged enough to appear in that night's late edition of the Evening Standard, the following day's Daily Express, and the following month's Hello! magazine! It was a bit of light relief for us all.

Zoe was having a good day, her last before surgery. Dr Mok came by and chatted to me. She told me not to get my hopes too high as she was sure that Zoe's problems would not end with her operation. She still felt that our daughter would require a tracheostomy, at some stage, to help her breathing.

Mid-morning my friends from work, Rhona and Jane, appeared, and from that moment on activity around Zoe's cot was constant. Mr Pierro arrived to give Zoe a final check over before her surgery, and he, once again, commented that the operation might not solve all her problems.

At 11 o'clock I took Rhona and Jane to the Parents' Room and we watched Princess Diana leaving the hospital, shortly followed by the arrival of Oliver and Keith on the PICU excitedly telling us of her visit. We brought some sandwiches from the Peter Pan Cafeteria and settled down in the Parents’ Room to watch the visit on the television lunch time news. I then caught up with all the news from work!

When we returned to Zoe she was sleeping. Kevin and Ingrid arrived. We had spoken to them on the phone several times since our arrival in London but it had been difficult for them to visit. It was good to see them. Ingrid bent over to kiss Zoe and began to cry. I put my arm around her shoulders and said, "Don't worry, Ingrid. She's having a really good day. She's fine". I hoped with all my heart that she was.

The next person to join our gathering was our friend from Worthing, Tony. He was in London on business. Keith and I had both known Tony for several years before we met each other. Previously Tony had been in the Ambulance Service, but he now works for a very reputable and well-known undertakers in Worthing. He had come to London to collect a body from another hospital, and thought that he would call in to see us. His stay was brief, but thought provoking, and I think both Keith and I made unspoken decisions that day.

Rhona and Jane left us as they wanted to visit a London book shop, so Keith and I spent the afternoon beside Zoe with Kevin and Ingrid. I had Zoe on my lap for most of the afternoon. She still had many pipes and tubes coming in and going out of her. She had an intravenous infusion, and this was going into one of her scalp veins. The actual site of her infusion was covered by a gallipot to protect it - it looked rather odd stuck on the side of her head! She, bless her, was oblivious to it all and nothing could stop her smiling all day. The clowns came to visit and Zoe gave one of them such a quizzical look which was captured on camera. Many photos were taken and we were all very relaxed. A tired Oliver returned from the Play Centre with his face painted as a clown (runny nose and all!). We tried to keep him away from Zoe to save passing on his cold.

We fell into bed that night excited, but nervous about Zoe's operation which was to be the following day. Maybe, just maybe, we would be extremely lucky and this surgery would end all our problems.

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Type 2 Gaucher Disease
Neuronopathic Gaucher Disease