Lucy Olivia Shevlin had been born at 16:16pm on Thursday 18th April 2002. She weighed 3lbs 7 1/2 oz and was absolutely gorgeous. Within a few minutes of Lucy being taken to special care, one of the doctors came over to us and said 'I don't know whether you saw your little girl then, but she has a cleft lip and palate, 6 fingers on each hand and 6 toes on one foot. She also has an umbilical hernia. This may indicate that she has Downs Syndrome or another chromosonal abnormaility and she is very poorly.' We were in shock. I had noticed when I saw her she had a cleft lip, but nothing else. I couldn't take it all in, I just prayed she would live. Me, James and my Mum just stayed in the delivery room. None of us knew what to say or what was happening. There was none of the exciting urge to phone family and friends announcing our safe arrival, because we didn't know where she was or what was going on. We were told we would be taken to see her once she was settled in Special Care, but I wanted to understand what was happening. I should have been cradling my newborn little girl in my arms. In the end, James and my mum went together to use the phone. I don't know what was said, I just know that James phoned Thomas first, as promised, to tell him he had a little sister. Apparently James could hear him jumping up and down saying 'its a sister, its a sister' before coming back and asking 'is that a boy or a girl?' What he said to the rest of the family I don't know. I don't know what he could have said. All we knew was that we had a daughter, she was in Special Care and that things were critical. After what seemed like forever, we were told we could finally go down to SCBU to see our little girl. I was taken down to Special Care in a wheelchair. James and my mum were walking behind me. My heart was pounding as we entered SCBU. All I could hear was the sound of beeping and I could feel the heat. It was so warm in there. I looked around and there must have been about 8 incubators in the intensive care part, all with tiny babies in. The wheelchair stopped at the end of one..........and there she was............ my little girl, Lucy Olivia. I remember thinking how beautiful, tiny and perfect she really was. She just looked so helpless lying there though, and I could tell she was poorly. There were wires all over her. And even though they were all just for the monitors, they frightened me so much. I just wanted to swoop her up and take her home with us. I was able to hold her very briefly, as a midwife stood at the side of me with oxygen, just incase. I looked down onto her beautiful little face. I loved her so much already and I just wanted to know that everything was going to be ok, but all they could tell us was that she was very poorly, which we knew. I scanned over her face, and her tiny hands and fingers and toes. I wanted to take everything in. After a short while, the heat got too much for me, and I felt sick, so I watched as she was placed back into the incubator, and then I was wheeled up to the ward, with nothing but a polaroid of my little girl. Up on the ward I was given my own room. I was relieved because as I was pushed through the ward to the room, I could see all the mums cradling their tiny newborns, as I should have been. Instead, mine was down in Specical Care clinging to life. James and my mum stayed with me a little while, but in the end they had to go home. I stayed in my bed, staring at my picture and thinking. I knew that no matter what was wrong with Lucy, no matter what problems she faced, I didn't care. I loved her unconditionally and I would do ANYTHING for her, as long as she lived. I never slept a wink that night. I just lay there holding Lucy's picture to my chest. It was the closest I could get to having her with me. When James arrived the following morning, we went down to Special Care together to see Lucy. We were given chairs at the side of her incubator to sit on, as they told us Lucy had had a rough night. We both sat there, gazing at our beautiful little girl, not knowing what was wrong with her, or knowing what lay ahead. Just after 10am, the consultant, Dr Manning came round and asked to speak to us. We went taken in to the 'quiet room' with him. James' parents who were visiting at the time came with us. Dr Manning was carrying a box of tissues, and his voice seemed shaky. I could tell he had bad news for us, but NOTHING could have prepared me for what he was about to say. We sat down on the sofa's as Dr Manning told us he was sorry. He told us that although nothing could be confirmed until her tests came back, he was 99% sure that Lucy did not have Downs Syndrome, she had Patau's Syndrome (T13) instead. He went on to tell us Patau's Syndrome is not a condition compatible with life. He said that 90% of babies born with Patau's Syndrome seldom survive infancy with most dying within their first year of life. We were advised to get Lucy blessed as quickly as possible, as they didn't expect her to survive the weekend. James broke down in tears, his mum and dad seemed to ask endless amounts of questions, and I remember just sitting there numb. I had heard what he said, but I didn't take it in. I didn't want to. I had wanted Lucy so much, I had carried her, I had given birth to her. I didn't care what they said. He had to be wrong. I wasn't prepared to lose her now. We spent the next few hours getting in touch with the rest of our immediate family, asking them to come up to the hospital for Lucy's