Twinkle Twinkle Little Star - Continued
Earlier chapters
Type 2 Gaucher Disease
When we woke it was Wednesday 1st March - Zoe's big day. Keith and I spent the morning beside her, and Oliver was at the Play Centre. At 2 o'clock I escorted Zoe and her nurse, Shelagh, to the Anaesthetic Room. As Mr Pierro entered the room Zoe was given some gas to make her sleepy and I said my goodbyes and kissed her. I was not in the least bit tearful - I was elated - we were finally beginning Zoe's treatment. After months and months we had found something that was wrong with her, and now it was going to be corrected. Keith was at the Play Centre so I went back to the Parents' Room and wrote a few letters while I waited for Zoe's return.
She was wheeled back to the Unit about an hour later. She was breathing on her own and not ventilated, which was good news. The Anaesthetist told us that the operation had gone well. A blood transfusion was going into a vein in Zoe's right arm. Apparently she had been anaemic before surgery so was being given a ‘top-up’ transfusion. She still had her scalp drip which was giving her fluids and also some drugs to control any pain. The anaesthetic had made her very relaxed and her usually hyper-extended neck was now looking normal and her chin could touch her chest.
I was allowed to give her floppy little body a ‘post-op’ wash soon after she came back from the operating theatre. I was very gentle in case anything hurt her. As I washed her I told her how brave she was being and that Daddy and I were very proud of her. I told her that all she had to do now was get over the operation and hopefully soon we could all go home.
Shelagh looked after Zoe, and us, excellently. She was a quietly spoken nurse who instilled confidence in us as soon as we met her. She monitored Zoe constantly and carefully. A small rubber tube (the gastrostomy tube) emerged from Zoe's tummy. Shelagh freely chatted to us as she went about her work which helped to pass the time.
Early that evening we left the sleeping Zoe and went back to Rainbow House to put Oliver to bed. We were feeling very optimistic about the future. Zoe had had the first treatment on the road to her recovery - hopefully now she would not have any further breathing problems as her stomach contents could no longer be regurgitated into her lungs. Our optimism was short-lived.
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Oliver was not feeling very well with his cold, and he started to sound slightly wheezy as the evening progressed. Our GP at home in Worthing would not label Oliver ‘asthmatic’ at the young age of three years so all we knew was that he had a tendency towards asthma. He had given us a bottle of Ventolin syrup for Oliver when he had sounded wheezy several months earlier, and luckily I had brought it to London with us. I gave him a couple of spoonfuls of Ventolin and got him ready for bed. He lay on the settee in the lounge watching a video while Keith and I prepared our dinner downstairs in the kitchen. We had just sat down at the table to eat when the telephone rang. Another parent answered it and called us. Keith went to the phone. It was the PICU saying that Zoe had stopped breathing. She hadn't taken long to start again, but they felt that they should let us know. If it happened again, they said, they would ventilate her and inform us.
So, it seemed, the operation hadn't helped her breathing problems. But maybe, we thought, this problem was due to all the increased secretions as she lay so still for the operation, or maybe it was from the trauma of the Anaesthetist's tube, or maybe we just didn't want to believe that she still had something else wrong with her that was causing all these symptoms.
We ate our meal quickly, and in silence, our earlier optimism vanished. Keith walked back to the hospital to see Zoe and I stayed to look after Oliver. I went upstairs to see how he was and he was very hot and sweaty. I took his temperature, which was 38.5C. Now what was going on? His wheeziness had increased so I gave him some more Ventolin and some Calpol and debated whether to try and find a GP and call him out. Looking back, I wrongly decided that we would ride the storm alone that night. The thought of finding an unknown doctor, dragging him out, and having to explain the whole story from the beginning was just too much - besides which I was unsure whether Oliver was bad enough to need a doctor. I decided to manage, just as we had done many a night back in Worthing, and vowed that once Zoe was over this crisis we would get Oliver properly sorted out.
I say ‘wrongly’ as this developed into the worst attack that Oliver had ever had. His coughing increased and as he fitfully slept, his breathing became quicker and quicker. When the hospital bleeped us at midnight to say that Zoe had stopped breathing yet again I was nearly at the end of my tether. She was now ventilated and quite safe, so the staff assured us that there was no need for us to go over. This was just as well because there was no way we could leave Oliver with anyone.
I lay awake all night listening to Oliver's breathing. It was very very quick. He had fallen asleep in my bed that night, so I had crawled onto the mattress on the floor between our two single beds (which was Oliver's) and lay there, just waiting for daylight.
My mind played terrible tricks on me that night. I wondered if some freak of nature was going to rob us of both our children in one night, or maybe we had been so concerned about losing Zoe but really it was Oliver that we would go home without. It really was the most awful night, every now and then calmness would intervene and I knew such thoughts were ridiculous, but then the evil thoughts of darkness would again take over.
At 5 o'clock Oliver stirred. He was quite delirious and asked me to "get rid of all the towels". I gave him some more Calpol and Ventolin and he dozed off again. As the light began seeping through the curtains Oliver's breathing finally slowed. We had nearly made it! I got up, bathed, dressed and decided to carry Oliver to the PICU as early as possible, and then if he was still breathless maybe someone there would help us. At 6.30 am I was ready, so I woke Oliver. To our astonishment he woke up, said that he felt better, and asked if he could have a bath! Yet again he had improved as soon as daylight had arrived.
After a leisurely breakfast we left Rainbow House at 8 o'clock and as we walked along Guildford Street that morning no one would have realised the terrors that the night had held for me.
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Zoe was still ventilated when we arrived on PICU and her nurse for that Thursday was a young girl called Emma who had looked after her several times. Oliver was running around by now, so it was hardly appropriate to ask one of the doctors to listen to his chest as an emergency! Instead I asked for a list of local GP’s and Emma rang one and made an appointment for Oliver that afternoon. He happily went off to the Play Centre as usual. At some point in the morning Emma casually mentioned that Zoe had become wheezy. As soon as she said this I immediately thought of little Peter who had been ventilated, become wheezy and then died. I tried to shake the thought from my mind but I just couldn't. I always knew that we could lose Zoe at any time but now I realised just how close we were. Missing a night's sleep did not help and when the tears finally started they just would not stop.
Poor Emma tried to comfort me, but there was no real comfort - no-one could tell me what I wanted to hear - that Zoe would be okay, and, luckily, no-one tried. I went into the empty playroom and Keith followed, wondering what had happened. I explained about the wheeziness and little Peter. Keith had been asking me for several days to have a break from the hospital and go and stay with my friend Pip for a night. He chose that moment to say it again and got a somewhat definite and loud answer. There was absolutely no way that I was leaving my daughter, not now, not ever.
It was at least an hour before I emerged. Having coped with everything that had been thrown at us for the last 10 weeks, today I was definitely not coping. So many people had told us how brave we were and that we were coping so well and they didn't know how we were doing it - they certainly couldn't, they said. But, what do you do? If you have a sick child you just have to get on with it. No one ever imagines that they will be in the position we were in - we certainly didn't. You cannot pretend it is not happening and you have absolutely no choice but to get on with it as best you can, and hope against hope that you all come out of it together. I came out of the playroom feeling a lot better than when I went in - once again resigned to the fact that we had no control over the events in our lives and that ‘what is to be, will be’ (a favourite saying of my father's).
My parents had arrived shortly before my outburst, and had taken Oliver over to the hospital canteen for some lunch. Keith and I sat quietly and ate a sandwich in the Parents’ Room. It was a very subdued day, with, in my mind, very little hope left now. There seemed to me to be such a fine line between life and death, and right now Zoe was dangerously close to that line. I had, several times, observed a special two-seater settee that I would see carried into many curtain-drawn cubicles on the PICU. In hushed tones the chair would be taken in, and several hours later it would be carried out again. I wondered and wondered about the significance of the chair, and then I finally realised that this settee allowed both the parents to cuddle their dying child on their laps. I wondered if we would soon be sitting on that settee.
Late the following afternoon a lady wearing a white coat came into the PICU and over to Zoe's cot. She introduced herself and said that she had been sent to take a bone marrow biopsy from Zoe. "My God!", I thought, "What are they thinking of now? Leukaemia? Lymphoma?" As I work on a ward that deals with the treatment of these conditions they immediately sprung to my mind. I asked her, and she told us that the test was to see if Zoe had a very very rare condition called Gaucher's Disease.
She added that we probably shouldn't worry as she had been asked to test other children for this condition many many times, and it had always proved negative. I thought it would be just our luck for Zoe to be her first positive. I asked where she would take the biopsy from and she asked me if, due to all my questions, I was a nurse. I told her that I was, and we were then asked to wait in the Parents’ Room while the procedure was carried out as she said it would not be pleasant for us to watch. We didn't mind staying, but she obviously preferred us not to.
