This is me and my Mum and Jonathan my brother.

I was born on 5th May 1992 at Kings College Hospital in London. My Mum and Dad knew that all was not right with me as I had not grown very well but when the Doctors told them I had Cornelia de Lange Syndrome they felt they could not give me all the love and attention I needed to be the best I could be. So they decided to ask the Social Workers to find me a special Mm and Dad who could. I weighed 3 pounds 2 ounces when I was born and needed to be looked after in the Special Care Baby unit. I could not suck or swallow so I had a tiny tube through my mouth and down into my stomach for milk to be fed to me. I had a lot of trouble keeping that milk down too and several times I aspirated stomach contents into my lungs and developped pneaumonia. For five weeks the nurses in Special Care took great care of me but also Jane my social worker had found a wonderful Lady called Shirley to take care of me until my special forever family could be found. Shirley visited me frequently and came to know and love me very much. Then I was big and strong enough to leave hospital and go home with her and her daughter. Jane took a very special interest in me and eventually in order to find the right family she wrote a pen picture all about me and had some lovely photos taken and then put my story and picture in a magazine for people who want to adopt. In November 1992 a family 200 miles away were looking for a little girl to adopt as their daughter. They read the PPIAS magazine regularly and always chose children seperately and then compared them, they both had MY NAME on their lists. They telephoned Jane and she liked the sound of them and arranged to go visit. Jane came back to tell me and Shirley that she thought she had found that special family to be my family. So they then arranged to come and see me. Their names were David and Tina and they had a little boy Jonathan who was 2 1/2 years old. Jonathan had Downs Syndrome and had also been a poorly baby when he was younger. He had been fed by a tube so David and Tina knew all about those. The day arrived and Shirley bathed me and dressed me in a beautiful Lilac dress. David and Tina arrived with Jonathan and looked very nervous. They had been to see the Adoption Doctor. He had told them all the worst things that could happen to me and had painted a very bleak picture. Mummy says she will never forget this man telling them I was deaf, blind totally unresponsive and would never achieve anything. Daddy says all he can remember is them saying I was very Hairy and could not straighten my arms. They both wondered if they were doing the right thing. Within two minutes I knew they loved me, here was my forever family. Mummy said she wanted to put me in her pocket and take me home there and then. Jonathan kept climbing up to give me a kiss. The day went very quickly and soon it was time for them to go home and decide if they wanted to take this any further. What do you think? There was a lot of official work and meetings to happen but eventually on the 10th February 1993 I came home. It was a very traumatic journey Mummy and Daddy had a lot of luggage and me and Jonathan. The traffic in London was really heavy and we only just got the train, someone was sitting in our reserved seats and the train was really busy. All Mum and Dad could think about was how beautiful I was! Then when we got almost home the train had to go dead slow as there had been a bomb threat. We eventually got to Preston where Mum's friend Christine was waiting to pick us up. Aunty Christine took us back to her house in Nelson where the community Nurse had delivered some medical equipment that Mum and Dad were going to need. There we all started to get to know each other. Aunty Christine has four children and Sarah who was 3 years old at the time thought I was a baby doll, She had wanted Baby All Gone for Christmas and decided I was even better! Aunty Christine gave me lots of cuddles and Jonathan and Oliver decided we were all nuts and that the box of cars was still the best fun to be had around there! Eventually Mum and Dad decided to take me home. Jonathan was so tired he went straight to bed but Mum and Dad had to start sorting out my gear and getting into the routine of feeding and keeping me safe. First they rang Shirley to say we were all home safe. Shirley told Mum her lounge had suddenly grown and Mum laughed and said hers had shrunk by the same proportions! I think they meant I take up a lot of space even though I was only the size of a newborn baby yet I was 10 months old. Mum took me to baby clinic to meet Mrs Webster my new Health Visitor she made lots of fuss of Jonathan before she even looked at me she said HE was her special boy!!! But then she came and picked me up and chatted to Mum while she gave me a big hug. I was stripped off and weighed and everyone gasped that I only weighed 8lb10oz. But all the people in that room said how beautiful I was so I decided I liked them anyway. Life settled to a routine. I was often sick after my feeds and Mum decided to give me smaller amounts more frequently so I was fed every two hours. I was still sick a lot and needed suction to keep the vomit out of my lungs. Then I became ill with a chest infection and Mum had to call the doctor out.  Dr Palmer was our Doctor and she was quite worried about how my chest sounded and told Mum if I was not getting better in a few hours to call her back. Well I did not have a good night but was not so hot in the morning so Mum decided the antibiotics were working. Mum and Aunty Christine had arranged to go shopping that morning so we headed off to Sainsbury. Mum says this is a shopping expedition she will never forget. Mum and Aunty Christine have a very similar wacky sense of humour and this is probably not at all funny to anyone else but we all look back at this and remember it with a smile! Aunty Christine was looking in the frozen food cabinets and spotted some Mini Pizzas, At the same moment Mum had noticed that I was no longer breathing and was looking very blue and unresponsive, As Aunty Christine called out... "Tina they've got those minni pizzas the kids like." Mum's response was less enthusiastic... "never mind the minni pizzas Rosie has stopped breathing" Mum managed