blessing. James went to Mothercare because he wanted to buy a dress for Lucy to be blessed in. He chose a lovely little pink one which although was aged 'Tiny Baby' was huge on Lucy. He also tried to get hold of our local reverend, but he was on holiday. We were told that the hospital have their own chapelain and so we asked them to get in touch with him, so Lucy could be blessed as soon as possible. Special care were very good to us. They gave us a room to all sit in as we were waiting, and when the time came, they allowed our family and friends into the unit with us. In total there were 18 people; Me, James, Thomas, my mum, my 2 sisters, my brother and his girlfriend, James' mum and dad, his 2 sisters, his brother and his girlfriend, my auntie and uncle, and our next door neighbours. It meant a lot, that they allowed them all in with us, as Lucy was blessed. Me and James wanted to spend as much time with Lucy as we could. We had no idea whether she would live a few hours, days, weeks or months. It was so difficult. We both spent a lot of time crying. Then, the day after her blessing, someone passed me their newspaper and there it was, my horoscope, a message for me..... It said 'You feel a little cheated, but time is precious. Far too precious to waste feeling bad about something that is actually good. Use your time wisely now. Make some plans in a positive spirit. Adapt to the factors that you cannot change.' I read it and I knew it was true. I did feel cheated. Cheated that my little girl was so poorly and given no hope. But yes, time is precious. And no I didn't want to waste it feeling bad, when we had her here at least for now. I knew we had two choices..... one was to sit around and wait for her to die, the other was to treasure every moment with her. We decided to make the most of the time we had Lucy with us, and to 'adapt to the factors that we could not change.' The hospital were really good to us. They gave us a room up on the ward were James was able to stay over with me. It had a double bed in it, and our own bathroom with a shower and toilet. It made things a lot easier because I didn't want to be alone and James didnt want to leave us at the hospital. I also couldn't face being on a 'normal' ward, where new mothers were cradling their babies and preparing to take them home. It felt so unfair. Thomas stayed with my mum because I knew he needed some stability. He was 4 years old. He wanted us home with his new baby sister. When I had prepared him for Lucy's arrival, I had naively told him I would only be in hospital over night and that he would be home with Daddy. I hadn't prepared him for any of this. I hadn't prepared myself. We spent every moment we could with Lucy. I would usually wake at 6am and get ready and then stay with her until 11:30pm. I couldn't eat. I had no appetite. I couldn't sleep. The weekend went slowly. Lucy was constantly needing oxygen. She kept on 'forgetting' to breathe. I couldn't understand the condition she had, but my brother brought print offs about the condition that he had got off the internet for me. I would sit next to her reading through them and when I went to bed I would re-read them. Trying to understand. Despite all the negativity and all the 'most babies do not survive their first year of life' I managed to convince myself that Lucy would be my miracle. She would survive. She wasn't going to die. How could she? I loved her. I needed her. How could I live without her? Even though I didn't believe we would lose her, I never let anyone go in to see her without a camera. I just wanted as many pictures as I could get of Lucy. And as each roll was finished, I wanted them developed on 1hr processing, so I could look through them as I was trying to fall asleep at night. The weekend came and went, and Lucy was still with us. She was needing less oxygen and we were able to hold her a lot more. At times, she seemed like a normal healthy baby and no matter how many times we were told the prognosis was still the same, it was difficult to believe. However the results came back and it was confirmed..........Lucy had Trisomy 13. The week seemed to pass really slowly. Time seemed to stand still in a sense. It was like we were in our own little world up in the hospital. I hadn't left the hospital or even been outside once for fresh air, since I had been admitted over a week before. We had no idea what was going on outside in 'the real world,' though to be honest I can't say we cared. Lucy was our priority and we just wanted to be with her. Having it confirmed that Lucy had Patau's Syndrome was strange. Her characteristics matched the condition, but apart from that, she just seemed like a normal premature baby that needed help with her breathing every once in a while. They say that most babies with T13 suffer with 'mental retardation,' though if this was true, why did she look at me and know who I was? Why did she turn her head towards a bright light or jump at loud sounds? Why did she cry when she knew it was time to be fed? Would she do and know these things if she really had this condition we knew so little about. That Friday though, when Lucy was 8 days old, we experienced the reality of how poorly she really was. Lucy kept on 'forgetting' to breathe, and was needing lots of oxygen given to her. They told us that things didn't look good and it got to the point were they told us we had to make a decision. They wanted to know if we wanted to put her on a ventilator or to let her