We waited down the corridor in the Parents’ Room whilst they increased Zoe's sedation and took some of the marrow from the inside of her hip bone. We were allowed back in immediately afterwards and sat beside a sleeping, ventilated Zoe. One of the doctors, a Norwegian Senior House Officer called Thor, came over and began to chat with us. I asked him how soon we would get the results of the biopsy and he replied that they should have some idea within a couple of hours. It was soon after 4 o'clock when this conversation took place.
Pip arrived at 5 o'clock and she kindly took Oliver to the Playroom when Dr Mok came over to speak to Keith and I around 6 o'clock. Dr Mok asked us if we would be free to meet with herself and Dr Collins the next day, Saturday, at midday. She added that she should have a definite answer for us by then. After she had gone we realised the implications of what she had said and I said to Keith, "They know something already," but neither of us was prepared, at that stage, to push it any further and get the answers there and then. We needed time to think about this one.
Back at Rainbow House that night, with Pip having left, Oliver in bed, and Keith back at the hospital I spoke to Rhona on the phone. I asked her to look up ‘Gaucher's Disease’ in her medical textbooks. She couldn't find much information on it but managed to find one sentence which said, "Frequent causes of hypersplenism include portal hypertension, Gauchers Disease, etc. etc. Splenectomy or a reduction in splenic size by appropriate therapy relieves the anaemia and improves the neutrophil and platelet count”. So maybe things were not as gloomy as all that, and perhaps removing Zoe’s spleen would help her.
We slept the night, ate our breakfast and walked to the hospital as usual the next morning, constantly thinking of what we would hear at lunch time. Sitting next to the sleeping Zoe, who every now and then would wake and smile lovingly at me, my eyes were full of tears. I commented to Gail, Zoe's nurse for the day, that, knowing how hospitals’ work, this meeting just had to be very bad news. She didn't deny it. I also knew that it was Dr Collins's weekend off and that she was coming into the hospital especially to see us. It was not looking good and I could not hide my despair at the last, and cruellest, blow that we were about to receive.
Keith, needing to be busy, took all our films of Princess Diana to the nearest developer to be processed. He was gone for several hours, waiting for them to be done, and Oliver was down in the Play Centre. I sat on the high stool beside Zoe's cot, watching her, and trying to get to grips with the news we were surely about to hear.
Keith returned at 11.15 am and collected Oliver. We didn't know how long the meeting with the doctors would take so we had collected him early. I had brought with me, that day, plenty of colouring books and sweets to keep Oliver entertained beside Zoe whilst we went off and spoke with the doctors, but when the time came for us to learn our fate he wanted to come too. The moment Dr Mok said that Oliver must stay behind with Zoe my nightmare became a reality. I was obviously correct in my thinking, and there was no turning back as Keith and I were silently led down the corridor to the Relatives’ Room.
Once we were all seated, Dr Collins, Dr Mok, Gail, Keith and I, Dr Collins began, "I think you know what I am about to say, Mrs North, as you told the nurse this morning of your fears about it being bad news". She went on to explain that the bone marrow biopsy had shown that Zoe had Gaucher's Disease Type II.This is a rare hereditary metabolic disease due to the lack of an important enzyme called glucocerebrosidase. This enzyme deficiency results in the accumulation of a fatty substance (glucocerebroside) which is normally produced during the recycling of cells in the body but is then broken down by the enzyme. Babies with Type II Gaucher’s Disease lack the normal form of the glucocerebrosidase enzyme and are unable to break down glucocerebroside. Instead the glucocerebroside remains stored in the cells in the body preventing them from functioning normally.
Enlarged cells containing undigested glucocerebroside are called Gaucher cells and these accumulate in the bone marrow, liver, spleen and brain giving rise to the classic signs and symptoms of Gaucher’s Disease. Such signs and symptoms include failure to thrive, rigidity of the neck and limbs, squinting and difficulty in swallowing. Other difficulties include throat (laryngeal) spasm, seizures, and a failure to shake off colds and viruses. The spleen and liver often become enlarged with accompanying low blood counts.
The lungs may also be affected. There are three types of Gaucher’s Disease, Types I, II and III, and each type is different. Types I and III can be treated, but for the type that Zoe had, Type II, there was no treatment. Her life expectancy would not be greater than 12 months.
Dr Collins continued by saying that they would be happy to do anything that we felt would improve the situation. If we felt that a tracheostomy would improve her breathing problems, which it probably would, then they would be happy to ask the surgeons to perform one. But, ultimately, Zoe would still have the disease and the end result would still be the same. We all agreed that it wasn't fair to put her through yet more major surgery just to have her to ourselves for that bit longer.
Not wanting to raise our hopes too much Dr Collins did mention a type of treatment that had been performed in the United States of America in the form of enzyme replacement therapy called ‘Ceredase’. She was uncertain of the results of such treatment in Type II babies so said she wanted more time to contact the doctors concerned which she would do on Monday morning.
Everything else, it seemed, was in our hands. Whilst Zoe was still ventilated she was unlikely to experience any breathing problems so she should remain quite stable. It was up to us to decide if, and when, Zoe should be taken off the ventilator, and where we would like her to be after that had happened. Dr Collins and Dr Mok both said that they would agree to whatever we wanted. The choices were that Zoe could stay on the PICU, go back to Churchill Ward, be transferred back to our local hospital, or go home. Given the dramatic events of the last few weeks I thought that Zoe would probably die quite soon after coming off the ventilator if she was not resuscitated, and both the doctors agreed with this.
We, therefore, decided to stay in London and have everything happen away from home. After all, there was also the possibility that she may die in the ambulance if we transferred her elsewhere.
Keith and I both thought that there was little point in keeping Zoe ventilated now that we knew her diagnosis and poor prognosis. We decided that the ventilator should be turned off on the morning of Tuesday March 7th at 10 o'clock. This gave Keith and I the following day, Sunday, as the final day we could spend with our daughter alone, and the medical staff a final day (Monday) to perform any necessary tests on Zoe and to speak to the hospitals overseas.
Dr Mok went on to explain how Zoe came to have Gaucher's Disease. Both Keith and I, unbeknown to us, are carrying the gene responsible. Any two carriers have a 25% chance of having a baby with the disease and a 50% chance of having a future carrier. They only have a 25% chance of having a completely Gaucher free baby. Oliver, she explained, hasn't got the disease as he wouldn't have reached the age that he has, but he may well be a carrier.
The neurological damage of Gaucher’s Disease is irreversible and begins before birth. Symptoms are detected from three to four months of age, just as Zoe's had been. It is a very rare condition and most doctors in general hospitals or GP’s do not see a case in the whole of their working lives.
Keith and I were then left alone to digest all this information. It was all so final - there really was no hope left now - Zoe was going to die, and probably very soon. We would never again see her beaming smile, or hear her little chuckle. How would we explain it all to Oliver who loved his little sister so much? How on earth were we going to get through all this?
Keith was very keen to have Zoe Christened now. I was no longer fussed about such a thing - for me, if there was any doubt at all in my mind about whether there was a God or not I now knew for certain that there was definitely not. But, if Keith felt strongly about having Zoe Christened then I would go along with it. We later mentioned it to the staff and they said they would make the necessary arrangements.
Red-eyed we went back to Zoe. It broke my heart to look at her and know that she would soon not be with us. Oliver was in the Play Room with one of the nurses. My parents were due up the following day (Sunday) but I knew that we couldn’t properly take care of Oliver and Zoe until then. I knew that my mum and dad would take Oliver to stay with them for a while so that we could concentrate on Zoe for her last few days. I tearfully rang them and asked them to come up as it was not good news. They said they were on their way.
Half an hour later Keith's mum arrived with Simon and Rachel. We took them into the Relatives’ Room and told them the sad news. We all cried and hugged each other. Peg told us that no baby could have had more love. It was all so unfair - we loved Zoe so much and would continue to love and care for her whatever her condition, yet we weren't going to be allowed to.
A little while later, I don't know how long, Keith and I were beside Zoe. Simon and Rachel were with Oliver in the Play Room. There was a "Hi Ya," and Imelda's cheery face appeared around the corner. She and Ian (Keith's eldest brother) had come to surprise us. It was they who got the surprise. Keith quickly took them aside and told them the news. Then my own parents arrived with my brother. We all took over the Parents’ Room and sat stunned drinking numerous cups of tea. We took turns to go and sit with Zoe, two or three at a time. I took my brother down the corridor to see her and as she looked at me with her big blue eyes she seemed to be saying, "Do something, Mum. Help me!" and it broke my heart that I couldn't do a thing. Through my tears I remember telling my brother to, "Count your blessings, Richard. You never ever know what is around the next corner". He nodded, his eyes full of tears.
Gradually the afternoon turned to evening and, group by group, the family left us to go back to their respective homes. Oliver happily and excitedly went off with my parents to stay a few nights, and play with his cousins. It made all the difference that Oliver, bless him, had willingly agreed to our suggestion. It would have been the last straw if he had been upset and not wanted to leave. We didn't discuss Zoe with him anymore in case he was reluctant to go but we did make a point of him saying a special goodbye to her.