to clear the mucous from my throat and I started breathing again albeit very noisily. Mum thought she had better finnish the shoopping quickly and get me back home. Once we were home I seemed to be coping OK so after a dose of Calpol and some chest physio Mum relaxed with a cup of coffee while Aunty Christine picked up Sarah and Jonathan from their respective nursery schools. The next morning I was still a bit warm and breathing noisily so Mum made an appointment to take me back to the Doctors later that day. In the meantime we went to pay a visit to the School that my Older brother Luke had attended and where Mum still worked occasionally as a Nursery Nurse. Mum was looking for a permanent Job to enable Dad to give up work to care for Jonathan and me. Mum could earn more Money working less hours so it would be better for us all. As we left Mum suddenly felt me go all limp in her arms. I was not breathing nor could she feel a pulse. We were just round the corner from the hospital so she jumped in the car and drove with me on her lap trying to get me breathing and my heart beating. Mum says she cannot remember getting Jonathan in or out of the car nor does she know how she got to the hospital or parked the car. But we found our way to the Children's ward where everyone jumped into action and they kept me alive to fight another day. Like most children with Cornelia de Lange Syndrome I have very tiny veins. It took 22 attempts to get a line into my vein and after 4 hours it had blocked. I ended up with a patch of my hair shaved and a drip in my head. Mum says I was not pleased at all! I was very ill for a few days but then I picked up quickly. Dad had taken time off work while I was in hospital to help care for Jonathan while Mum was staying at the hospital with me. When I came home Dad got ready to go back to work and Mum got in a panic she could not face coping with us on her own. They decided they had to do this caring thing full time or I would have to go back into care. So it was me or Dad's job! Fortunately I won and Dad is now a full time carer too. Mum and Dad visited Welfare rights and discovered that they were actually better off with them both at home and Jonathan and I deffinately were. So started a whole new episode in our family life. Mum remained on the school's books for relief nursery nurse work but had to beg them not to pay her as it made finances very complicated. When I was well and Mum got a call she would still go in and help out and enjoyed being with the children and staff who knew Luke so well. During the Summer months Jonathan and I both had a few serious health problems and ended up in hospital on several ocasions. Mum and Dad decided that they wanted to move back South to where they had more family around to give them support. It was whilst they were on holiday in Cornwall that they made the decision and they spent most of the holiday looking for accomodation. As they were both not working they found they could not get a mortgage so they had to look at Rented accomodation. Eventually they found a bungalow in Chippenham Wiltshire. On October 30th 1993 we moved in. The journey down from Lancashire was not an easy one as again I was ill. The traffic was horrendous and we stopped at every Service Station on the way so that Mum could Use the Suction to keep my airways clear. It was not long therefore, before I made aquaintance with the Children's ward at Royal United Hospital in Bath. We met our new Paediatrician a lady who was so patient and considerate Mum forgot her worries about leaving our old friends at Burnley hospital. I had several admissions with pneamonia and then one day Mum was in a frenzie as I had had several episodes of Apnoea, stopping breathing. She had always noticed in time but was terrified that sooner or later she was not going to find me in time. So whilst in hospital she asked if we could have an apnoea monitor to take home. Our Paediatrician came in and said she wanted to find out why I was having these episodes rather than just send me home with a monitor. Mum was really pleased, I was scheduled to have a Barium Swallow and reffered to Bristol Children's Hospital to have a PH Study and Endoscopy. I had the Barium Swallow at Bath. The Radiographer was a lovely man who was very interested in my Syndrome and asked a lot of questions about how to keep me calm and how much I understood. They decided it was better to give me the Barium through my tube as I was not too good at swallowing and they did not want to get any in my lungs. As they put the liquid down it could be seen on the x-ray as a black line then he turned me over onto my side and I was sick. The fluid came back up seen as a larger flow on the x-ray and that showed what my problem was. I had severe gastric reflux. I had had this test done previously but not by someone as experienced and thorough as this guy. He listened to what Mum said, and talked to me as if I existed! The Doctor started me on some drugs to try and lessen the reflux but sadly although we tried many combinations and dosages over the next few months nothing helped. I went to Bristol Children's hospital on the day before my second birthday having been in Bath for quite a long stay and was more or less over my chest infection. I was given a light sedation, which did nothing for me, before they put a tube down my nose and into my oesophagus. I had an x-ray to make sure it was the right distance from my stomach. The tube which measure acidity needs to be two thirds of the way down to give a very acurate measure of the amount and acidic nature of the stomach content that comes into the oesophagus. It has to remain there for 24 hours. So I spent my second birthday with a tube down each nostril in Bristol Children's hospital. The staff were very good to me and had decorated my cot in the night with balloons and streamers they had bought me a knitted doll too. The staff from Bath had bought me a musical toy to fit to the side of the cot too. The tube was removed at tea time and sent to be annalysed. The next day The Gastroenterologist came to see Mum and she said that the test showed severe reflux and as I had had several apparant life threatening episodes already then they thought it was probable that I needed an operation to prevent