go. It has to have been the worst decision anyone has ever asked us to make. We knew that we had to do what was best for Lucy, not us, and so we took her in the family room, held her in our arms and waited. Our consultant came in to see us on his way home. He wasn't going to be working that weekend and he told us that he knew it was very unlikely we would still be there on Monday, so he told us he was sorry and to take care of each other. Then he went. Once he had gone we just sat in the room, hugged and kept waiting. After a while though it seemed Lucy had decided she didnt want to go anywhere. She started breathing better again and we realised that it obviously just wasn't her time to go afterall. Monday Morning, Dr Mannings face was a picture. He looked at us and asked us what we had done with our baby. He thought we must have swapped her, as there she was, in her incubator, looking better than she ever had before. He told us that he could not believe she was still with us. She had got through another weekend after us being told she would not get through it. We knew that we just had to let Lucy do what she was going to do and believe that she had her own plans. The following day, Lucy was scheduled to have an MRI Scan and Brain Scan at Alder Hey Childrens Hospital to see if they could see the extent of any damage caused by the condition she had. We watched as she was put into the portable incubator and taken into the ambulance that was waiting outside. We were told to wait for her back at Arrowe Park for the few hours she was gone. I felt lost not having her there for those few hours, but for the first time in 2 weeks, I went outside for some fresh air and ventured over to the hospital shops and bought my first gift for my little girl. A cuddly little angel teddy. It wasnt much, but it was all that they had. Then we went and sat in the parents bedroom and waited for her to return. Lucy got back from her journey to Alder Hey at about 12:30pm. They brought her straight into the parents bedroom for us, and I was so relieved to have her back where we could be with her. The neonatal nurse went to get her portable oxygen tank for us, as we always kept it on hand incase she stopped breathing. She was only gone a few minutes when we realised it was one of those moments. I told James to quickly run and get the nurse and bring the oxygen NOW. By the time, she got to us Lucy had started going blue. She held the oxygen mask over Lucys face, but she never responded. She was rubbing her chest and saying 'Come on Lucy sweetheart, breathe for me,' but she never. The gentle nurses words, soon changed to a 'Come on Lucy, BREATHE' I was terrified. For the first time, I think I realised that we were going to lose her. I started crying, as the nurses voice was getting louder. Eventually, after what seemed like an eternity, Lucy drew a breath. She was alive! We were told that it was the journey to and from Alder Hey that had caused Lucy to have such an episode. The journey had taken it out of her. It completely shook me. I honestly never believed that things were so bad. I'd never felt so close to losing her, as what I had felt that day. As normal though, afterwards Lucy seemed fine. She continued breathing well, she was putting on weight. She was even moved from her incubator, to an open topped crib. We were thrilled. It meant we could be nearer to her, and we hoped it would mean she was a step closer to coming home with us. We got the results back from Lucy's scans and when we were told that everything looked normal, we were even more happier. We knew that they had expected the brain scan to show an obvious problem, but it never. It appeared normal. They explained to us though that a brain is like a fuse box. And though everything may look normal at first, it doesnt mean that one of the fuses hasnt blown. And that could be the same with Lucys brain. After having the results back from the brain scan, the consultant started talking to us about the possibility of taking Lucy home. We were caring for her 24/7 anyway. We were feeding her, changing her, giving her oxygen. There was no reason why we couldn't continue caring for her at home with daily support from the community neonatal nurses and health visitor etc Yes, the prognosis was still the same, but for her to see her home, see the nursery we had decorated for her. We were thrilled. We had a lot to sort out before we would be able to do so, but they gave us the date of the 13th May to aim for to take her home. We couldn't have been more happy!! Thomas had been coming up to the hospital daily for a few hours to visit his baby sister with his nanny. He loved talking to her and blowing her kisses and stroking her tiny hand. He kept asking us when we would be taking Lucy home and we told him that we hoped to the following week, but that we could still only borrow Lucy. We just didnt know how long for. Saturday May 4th, Thomas came up to the hospital and spent the whole day with us. I had decided that I would spend the evening at home that night, as I needed to phone the insurance company and let them know we would soon be having oxygen in our house. I also had to check that we had everything we needed in order to bring Lucy home. Before we left the hospital though, we just spent the day together, the four of us. We gave Lucy a bath and let Thomas help us. It was clear how much he loved Lucy, as he was helping to wash her and then dress her afterwards. We then each gave Lucy a kiss and a