Keith and I then sat alone with Zoe. She looked no different to how she looked yesterday or the day before, yet now everything WAS so different. Gail, Zoe's nurse, suggested that we go and get something to eat. We hadn't eaten since breakfast and didn't feel in the slightest bit hungry, but, as she reminded us, we would need our strength for the next few days and so we must eat. She recommended a little bistro up the road from the hospital and, as we no longer had Oliver's bedtime to consider, we thought a break from the hospital was a good idea, so off we went.
We sat in the middle of the crowded, cosy, candlelit bistro amid all the romantic Saturday night couples and talked of the imminent death of our daughter and her funeral. Keith kept reminding me to keep my voice down as people began to look at us when they caught snippets of our conversation. How bizarre, I thought, when our whole world is crumbling around us the rest of the world carries on as normal.
I knew right from the start that I wanted Zoe to be in an open coffin at her funeral. We were so proud of her, and had nothing to hide, so I wanted the world to see her and be able to say goodbye. Many of our friends hadn't managed to see her in London so would never know how pretty she was with her long eyelashes, and how much she had grown. An open coffin with her ‘sleeping’ inside was much more natural for our baby, I felt. I had visited our local crematorium as part of a course I had attended the previous year so I did know that this option should be available to us. It was what we both wanted.
Keith suggested that Tony, our friend who works at an undertakers in Worthing, should be the person to look after Zoe when we no longer could. I immediately agreed and we decided to ring him later.
When we left the restaurant we went back to our daughter and sat with her for a while. We planned to spend the next day, Sunday, alone with her so we left fairly early that night to go back to Rainbow House and ring a few people. We have a large number of very good friends who had all constantly kept in touch with us and I desperately wanted them all to know that Zoe was soon going to die. The trouble was I had great difficulty in actually saying the word ‘die’.
It was all so new to us at this stage, and much as I wanted everyone to know I just couldn't ring 20 or 30 people and tell them that, finally, after all these months, Zoe was not going to make it. Each time I began I dissolved in tears upsetting the person on the other end even more. It was all very difficult. Thankfully our families helped out and rang round as many people as they could for us when they got home.
One person I did manage to talk to (just!) was Tony who promised that he would take great care of Zoe. I also spoke to our friends, Rhona and Karen, and after this I couldn't really tell anyone else - I needed to get used to the idea myself first.
It now went quiet whenever we walked into any room in Rainbow House. Conversations stopped and no-one really knew what to say to us anymore. We had met a new family the previous night whose son had had a cancer removed from his face. We had been chatting freely. Now the conversation was strained and we kept getting sympathetic looks from people. We were no longer in the same league - our child was dying and no-one knew how to react to us.
That night I spoke, once again, on the phone to Karen. She had been very upset on the phone earlier and I wanted to make sure she was okay. She asked if she could come and see Zoe the next day. Keith and I had wanted one last day alone with our daughter but this would mean that Karen might never see Zoe again or have a chance to say goodbye. I couldn't let that happen, so we agreed that Karen would arrive on PICU around 2 pm.
Our Sunday was spent sitting miserably beside Zoe’s cot. I rang Clare from the Parents’ Room and explained the situation. We were not interested in doing much, that day, apart from quietly thinking, and staring into space. Other parents stopped as they passed by and offered their condolences. Many cried with us. As it turned out, at 2 pm we were very pleased to see Karen and her friend Carole. They provided some light relief in what was otherwise a very very sad day. We rang my parents a couple of times day and spoke to Oliver. He seemed happy enough and chatted easily to us over the telephone telling us what he had been doing and asking after his sister. We all agreed that if Zoe was still alive on Wednesday then Oliver would come up with my parents to see her.
Around this time I decided that it would be nice if Keith and I could spend Monday night beside Zoe on PICU. It might be her last night alive if she died soon after coming off the ventilator. We decided to ask the staff.
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Monday morning arrived and Keith and I got ourselves ready to spend what was possibly our daughter's last day with her. As we washed and dressed at Rainbow House we listened to the Twinkle Twinkle Little Star tape that I had borrowed from PICU. Two of the songs were very poignant -‘Twinkle Twinkle Little Star’ and ‘I'm a Fluffy Little Cloud.’ I packed an overnight bag for us both in case we were allowed to stay the night at the hospital.
We arrived to find a sleeping Zoe. I wanted the day to last forever, but it started to go by alarmingly fast. Lots of things were happening, each taking up valuable seconds of our dying daughter’s time, but each of them necessary. Mr Pierro and his team arrived to check Zoe's progress following her surgery. He didn't know that a diagnosis had been reached over the weekend, and was quickly taken aside and told in hushed tones. He came up to Keith and I and said how very sorry he was. He had been correct all along in telling us that Zoe's problem was probably not solely reflux.
Next, Breda, one of the PICU Sisters came over and explained that soon the doctors would need to take a biopsy of Zoe's skin. This was to determine which exact enzyme was missing from Zoe, which would help with pre-natal testing in any future children Keith and I might have. We were advised not to watch as it may upset us and Zoe may be distressed. We didn't want her to feel that we had deserted her though, so, Keith stayed with her and I went to the Parents’ Room. As it happened she didn't murmur when a small piece of skin was cut from her arm. Our brave daughter had been uncomplaining in just about every procedure that she had to endure throughout her short life.
Soon after this Breda explained that Zoe would soon be moved to a cubicle which would give us all some privacy. She was keen to stress that we were not being put into a side room ‘out of the way’ and that Zoe's care would continue to be carried out in the same impeccable manner as it had been all along (of which we were in no doubt). Breda also told us that we would not be thrown off of the PICU just because nothing further could be done for Zoe - we could stay as long as we wanted or needed to. She added that any special wishes that we had would be taken into consideration, we only had to ask.
By the time we had helped to move Zoe and all her equipment and paraphernalia into the cubicle in front of the nurses' station it was 2 o'clock. Time seemed to be galloping by and I wanted to make the clock stand still and savour these last moments with Zoe. It was odd to think that this time tomorrow Keith and I might not be there and the cot could be empty.
As we sat on the high chairs beside our daughter it slowly dawned on me that Dr Collins had been correct in her assumptions all along. It was astounding that she had known from that first conversation that we had had with her that Zoe had a progressive neurological disorder and that we would "probably not be taking her home." She was an amazing lady.
The duty vicar then called in to see us. He had been asked to come by the nursing staff following our request to have Zoe baptised. He chatted with us for a while and then, visibly moved by the circumstances, arranged to return at 5.30 pm to baptise our daughter. Zoe's nurse that day was Shelagh who was very kind and unassuming. She stayed with us while Zoe was Christened and she took several photographs.
Another subject that Keith and I had talked about at the bistro the previous Saturday night was the possibility of organ donation. Much as I couldn't bear to think of Zoe being tampered with after her death I definitely wanted to help others - to give others the chance of happiness even if we, ourselves, couldn't have it. After all, if someone had walked in the room at that moment and said that a particular organ was available that would make Zoe completely well again then all our dreams would have come true in a second. We asked the staff if any of Zoe's organs could be used after she had died. They weren't sure but they would ask the Transplant Co-ordinator and let us know. (A few hours later we were told that, unfortunately, none of Zoe’s organs could be used.)
I had wanted so much for that day to last for ever, but now it was nearly over. Zoe's nurse, Shelagh, would soon be going off duty and the night shift would take over. Gail was to be Zoe's nurse for her last night on the ventilator. Keith and I had asked if we could stay with Zoe and a portable, fold-up bed had been found for us to sleep on. Nothing seemed too much trouble for the staff, and as Breda, the Sister, told us, "You only get the one chance to do everything right in these circumstances - there should be nothing that should go wrong and no regrets."
At 8 pm Shelagh verbally handed Zoe’s details over to Gail before going home. She was returning the following day, giving up her day off because she wanted to look after Zoe when she came off the ventilator at 10 o'clock in the morning. We were very grateful to her, and continually amazed at the constant dedication of all the staff.
We had heard Breda spend much of that Monday morning on the telephone ringing round all the staff trying to get someone to work the night shift as one of the nurses had gone off sick. She was unsuccessful in finding anyone free to work so she had no choice but to cover both the day and night shifts herself. She left around 8 pm for a couple of hours sleep.
At around 10 o'clock that night Zoe began to cough. She coughed harder and harder, unable to stop, and her ventilator tube slipped a little way out of her nose. About 2 cms of the tube was protruding so I quickly tried to push it back in, but she coughed even harder and the whole tube suddenly slipped completely out of her nose. She was now off the ventilator. She coughed again, went blue and stopped breathing immediately. I expected everyone to stand back and do nothing. Instead Gail called for the Crash Trolley which I ran out to find. Meanwhile, a doctor dashed into the room and began resuscitation by bagging her and giving oxygen. Zoe was rigid with pinpoint pupils staring straight ahead. It was all such a shock for everyone, so sudden. We had been confident in the fact that Zoe was safe on the ventilator for one last night, but, once again, she had called the shots and decided otherwise.