the reflux. But first they wanted to do an endoscopy to see if there was any damage to my oesphogus. They decided to do this the next day whilst I was still in the hospital. Mum was very anxious as In Liverpool there had been a problem when I had my Grommets put in and no-one had explained what had happened. Also Luke had died after an anaesthetic so Mum and Dad were always extra anxious if either of us had to have an anaesthetic. That night Mum could not sleep and she rang her great friend Lynn. Was always willing to listen to Mum's fears and worries so it was almost natural for her to offer to come and sit with Mum and me for a while. However, Mum tried to put her off as she knew Lynn had to go to work the next day but at 1.30 am Lynn arrived and together they talked and prayed and Mum cried and Lynn Listened. By three am Lynn had to go but Mum felt so much better knowing that someone cared that much about us. At 9am the next morning I went to theatre and Mum went to sit and wait. She was very relieved when I came back to the ward grumpy and needing a little oxygen but looking OK. So it was a shock when a very anxious looking junior aneasthatist came in asking to speak to her. Apparently because my airways were so small and my chin recessed they had had terrible problems in the anaesthetic room. Once they anaesthetised me they could not get a tube in to keep my airway open. The fact that the senior anaesthetist was in the next operating theatre was my only help. He was able eventually to get a tube in and I had been very fortunate. He was anxious that we know this in case I ever needed an anaesthetic in an emergency. Mum just did not want to hear it but could appreciate why he had come straight down to speak to her. The results of the Gastroscope had not been very conclusive either as the scope was too large and they had had to use a bronchoscope which was designed for looking at lungs not oesophagus. Therefore, they had not been able to take samples and they had not had as good a look as they would have liked. The Doctor was very kind and compassionate and when Mum got uspset she said she understood as she had children herself and although they were healhty she always looked in and prodded them to make sure they were breathing when she went to d. So she could see why Mum was so anxious about my apnoeic attacks. They wanted to do a sleep study to measure the oxygen levels whislt I was asleep and another proffessor in paediatric care came to talk to us about this. He too was a lovely man who told Mum she needed to take a break from the ward, He was so insistant he put his arm round her and gudeid her out of the ward and took her to the canteen for a hot drink. He explained the tests and arranged to do them whilst I was there. My overnight stay extended into 10 days. The sleep study showed my oxygen levels dropping drastically whilst I was asleep despite the nurses giving me oxgen therapy. The following morning I had a raging temperature and they did not want to discharge me. Mum managed to persuade them to send me back to Bath so Dad and Jonathan could visit more easily. Bristol Children's was an hours drive away and was eating into the petrol costs. Bath was half the distance and meant that Dad could visit while Jonathan was at Nursery. Eventually I got out of hospital and By June I was well enough to go away to Cornwall to visit Grandma and Grandad. We arrived on the Saturday night and by Sunday afternoon I was showing signs of pneaumonia again. We returned to the house in St Ives where we were staying late afternoon and sudenly I stopped breathing and had no pulse again. Mum started trying to suck me out and Dad picked up the phone to call an ambulance. Mum could not get any air into me and Dad could not remember how to phone an ambulance, I guess they panicked a little! They swapped and both got a little success as Mum spoke to the Ambulance control I started to cry. The Ambulance lady on the phone calmed Mum down and they managd to keep me breathing until they heard the sound of the siren. Unfortunately the addresses in St Ives are very complicated and the Ambulance went to the wrong house. A doctor arrived on the scene first and he gave me some oxygen and stayed until the ambulance eventually arrived. They had gone to a house down the road and rushed in and grabbed the child playing in the front room. The parents were a little shocked then they realised they were in the wrong house and turned and ran out again. They were rather breathless when they reached us! They took us to Truro hospital where I was stabilised and put on IV antibiotics. Every nurse that came to me said I looked just like Bracken. Mum eventually discovered that another CdLS baby had been born 6 weeks before and had only been discharge three days ago. Mum suggested that they rang the family and told them we were here. If they wanted to meet us we would be very happy to meet them. No-one wanted to take the responsability for that. Eventually Mum persuaded them that they only had to pass on the information it was up to the family to decide whether to come or not.We did not mind either way although it would be lovely to meet them. They arrived within an hour of the phonecall! Bracken was the image of the photos Mum had of me at that age. Mum said it was so nice to actually see what I looked like so tiny The grown ups all talked for ages and Bracken was laid in the cot alongside me. We eyed each other for a while and both fell asleep. Mum said that seeing me alongside a 6 week old baby of 3lb 6 oz made me look like a 2 year old. They all swapped phone numbers and agreed to keep in touch, sadly 6 years later we have lost contact. I remained in hospital for the rest of the holiday and was allowed to travel home with oxygen and all my medication. I ended up going straight to Bath Hospital as Mum was concerned about my breathing. I went back on IV antibiotics for another week before going home. We had an urgent appointment made to go back and talk to the surgeon and Gastroenterologist at Bristol where they decided to put me on an urgent waiting list for the Nissen Fundoplication. I had this surgery on August 25th 1994. That was the beginning of a new lease of life for me but not without a lot of worry and trauma for my Mum and Dad.

xt.