cuddle and one of the nurses took a polaroid picture for Thomas to take home with him. It felt horrible having to go home from the hospital without her, but I knew that it wouldn't be long before Lucy would be coming with us and we needed to prepare for that. I couldn't wait to get back up there the next day though. The next morning, as soon as we were ready, we made our way straight up to the hospital. I couldn't wait to see Lucy and give her a cuddle. When we got there, one of the neonatal nurses were standing by her crib and so we asked her how Lucy had been during the night. To our surprise, she told us that she hadn't been too good at all, and had needed a lot of help with her breathing. At one point, even needing oxygen pumping into her with a bag. I wondered why they hadn't phoned us? The nurse suggested that we should stay there that night, though I had no plans to leave her again anyway. I needed to be with her. I stayed by Lucy's side all day, though found myself doubting what the neonatal nurse had told me about the night before. Lucy seemed fine, she didn't need help once with her breathing. I didn't believe that such a change would have occured in her in the case of a few hours. I'll be honest and say I thought that the nurse hadn't known what she was talking about. Lucy was improving and we hoped she would soon be home. That evening we planned to let Lucy sleep in our room through the night. She still needed feeding 2 hourly, but we figured if we wanted to take her home, we needed to get used to the 2 hour feeding through the night. We took her through to the parent bedroom just before 11pm and James started preparing her 11pm feed, as I held her whilst sitting on the bed. Lucy had been making little noises, as if to tell us it was time for her milk, but I realised she had all of a sudden gone very quiet and as I looked down at her I realised she had stopped breathing again. James quickly passed me the oxygen mask, but she didn't respond to it. I put it over her mouth, but there was nothing at all. I got up and we ran down into the intensive care unit, where one of the nurses grabbed her off us and put her quickly on the table. The neonatal nurses got no response of her either. I could tell they were worried, as I saw the colour draining from Lucy and then watched them as they frantically started pumping oxygen into her tiny body. I remember one of the nurses saying to me 'this doesn't look good' and I just wanted to scream and tell her to be quiet. This was just another small set back. Lucy would be fine. After a few minutes Lucy started breathing again and they told us they would keep her in the intensive unit overnight whilst we got some sleep, but I couldn't leave her. James was exhausted, so he went and got a few hours sleep, but I just stayed there, I was too scared to say goodnight. All through the night Lucy's breathing continued to deteriorate. She had barely recovered from one episode, before she had stopped breathing again. At around 3am, one of the nurses phoned the consultant at home to come in and see her. I knew deep down things weren't good. I held Lucy most of the night. She seemed to breathe better when I was holding her, instead of being lay down. But it couldn't hide the fact she was in pain and with each apnoea, Lucy was getting worse and worse. I can't remember what time the consultant arrived at the hospital, but he took one look at Lucy and told us it was decision time again. Lucy was in pain and her episodes of stopping breathing were taking their toll on her body. He asked us to decide what we wanted to do. Have her put on a ventilator or let her go. We sat with Lucy a while longer whilst trying to find the words we knew we had to say. Lucy stopped breathing again and when they finally brought her round this time, they told us that she had lost her sight. I was devastated. We knew what we had to do. We couldn't find the words, so when the nurses asked us what we wanted to do, we just nodded our heads to say let her go. We took Lucy into the quiet room with us and held her tightly in our arms. She was breathing, but very erratically and before long she stopped breathing again. She never restarted. She was 18 days old. The nurse came in and pronounced that Lucy had gone at 2:16pm on the 6th May 2002. She was crying. I was numb. I looked at Lucy and she looked like she was asleep. I kept waiting for her to take a breath like the times before, but she never. I felt like it was all a bad dream I passed Lucy to James and told the nurse I had a few phonecalls to make. I wanted to phone my mum and James' parents. The nurse said to let her do it, but I said I would. I realised what I had to tell them, it just hadn't sunk in. I phoned my mum on her mobile. She was at the bus stop with Thomas and my sisters at the time. I told her Lucy had gone. That we had lost her. She told me she would be straight there. I phoned James' mum and she said the same. I went back into the quiet room where we were asked if we wanted to bath and dress Lucy before our family arrived at the hospital. We said we did, and so I bathed Lucy for the last time. As I held her, it was clear to me that she wasn't there. She was gone. We dressed her in a beautiful white dress that the hospital gave us. She looked just like a beautiful angel fast asleep. Our family arrived at the hospital and in turn they held Lucy for the first and last time. That was the worst day of my entire life..... the day my heart was broken forever x