While the doctor was bagging Zoe he asked us, "Mr and Mrs North, events this evening haven't quite gone to plan. I can now do whatever you wish me to. I can re-intubate and ventilate Zoe so that you have the rest of the night with her, as you planned, and then we will take her off the ventilator in the morning. Or we can just let her slip quietly away now. Take your time and think it over. I will carry on bagging her until you decide. I will do whatever you wish." Keith and I looked at each other and we both knew that it would selfish and unfair of us to have Zoe re-intubated and ventilated just for our own sakes, only for her to have to go through all this again the next morning at 10 o’clock. We both said that she should be allowed to slip quietly away with peace and dignity.
The young doctor removed the mask from Zoe's face. She was breathing faintly and irregularly and she looked a terrible colour. She was lying on her back, naked, apart from her nappy, and sideways in her cot. The doctor straightened her up and pulled a colourful blanket up over her. Then everyone left Keith and I alone with our daughter to say goodbye. We talked to her, stroked her head and rubbed her back. Gradually her breathing got stronger and her colour returned to normal. She was sleeping peacefully! We had her back, but for how long?
Gail returned to the room to watch over Zoe while she slept peacefully. She was now devoid of any tubes coming from her face (only her gastrostomy tube protruded from her abdomen). All the wires of the heart monitor and oxygen saturation probe had been removed so that Zoe could sleep peacefully without the constant bleeping of the machinery. Keith and I took turns to lie on the bed behind Zoe's cot, whilst one of us always sat beside her. Who-ever was resting on the bed would jump up at the slightest sound coming from Zoe, fearing that the whole process was about to be repeated.
At 2 am Zoe coughed again and her breathing ceased. Her body was rigid and blue with staring eyes. Keith and I were at her side in a second. We didn't give her any oxygen or bag her as there was little point in trying to prolong her life any longer. Instead we stroked her lifeless body and Keith whispered in her ear, "Goodbye Sweetheart. Go to Pops - he will look after you. Go and find him." She was still, and I thought to myself how little time we had had with her after all - she had only been off the ventilator for four hours and already she was gone. No more good days, or smiles.
A little sigh came from her mouth and Keith nudged me, "Look!" he said. "No", I said, "it's only the air expelling from her lungs." Gail nodded. "Goodbye darling, I love you," I whispered, kissing her forehead. Another breath, I watched her, not daring to believe what I was seeing. Then another and another. She had started up again! Our little daughter was still with us. We laughed and cried, and Zoe, yet again, slept peacefully!
From then on neither Keith, nor I, could relax. We sat up for the rest of the night, watching and waiting. Gail had decided to reconnect the heart monitor and the saturation probe on Zoe's foot. Maybe we would be able to predict another episode and be forewarned?
We didn't have to wait long. At 6 am Zoe gave a small cough and desaturated completely. She was lifeless, blue and not breathing. Keith and I were once again saying "goodbye" and I remember telling her, "Please go, Sweetheart, you can't keep doing this - you must go. Pops will look after you. Take care. We love you." She was still not breathing. "She's gone," I said, "She's REALLY gone this time." I bent to kiss her, and she took a breath. It was absolute torture - to totally believe that she was dead, and then suddenly she was alive again. Words cannot describe the utter despair and then the elation that we felt.
But this time she didn't regain normal breathing and sleep peacefully. Her breathing remained very laboured and she began whimpering as if in pain. I knew she couldn't be with us for much longer. Breda came in to help Gail, who looked totally perplexed by the whole situation. We were asked if we wanted to cuddle Zoe, which, of course, we did. In came that dreaded two-seater settee and Keith and I nursed our daughter between us. I kept reassuring Zoe that she was doing just ‘fine’, and that Mummy and Daddy were with her and we wouldn't leave her alone. She looked so so poorly lying there in our arms. Everyone went out of the room again, closing the door, and leaving us alone with our dying daughter. We stroked her, talked to her, and took turns to hold her. Every now and then Gail would pop her head around the door to check we were okay.
After half an hour of listening to Zoe pitifully whimpering I could stand it no longer. She may be dying, but she should not be suffering. I asked if she could have something as she must surely be in pain. I asked about some morphine for her. "Yes," I was told, she could have some morphine, but did I realise what this could do to her breathing? Yes, I did, but I maintained that she shouldn't suffer - if the morphine took away her pain but made her breathing finally cease, then so be it. She could not go on like this - and nor could we.
One milligram of morphine was given to Zoe intramuscularly. It made her eyes, which were open, look in opposite directions. It was horrible to watch. We carried on talking to her and cuddling her but half an hour later we were still in the same predicament. The morphine, it seemed, hadn't had any effect. Dr Tasker came in the room to see us, and he suggested a sedative called Triclofos which would hopefully get Zoe off to sleep. We all agreed it was worth a try, so it was administered via the gastrostomy tube, along with a feed.
It was now 9 o'clock in the morning and both Breda and Gail, who were on night duty, should have left an hour earlier. Breda had now worked nearly 25 hours. With tears in her eyes she came and told us that she really didn't want to leave us but she had to. She doubted very much that she would see us there when she arrived for duty that night as we would probably all be gone from the hospital. Gail left soon afterwards and Shelagh took over Zoe's care for the day.
Within a short time (about half an hour) Zoe closed her eyes and went off to sleep. The Triclofos may have finally taken effect, or she was so exhausted that she naturally fell asleep, I’m not sure which. We laid her back on her cot to rest and Keith and I quickly took turns to go and wash and change in the shower-room. We had now been constantly alert for the last 28 hours.
Then we sat on high chairs either side of Zoe, in the quiet, curtain drawn cubicle. Dr Collins came and sat with us for a while. There was no need for her to speak - there was nothing more to say, she just sat holding Zoe's hand and looking at her. It was very touching that this very busy lady had taken time out of her day to be with us - she shared our sorrow and hadn't forgotten us. As she left she told us to call her if we needed her for anything at all.
Lorraine, the Play Specialist from Churchill Ward was very brave and came down to see us. The staff asked us, each time a visitor appeared for us at the nurses' station, if we would like to see them. We couldn't refuse Lorraine - it must have taken such courage for her to come down. She was a 19 year old girl and this was her first job as a Play Specialist in a hospital. The whole environment was completely alien to her. She was so nervous with us that morning that she said everything she wished she hadn't, and said nothing that she wished she had. What is more, in her panic she kept referring to Zoe as Sophie. Poor Lorraine! We all ended up laughing at the whole conversation. She told us how terrified she had been all morning just knowing that she would be coming down to see us, but she had so much wanted to come to let us know that she cared. She began to cry and hurriedly left, leaving with us a touching card signed by all the staff of Churchill Ward.
Tess (also from Churchill Ward) came to see us later that afternoon. She said that we would be welcome back on the ward at any time. We both thanked her, but said that we felt there would be no need as Zoe would soon slip away. Her breathing had become very quick now, and we sat watching her constantly, just waiting for that breathing to stop.
But the Triclofos seemed to be working and Zoe slept and slept. Where as in the night she had stopped breathing every four hours, since she had started the Triclofos she hadn't stopped breathing at all. I figured that maybe the sedative relaxed her and her muscles enough to prevent the bronchospasm occurring. If this was the case then I wanted continuous Triclofos to be given to prevent such traumatic episodes.
Later the vicar who had Christened Zoe arrived to see how we were getting on. He sat with us a while too. Zoe slept on, oblivious to everything. We watched her - waiting for her to quietly slip away any second.
Shelagh suggested, about 6 pm, that Keith and I go to the canteen and get some supper. Neither of us could bear to go in case we missed anything, so Keith quickly went over and brought back some spagetti bolognese for us. We didn't think we were hungry, but we managed to eat it all!
To our amazement, and delight, that night, Gail asked us if we would both like to sleep next to Zoe. She explained that she would move all the equipment out of the room, and place two mattresses in the middle of the floor. Zoe could then lie in between Keith and I on the ‘bed’. We thought that this was a lovely idea and we helped Gail move everything out and make our bed up. Then we gently lifted Zoe out of her cot and laid her in the middle. I had washed her earlier and dressed her in a smart pink sleepsuit. She looked beautiful lying asleep on the white sheets. She was still attached, by the foot probe, to the oxygen saturation monitor which was constantly reading about 70%.
About 11 pm we bedded down cuddling our daughter between us. She had periods when she was awake and looking at us, intently sucking on her two favourite fingers. She looked, but she never smiled. Most of the time she slept peacefully.
We all drifted off to sleep, but each time Zoe moved her foot the oxygen saturation monitor alarmed and the Reset button high up on the computer screen would need pressing to stop the alarm. After a while we decided that this machine was more trouble than it was worth so we disconnected it. If Zoe was to slip quietly away when we were all asleep then so be it - as it was we were jumping up every 20 minutes to turn the alarm off.
As Zoe was still being fed hourly Gail watched over us all. If we were awake then we fed her, but if we were sleeping then Gail climbed over us and fed Zoe. Feeding involved measuring the required amount of milk and pouring it down the gastrostomy tube so Zoe slept on regardless. It was all very easy provided she didn't cough and shoot the whole lot back out of the tube!
Gail told us during one of our chats that night that she was amazed to see us still there. She told us that she had never witnessed anything like the events of the previous night when Zoe died and then spontaneously returned. She told us that at one point she was watching the monitor screen (something I never thought to look at) and she had seen Zoe's heart rate drop down from 110 beats per minute (bpm) to 80 bpm to 60 bpm to 40 bpm and then finally to 20 bpm. Then, to her amazement, it slowly climbed back up to 110 bpm. She said that in all her years of nursing she had never seen anything like it before. This was reassuring to hear as I too, in my 16 years of nursing, had never experienced anything like this. It had been absolutely incredible.
When we awoke it was Wednesday 8th March. I quickly washed and changed, then rang my parents to tell them that Zoe had made it through the night. There had been a light covering of snow in Haywards Heath overnight but the main roads were clear so they would be setting off to see us soon, and bringing Oliver.
We reinstated Zoe's cot in the room and washed and changed her. She now hadn't stopped breathing for 24 hours.
As I walked past the nurses' station later that morning I overheard Breda on the telephone explaining to someone that they were full and couldn't take a particular sick child at present. I went back to Keith and told him. We both felt that now the time had come for Zoe to move from PICU. The staff had all been very keen for us not to feel pushed out, or that Zoe was a hopeless case, which we didn't feel at all. It seemed logical to us that if all the highly technical equipment which had helped our daughter for so long no longer could, then another child and it’s family should have the chance that we have had. The next time that we saw Breda we asked her if we could move to Churchill Ward. She asked us if we were sure, and then set the wheels in motion for a 2 o'clock transfer.
My parents arrived with Oliver about 11 am. We all stayed with Zoe for a while then took turns to take Oliver to the Play Room. When Oliver and I were alone I quietly told him that soon Zoe was definitely going to live in the stars and that we wouldn't be able to see her again after she had gone. He asked, "When?", and I told him that no-one knew when but it would probably be quite soon.
I warned him that he might see Grandma and Grandad crying, and that it was okay for him to cry too as it would be very sad. I asked him to help Grandad look after Grandma. He cried a little and said that he didn't want Zoe to live in the stars and I told him that none of us did but she was very ill and nothing that anyone could do could make her better. Subdued, he came back with me to Zoe's room and didn’t stop looking at her.
That afternoon we packed up and said our goodbyes, and then helped move Zoe and all her paraphernalia through the corridors to Churchill Ward. Tess was on duty and very pleased to see us. Dad, Keith and Oliver quickly went back to Rainbow House to pack up some of our belongings ready to take home and, also, to collect some more clothes. I spent a very nerve-racking hour with mum watching Zoe and willing her not to do anything until Keith got back. Luckily she slept soundly.
The time came for my parents and Oliver to leave and they took turns to sit down and hold their granddaughter in their arms for what was possibly the last time. She looked so very ill, sucking madly on her fingers and looking up at who-ever was holding her. I had never seen her looking so poorly. Oliver then sat in the armchair and held his sister too. She spent a long time gazing into his eyes. When she was back in her cot again and everyone was about to leave Oliver said he wanted to say goodbye one more time, so he climbed up and lay his face on the mattress next to Zoe's. He put his arm around her little body and said, "Goodnight Zoe."
That night we again bedded down with two mattresses on the floor and Zoe between us. As Tess went off duty she came to say goodbye and told us to ‘take it easy with Jo’, the young nurse who had often specialed Zoe on Churchill Ward. Jo had just returned from a holiday in Gran Canaria and, at that night’s handover, had been in tears when she had learnt of Zoe's diagnosis and poor prognosis.
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We all slept quite well that night, managing Zoe's feeds ourselves, and she awoke, still looking very poorly, to yet another day - Thursday 9th March.
I went off to the ward kitchen make Keith and myself a cup of tea. One of the other mothers asked me how "our little one was doing?". I told her that there was nothing more they could do for her, and that we were waiting for her to die. It sounded so strange hearing myself say those words. So unreal. She tearfully told me that she would be thinking of us, and hurried out.
Dr Collins came to see us again. She emphasised that we could still change our minds - if we decided to move Zoe nearer home it could all be arranged, but we were welcome to stay on Churchill as long as we wanted.
Over the last few hours Keith and I had been toying with the idea of transferring Zoe back to our local hospital. She had now been off the ventilator for three days, and she hadn't stopped breathing for two of those days, and, although poorly, she was still very much alive. Family and friends were just so far away, and now we were isolated in London for no particular reason. Nothing was being done here that couldn't be done elsewhere.
At 5 pm that evening the decision was made for us by little Zoe. Keith and I were both giving her a feed. She was sucking her fingers and looking at us as we chatted to her and poured the milk down the tube into her stomach. Suddenly she took her fingers out of her mouth and gave us the most enormous smile, the first smile for over a week! We laughed and cried. "That's it, little girl. We are taking you HOME!" we told her.
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The following day, Friday, all the arrangements were made to transport Zoe, Keith and I back to Southlands Hospital in Shoreham, Sussex. This would be a short stepping stone to home to re-acquaint ourselves with the nursing and medical staff in case we should need them in the days or weeks to come, and to accumulate all the equipment we would need to nurse Zoe.
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Now that Zoe was smiling and looking slightly better we decided we would take her home and enjoy whatever time we had left with her. Our plan was to try and live as normal life as possible with her, have Oliver home with us too, and be a family once more for as long as we could. We would try and take her out in her pram to the park or beach, and not sit indoors and wait for the inevitable. As it happened this was not going to be as easy as we thought!
The weekend was spent in our little cubicle on Churchill Ward organising and planning our journey home. I made lists of things that we had to do before we left, questions we had yet to ask, equipment we would need to go home with, and whom we had to write to. I had asked my mum to buy gifts for everyone who had been so kind to us at Great Ormond Street - the PICU staff, the Churchill Ward staff, the Play Specialists, the Play Centre staff, Dr Collins and Rose. I had also asked mum to buy us a copy of the Twinkle Twinkle Little Star tape so that we could play it at Zoe's funeral.
We had now spent nearly a week watching Zoe. We had sat or slept in our clothes for six days and six nights, only leaving the room briefly to wash, change or buy food. We were already exhausted and going home was a daunting prospect, but it was what we both wanted under the circumstances - to take our daughter home for one last time.
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Gail, from PICU popped in to see us on Saturday afternoon to see how we were getting on. The constant caring environment at Great Ormond Street never ceased to amaze us. ‘Out of sight’ certainly didn't mean ‘out of mind’. The next day, Sunday, a tall, smart, elegantly dressed lady rushed into the ward looking for us. We realised it was Breda, the Sister from PICU on her day off and going with her husband to a family Christening. She just had to see Zoe one last time. She hugged us both, and then gave Zoe a lovely cuddle and a kiss goodbye before dashing on her way. I shall never forget her kindness as long as I live.
Mum and Dad came up on the Sunday and, for the first time in a week, I left Zoe's side and they and I went back to Rainbow House to empty our room. Keith found out how nerve-racking it was to be left alone with Zoe!
Suddenly it was Monday morning and the ambulance crew were waiting for us to say our goodbyes. There were lots of hugs and tears all around. Lucy, who had been off duty since Zoe's first cardiac arrest had just walked back on to the ward, and Jo and Tess were there too. Steve, the Senior Staff Nurse, was accompanying us to Southlands in the ambulance. When all the thanking and goodbyes were complete we finally all made it to the ambulance with Keith carrying a sleeping Zoe. She was sedated with Triclofos for the journey.
For all my worrying she slept peacefully for the entire journey in Keith's arms. As the ambulance pulled in at the entrance to Southlands Hospital she woke up, on cue, and looked around.
Rainbow Ward was frantically busy when we arrived. We were allocated a temporary cot until a cubicle was available. We laid Zoe in the cot and she began to cry and wouldn't stop. All the other mothers in the bay were looking at us, probably being friendly, I'm sure, but I couldn't handle their stares and thought one was about to come over and start chatting to us. I wasn’t prepared for this yet, so I quickly drew the curtains around Zoe's cot and, as Zoe began to cough, Keith and I sucked out her mouth as she couldn't swallow the secretions that she coughed up. The more Zoe cried and coughed the more uptight I became. Had we done the right thing in moving her? We knew for sure we just had to get her home as soon as it could possibly be arranged. After all those months in hospital there was no place like home.
Whilst we were waiting for our cubicle to be ready the first of our visitors arrived, my brother Richard, and his wife Hilary. They helped us move into the cubicle when it was ready. Hilary was visibly upset, and whilst Keith and I sucked out a coughing Zoe, she stood at the window with tears in her eyes. This time there were no words of comfort that I could offer. Zoe was soon to die. What can anyone say? It all seems so unfair, a little baby who hasn't even had a chance. However, my thoughts at that time were that we must not dwell on the dying aspect. Zoe was still alive at the moment and all our energies would be channelled into making her comfortable, happy and content. She was still with us and we would make the best of it. It would have seemed a terrible waste of her last few days / weeks if we had miserably sat around crying.
That evening Simon, Rachel, and Peg came to visit and brought us a Chinese take-away. Keith and I were starving as we hadn't eaten all day. It was nice to be back in familiar surroundings, and we felt very ‘at home’ with all the staff who kept constantly popping in to see us.
The next day, Tuesday, was spent accumulating all the equipment we would need at home. Two bin liners in the room were slowly being filled with packets of gauze, spare gastrostomy tube parts, sachets of cleaning fluids, gallipots, syringes etc.
Sister Upton popped in to see us frequently. She is a very familiar face as she has seen us through both Oliver and Zoe's post-natal periods, and I also remembered her from my training days. I could talk to her easily and we had many chats. Another very friendly face was Janet Tong's, the Manager of the Children's Ward. She is a tremendous worker, she really knuckles down and gets on with the job in hand, mucking in with the rest of them, which was an absolute pleasure to see.
My friend, Rhona, also came to see us and held Zoe for a while. Unfortunately the spiggot of Zoe's gastrostomy tube had, unbeknown to us, fallen out, so the last feed slowly seeped out all over Rhona's shirt and jeans! She didn't stay long after that!
That afternoon Kevin and Ingrid came to see us, and Dad arrived too. Oliver had developed a cough so he didn't come in but stayed in the car with Grandma. Mum and Dad had been over to our house to turn on the heating ready for our return home the next day. The only problem was, the heating system wasn't working. We decided to go ahead with the plans as we still had an electric fire in the lounge, and Keith would fix the system once we got there.
Tony and Louise visited us that evening and we chatted easily with them. Louise remarked on how well we seemed to be coping with the situation, as had many people. As I have said before, in such circumstances you just have to carry on - there is no choice, no alternative.
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On Wednesday 15th March we took our daughter home from hospital for the very last time. Keith had spent the morning driving around the area to find the part of the central heating boiler that we needed. Finally, at lunch time, he was successful and so arrived to load us all into the car. We set off for home around 3 o'clock. Keith drove and I held Zoe in my arms in the back of the car.
The journey usually took about 20 minutes, the sun was shining and it felt very strange to be part of the normal world again. Halfway home Zoe began to cry and whatever I did I just couldn't pacify her. She began to gag. Surely she was not going to die in the car on our way home? Keith stopped the car and we changed places. Zoe stopped crying once he held her, and the rest of the journey was completed uneventfully.
Being home felt very strange after all those weeks away. Zoe and I settled in the lounge with the electric fire on while Keith fixed the central heating system. Within an hour it was all working and the rooms were beginning to warm up. We telephoned Oliver at my parents house and he said he was having a lovely time. We planned to have him home at the end of the week, which gave us a couple of days to get ourselves organised with Zoe and into some sort of routine. We had boxes of food and cases of clothes still to unpack from London, all of Zoe's feeding equipment to sterilise and her feeds to be made up, and all her medication, feeding and dressing equipment to lay out in the appropriate rooms. We now had sole care of our daughter - there was no-one to call on quickly if we were worried and no-one to help deal with any crisis. We were totally alone, but very confident that we could cope.
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That evening I resumed my normal position in my armchair in the lounge in front of the television. I cuddled my baby daughter, asleep in my arms, and thought how wonderful it was to be home. It felt as though we had been away for years.
We had borrowed a portable suction machine from the GP's surgery and this lay on the floor with a blanket next to it to lay Zoe on if she needed secretions sucking out of her mouth.
We crawled into our own bed that night, exhausted, but happy. Zoe was finally home, for however long, and she was sleeping soundly in her carrycot beside our bed. All we needed now was our son home to be together as a family for one last time.
Zoe's care took up every minute of every day and night. She needed watching constantly because of her potential breathing problems, quick action suction whenever she coughed, hourly gastostromy feeds, various medications regularly throughout the day, mouth care because she couldn't swallow, PLUS all the usual baby washing and nappy changing procedures. It was exhausting - we grabbed an hour’s sleep in-between coughs and feeds at night, but we wouldn't have had it any other way. The energy came from somewhere and we kept going.
Oliver returned to us and he helped all that he could, pleased to be involved. He lay on the playmat next to Zoe continually making her smile and laugh. The two of them completely adored each other.
Our family and friends provided constant emotional and physical support. Many rang or visited, took Oliver out, or brought ready cooked meals around for us all to eat. It was all a great help.
I'm sure many people were worried about coming to see us. After all, what do you say to a family whose child is dying? How will they be? Many thoughts must have gone through each of their minds before they reached our house and we were very grateful to each and every one of them for coming.
Until you are actually in the position that we were, you cannot actually imagine what it could be like waiting for your child to die. And even then, I am sure, every individual is different in how they cope. Some would imagine that they would be constantly sitting around weeping at the despair of it all, but in reality this didn't happen at all. There was no time - there was so much to think about and do for Zoe, Oliver to wash, dress, feed, amuse and take to and fetch from playgroup, and a constant stream of welcome callers. Besides which, Zoe was still alive, and all the while that the blood was pumping around her little body I was happy. She was still our beautiful little girl and was looking to her mum, dad, and brother for comfort and total care. This she would get from us, day and night, until the very end.
Fleetingly, several times during that first week at home I wondered if the doctors could possibly have got it all wrong. Perhaps a mistake had been made and Zoe had some simpler condition that could easily be treated. But, in my heart of hearts I knew that we were on borrowed time and we were just lucky that she seemed so well.
Zoe loved to lie on her playmat on the floor in front of the television, sucking her two fingers and watching the moving colours on the screen. She would roll over, from side to side, and was, I believe, happy and in no pain. At night we sedated her with Triclofos which enabled us all to get the maximum sleep possible (although this was usually not more than 2 - 3 hours, often less!). However, it was always worth it just to see Zoe's smiling face the next day. She loved to be held sitting up on our knees so that she could see our faces. We would chatter to her and she would flutter her long eyelashes and her whole face would light up with a lovely smile. She also loved to listen to a Rock ' n ' Roll tape that we had. We would play it loud and Keith would dance around the room, with an upright Zoe held to his chest. She would laugh out loud and love every minute!
We took many photos at home, knowing that time was running out, and we tried to capture every precious moment on film. Many of the photos were of Oliver with his baby sister, lying together on the playmat, or cuddling up in bed. He wanted to be with her every minute that he was at home and would love to make her smile. "Look Mummy, isn't she pretty?", he would say over and over again, and "Aaah, that's a lovely smile." "We do love her, don't we Mummy?".
We had been at home for one week when Zoe stopped breathing for the first time. I was downstairs, about 9 o'clock in the morning, changing her nappy and washing her on the changing mat on the lounge floor when she gave a little cough and suddenly became completely lifeless without warning. Her little head rolled over to the side, and she was blue. Oliver had been beside me, helping, so I told him to quickly go and get Daddy. I shook Zoe gently, hoping for a response. There was none. Oliver returned saying that he couldn't find Daddy, so I screamed loudly for Keith and Oliver disappeared. Keith came and we tried to suction Zoe's airway, thinking that some mucus might be blocking it. After a while she took a breath, then another, and another. Her colour returned to normal - she was back, and she gave us a big smile to prove it!
Seconds later the phone rang. It was my friend Elaine but I couldn't speak much so I said I'd ring her later. I then found Oliver sitting on the stairs crying - frightened by my shouting and the events of the last 20 minutes. The poor boy was distraught, having heard the panic in my voice, and I vowed that whatever happened in the future we must always remain calm and involve Oliver so that he was helping. From that moment on he always stayed with us when there was a crisis, he would pass the suction tubing to us, turn on the suction machine, or get whichever parent was missing from the room whenever there was a problem.
The weather that year, in March, was sunny and fairly warm. We took Zoe out in the garden for some fresh air in the afternoons. She lay, wrapped in blankets, in her pram, the portable suction machine on the rack under the carrycot. One afternoon I dared to venture to the shops up the top of our road with Zoe in the pram, the suction machine underneath, and Oliver running along beside us. I had a long shopping list but gave up after the first item when Zoe began coughing. I quickly took off her blankets to see if she was changing colour, and the shop-keeper remarked, "Nasty cough, that. Terrible! Ought to get that seen to!". The thought of Zoe dying in that shop was more than I could bear, so I hurriedly left and ran home pushing the pram as fast as I could, with Oliver worried that we'd forgotten to do all the shopping. Zoe never left the house again.
After the first week Keith and I slept with Zoe in between us in our bed. We felt that it was more comforting for her to be near us, and it was easier for us to hear her breathing and detect any problems early. Any little sound from her would have us wide awake and ready with the suction machine on. She was developing a chest infection, which we knew would not be treated, and she was coughing up thick yellow/green sputum which she couldn't swallow. We were constantly alert all night. Oliver, feeling lonely on his own in his bedroom, had asked us a few nights previously if he could also sleep with us in our room. We didn't want him to feel left out, so we made him up a bed on the floor beside us. With five bedrooms we were now all crammed into one!
One morning, in the early hours, following suctioning Zoe and feeding her down the tube, we just couldn't get her to settle so I was pacing around the bedroom with her in my arms. I was surprised to see Oliver awake, in his made-up bed on the floor, and watching me. "Hello, Sweetheart. What are you doing awake?" I asked him. "Ummm, I'm picking daffodils," he cheekily replied!
On 1st April we had been home for 17 days. Zoe's condition was deteriorating rapidly and her episodes of stopping breathing were becoming more and more frequent. I wondered how much more her little heart could take. She had stopped breathing as soon as she had woken up that Saturday morning, and then did so another three times in the next two hours.
Keith dropped Oliver off at his mother's house and we cancelled all our visitors. We both lay on the floor with Zoe watching her poor little tormented body endure all this torture. We would say goodbye to her lifeless form time and time again, hold her hands, kiss her, then slowly the breaths would start up again. Much as her body wanted to go, her mind fought all the way to stay with us, and she came back from the brink time and time again.
It was the most draining emotional experience that I have ever experienced. To cry with utter despair and sadness looking at your daughter's blue, lifeless body, only to see her pink and breathing and smiling again five minutes later. The confusion, elation, relief, and above all, overwhelming sadness, because in your heart you know that the happiness is only temporary and very soon she will be gone for good.
For the rest of that day Zoe slept, sedated with Triclofos.
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Occasionally, during our time at home, Zoe would become distressed and cry and cry inconsolably, as if she were in pain. Usually, walking around with her in our arms would settle her, and we would take turns to walk miles with her around the house. Very occasionally this would not work and she would give a continuous pained cry, which was very distressing to hear. I was adamant that Zoe should never have to suffer, and that she should not have to be upset during the short time that she had left to live. To be caring for a dying child is bad enough, but an inconsolably crying dying child is too much for anyone to bear. It is unfair on the child, and those that have to watch. I maintained that if sleep eased her suffering then she must be sedated more - but only if there was no other way of consoling her. For this purpose our GP prescribed some Vallergan to give her in addition to the Triclofos. Luckily we only had to use this combination about four times during Zoe's time at home.
Zoe's chest infection was now taking hold and she was very sleepy. She had also begun to have mild fits where she would arch her back and jerk rhythmically for a few seconds. Her overall condition was deteriorating fast, and we knew that we couldn't have much longer left with her. Every evening we would kiss her goodnight and never know if we would see her in the morning. She was too poorly to smile now, and she would just look sadly at us.
We wanted time alone so we could concentrate on Zoe for her last few days so we asked various friends who had arranged to visit us not to. As Breda, the Sister from Great Ormond Street, had said, "You only have one chance at this, and you must get it right the first time." We channelled our final efforts into caring for our dying baby.
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On Wednesday 5th April Zoe seemed a little brighter. She was more alert, and didn't cough quite as much. As she was slightly better we agreed that our friends, Tony and Louise could visit that evening. They came for about an hour, during which time Zoe gave one of her beaming smiles, the first for several days. We thought she was over the worst of this crisis.
The next morning, Thursday 6th April, Zoe woke, as usual, around 7 o'clock. I carried her downstairs and began the usual two hourly ritual of washing and changing her, swabbing out her mouth, cleaning her eyes and dressing her gastrostomy site. She smiled and watched the television as I did so. By 11 o'clock she was sleeping soundly on the playmat on the lounge floor.
My parents were due down that morning, but Dad arrived alone - Mum had a bad throat infection and was staying in bed. Dad and I were sitting chatting in the lounge while Keith went to collect Oliver from playgroup. As I heard Keith drive up the road Zoe gave a little cough and stopped breathing. It was a horrible feeling - Keith and I had always been together whenever she had stopped breathing before, and now, if she didn't pull through this one, Keith would not be with her when she died. I picked Zoe up - no response, and still no breaths. She was blue with her tongue protruding from her mouth. I tried to suction her but it was no use - she still didn't take a breath. A minute, maybe more, went by. "She's gone Dad," I said. He held her little hand and said goodbye. Then he said, "Look!" as Zoe took a breath, and then another. She struggled on until Keith finally arrived back, but it wasn't long before she stopped again, and again.
Keith and I stayed on the floor with Zoe for about an hour, while Dad read stories to Oliver on the settee. When Zoe stopped breathing for the fourth time Keith and I waited several minutes until we were sure she was gone before we called Oliver over to tell him. As Oliver walked across the room Zoe started breathing again. It was like a nightmare that could not possibly be true, and had I not witnessed it - I would never have believed it. My dad was the only other person, apart from Keith, myself and the medical staff, to see Zoe having one of these episodes.
Finally Zoe fell into an exhausted sleep and we lay her on blankets on the floor. Keith and I lay either side of her, listening to her laboured breathing. We decided it would be a good idea for Oliver to go back home with my dad so that we could concentrate all our attention on Zoe. I packed an overnight bag for Oliver and he said a special goodbye to his sister before happily going off with Grandad.
Keith and I spent the rest of the afternoon and evening beside a sedated Zoe. By late evening her breathing had returned to normal and she slept peacefully. At 9.30 I rang my Dad to see how Oliver was. He had had a good tea, a bath, and was fast asleep in bed. I told Dad that Zoe was sleeping soundly and had had no further episodes.
However, at 10 o'clock she did stop breathing for a short time but returned to us fairly quickly. The episode woke her up, so I took the opportunity to wash and change her. I washed her pale, exhausted, limp body all over, and Keith dried her. I changed her nappy, and put on the last one that we had. I made a mental note to remember to buy some more first thing in the morning. I dressed her in a pale yellow sleepsuit and settled her down on the playmat for the night. We had all taken to sleeping downstairs on the lounge floor in sleeping bags for the last few nights as it seemed that the change of air up in our bedroom made Zoe cough even more.
Zoe was sleeping peacefully. At 11.15 pm she gave a small cough and, as we watched, the life slowly ebbed from her body, and it didn’t return. She had lost her brave fight to stay with us and had quietly slipped away as we held both her hands.
With a shocked numbness we took turns to cradle her in our arms. We talked to her, telling her of how we would miss her, and wondering out loud what her brother would do now without her. We told her how brave she had been, and how proud we were of her. We sat for hours cuddling her and talking to her. I held her upright, against my chest, with her little head resting on my left shoulder, something I had been unable to do when she was alive as her neck would not allow her head forward.
Unbelievably, it was a beautiful although incredibly sad night. Given that we couldn't change the final outcome, all of the contributing factors were as we would have chosen them. Zoe died at home, with both Keith and I at her side. There was no-one else around, and, being late at night, no phone ringing or callers at the door. We then had a final night alone with our daughter before we had to face the world. We knew we had ‘done it right and with no regrets.’
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That night I lay in bed with Zoe’s body next to mine. She lay on her side, facing me, and I held both her hands. There was no noise anywhere - no sound of her breathing or coughing, no suction machine, no Oliver breathing heavily in his sleep. Just silence and stillness. Absolute silence.
The memories of that night are very special to me - it was the last I would ever spend with my beloved daughter. I dozed in and out of sleep, and each time I awoke I was looking at Zoe's pale, but peaceful, face. The night gave me time to gather my thoughts and take in the fact that she had really gone. It was strange knowing that nobody else knew.
Early the next morning we began the dreadful task of ringing family and friends before they left for work. It was very difficult to actually say the words, but it had to be done time and time again.
I rang my dad and told him, then asked to speak to Oliver. Oliver told me he was having a lovely time. He had just had breakfast, and was watching a video. Then he said, "How's Zoe, Mum?" "Zoe's in the stars now, Sweetheart" I told him. "Do you mean she's died, Mum?" "Yes, she has, Darling, her spirit is up in the stars, but her body is still here. Do you want to come and see her?”. "I'm coming, Mum." he said.
Our family began converging on the house. Keith's mum, Simon, Rachel and Kevin, being the nearest, came first. I had placed Zoe back in her carrycot and tucked her in with blankets. It looked as though she was sleeping peacefully. The carrycot rested on a chair in front of the patio door, and I sat next to the cot rubbing Zoe's back, as I had done for the past five months.
That morning I drank tea, ate toast, spoke on the phone, answered the door, and, somehow functioned, although I felt far from normal. It all felt so unreal to be sitting talking while our dead baby was lying in her carrycot beside us. I couldn't work out what else it was that we should be doing, so we all carried on. It felt bizarre that I was so calm after such a major catastrophe, but I suppose we were numb. The real pain was to come in the weeks, months, and even years to follow.
My parents arrived with my brother and Oliver. Oliver was excited to see all his aunties and uncles together, and he ran outside and started playing in his sandpit. I was very keen that he should see Zoe and realise that she wasn't breathing anymore and it was only the empty shell that was left, but, at first, he was reluctant. Maybe he was frightened of what he would see, I don't know, but eventually in his own time he came in and leant over the side of the carrycot and kissed his sister for the very last time. He commented on how ‘wet’ she felt as he wiped his mouth with his sleeve. She was, by now, icy cold and, therefore, felt wet to him. He ran back outside and played football with his grandad and uncles. The questions came later.
I was told it was lunch time, although I felt no hunger, and the Mums busied themselves in the kitchen warming soup for everyone to eat. We all sat around the dining room table and had some lunch. Keith and I found it very strange to sit and eat a meal without walking around with, or holding, Zoe. It felt as if part of us was missing.
The vicar came to say how sorry he was, as did our GP. They didn't have to say much, there wasn't much to say, just the fact that they came was enough. Then, after lunch, Tony and his colleague came to collect Zoe. We sat quietly and discussed the funeral, and then came the saddest part of all - taking our daughter, in her carrycot, out to the waiting car, handing her over, and watching her be driven down the road, away from us forever. I felt desolate, frantically waving, tears streaming down my face, until I could no longer see the car in the distance.
That evening, after everyone else had gone home and it was dark, Keith and I took Oliver outside into the garden. We let him choose Zoe's star. He chose the biggest and the brightest star in the whole sky, blew her a kiss, and said, "Goodnight Zoe".
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The following morning there was nothing for me to carry downstairs, and nothing to do when I got there. All I felt was emptiness and a lack of purpose. Zoe's care had taken up 24 hours of every single day for several months, and now, suddenly, we had absolutely nothing to do. The house seemed very very quiet, still and very very empty.
The cards, letters and flowers then began arriving in earnest. Bunches, bouquets and baskets of flowers were being delivered from family and friends near and far. All contained simple messages about our beautiful little girl. She seemed to have touched so many peoples' lives during her short stay with us. We received over a hundred cards and letters from people, many of whom were close to us, and some we hardly knew. It was very touching that so many people were thinking of us at this very sad time.
One friend, Claire, sent us a lovely poem. The words I find very moving, even though I no longer have any belief in any sort of God. The poem reads :-
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We spent the next few days organising everything that is necessary following a death, and trying to keep ourselves busy. In reality there was a tremendous amount to do, but it felt like there was just nothing to do anymore. The house seemed so empty, and even with a lot of noise going on - it still seemed quiet. A huge part of our lives was now missing and we had a lot of adjusting to do. Keith threw himself into re-arranging the garden. He began to dig an allotment for Oliver so he could begin growing vegetables. I busied myself in the house, and continually answered the telephone and doorbell.
We also had the funeral to think about. The date was set for Thursday 13th April at 11.20 am. We wanted a simple service at the crematorium, and we asked our local vicar, who had visited as a friend since Zoe had been ill, to conduct the service. We didn't want any hymns (only nursery rhymes) or anything too religious - just a beautiful farewell for our beautiful child.
Unexpectedly for me, our request to have Zoe visible at the funeral apparently caused quite a stir at the undertakers. This had never been requested before, and therefore they had to make various enquiries before it could be agreed upon. In no time at all it was all sorted, and yes, we could have Zoe in an open coffin but certain rules of the land must also be adhered to before, during and after the service. These included having the body covered for the journey in the hearse to the crematorium (obviously so as not to upset onlookers in the streets) and the outside doors of the crematorium, once we were inside, be shut, while Zoe's face was uncovered.
In a funny sort of way I was looking forward to the funeral. It gave us something to plan for, and it helped a little to fill the void that Zoe's death had left us in. It would be the last thing that we would ever do for our daughter. I wanted it to be absolutely perfect. And it was.
One thing I didn't want was for people to feel that they HAD to attend. I only wanted those family and friends to go who felt that they could. If it was to be a huge ordeal for them then I would rather they said and didn't go. Anyone could say their own farewell to Zoe where ever they were, they didn't have to go to the funeral to do so. Having said that, we were delighted to find the crematorium packed with people that day, and about 70 - 80 people attended. We decided, after lengthy discussions, that Oliver should not go. We felt that he was too young, and that it would greatly distress him to see everyone he knew so upset. He had said his special goodbye to Zoe at home several days earlier, so on the morning of the funeral he went to the park with my mother.
As Oliver was not attending the funeral we felt it would be unfair if his cousins or any other children went. He would have been extremely upset if he had found out in later years that other children had been there and he had not, so Keith and I asked that no other children be present.
We also asked that, if people did not want to send flowers, but wished to make a donation this would be to the Childrens’ Ward of our local hospital, Southlands. Zoe was born there, and was cared for there when she first became ill. We hoped that some other children could benefit from any money received. Several hundred pounds was donated.
For our part, Keith, Oliver and I had a spray of flowers made for Zoe in the shape of a large white star. I asked Oliver what he would like to say to his sister. He said, "To my Zo Zo. Goodnight little star. Love Oliver." This is what we wrote on his card.
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It was a beautiful sunny day when Keith and I walked up the slope to the chapel on the morning of Zoe's funeral. Inside the packed chapel, with the doors closed, we uncovered our daughter. She looked peaceful and serene. She was dressed in the North family Christening robe, and lay on her side with her hands clasped together by her mouth. We each took a handle of her Moses basket and carried her, very proudly, inside. Music played...
We placed the Moses basket at the front of the chapel and took our places. The vicar, Father Keith Woods, spoke to everyone on our behalf...
"At our baptism, we're often presented with a lighted candle, and bidden to "shine out" as a light in the world all our days.
Zoe's baptism candle, here, "shines out" as a little light of hope and joy for us today, even in the darkest of our grief and sorrow: for in her short life, Zoe has touched and blessed the hearts of so many, a bright light that will never be extinguished.
She was such a beautiful baby, with that most lovely and infectious smile, and those ever so long eyelashes: and who'll forget her special characteristic, insisting on putting anything from two to five fingers in her mouth: no mere "thumb sucker" was Zoe!
She has bought hope and joy to so many of us and, not least of all her big brother, Oliver.
You may have seen that lovely photo of Oliver kneeling down beside Zoe, their faces truly a picture, lit up with affection for one another. He simply doted on his little sister, to the extent, that anything he made or created at playgroup was always for Zoe; I'm afraid Mum and Dad never got a look in!
And although, of course, much time and attention had to be devoted to Zoe, there was never a hint of jealousy in Oliver.
And not only was Zoe a very beautiful and loveable baby, she was such a courageous and brave soul too: she really fought terribly hard against her awful and debilitating illness.
Keith and Cath waited a long time for Zoe to come along, she was so much wanted, and very special to them, and nothing can take away the heartbreaking pain they, and we all feel; but, yes, we can still give thanks today, for Zoe truly was a light of hope and joy, and we shall never forget her.
Keith and Cath have also asked me to thank on their behalf, their family and many friends, their chums and work colleagues, for all their very considerable help, support and concern; for all the visits made to where ever they've been with Zoe; for the letters and phone-calls; for meals provided; and for help in looking after Oliver.
And, of course, they're so grateful to the nurses and other staff at the hospitals they've been with Zoe; the Rainbow Ward at Southlands; the Nicholson Ward at the Royal Alexandra in Brighton; the Intensive Care and Churchill wards at Great Ormond Street; all the staff have been unstinting in their care, concern and love.
They would also specially thank today Tony Offer, a good friend who works for Dillistone, and who has continued to take care of Zoe when they no longer could.
In her adversity and helplessness, little Zoe was truly a light of hope and joy, engendering so much good will, compassion and love; so let us now commend her trustingly to our loving Lord, giving thanks that she's been brought, through her death, to that Eternal Light that is the full glory of Almighty God, in that place where there's no more pain nor crying, and where, one day, we shall be reunited with Zoe, and all our loved ones who've gone before us, together in our true home in Heaven."
Another song played….
Keith and I went up and said our final goodbye to Zoe and then we led everyone outside. Those who wished to went up and paid their last respects to our very own little Star........
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Type 2 Gaucher Disease
Neuronopathic Gaucher Disease
© Copyright 2000 Catherine North