Jaymie-Leigh’s Story


    Our story began on 9/9/99 when our beautiful daughter Jaymie-Leigh Parke was born. We already had two gorgeous girls, Becky and Nikki who were now aged 10 and 7. It was to be our last baby as I had already had three caesarean sections. My math is not poor; our first child was still born, a little boy born at 30 weeks.

     Jaymie-Leigh was born perfectly normal and was so up until the age of four months. She was reaching all of the normal milestones, smiling, chuckling, and playing with toys. Then it all began. She was crying and crying and crying, stopping for perhaps only an hour at a time, but why? Could it be teething? We bought every teething remedy on the market. Could it be colic? We bought different things for that as well. No child could cry for that many hours in a day.

     We went on holiday in April, a well-earned break we thought. She cried nearly all the time we were there. People just kept on staring in judgment. One lady even said to my Mom “These young mothers haven’t got any patience” as I was quite frustrated at the time and I was commenting on people looking at us.

    We came home and made an appointment to see the doctor. Our usual doctor was away on holiday so we had to see a locum doctor. This was the first of four appointments in two weeks. He told us Jaymie-Leigh was teething and prescribed the usual painkillers. The next time we went we saw our own GP, Dr Cartwright. He said she had mouth ulcers and a throat infection, which wasn’t surprising considering the amount of crying she’d done. He prescribed antibiotics. The next doctor was another locum doctor who told us she had a cough and prescribed cough mixture. I never even mentioned a cough. The next day I took JayJay (as we called her) back to the surgery where we saw yet another locum doctor. It was holiday time so Dr Cartwright wasn’t there during this time. Finally this doctor noticed that something wasn’t quite right. He said he didn’t like the way she was just sitting there so he contacted a pediatrician there and then. He made an appointment for Jaymie-Leigh to see him on 4th May 2000.

     Over the next week or so Jaymie-Leigh deteriorated. When she wasn’t crying she had a blank expression on her face. Feeding was a problem but only because of the crying. She had lost interest in her toys. Her thumbs were tucked in tight, which we thought was for comfort. Her limbs became stiff and her head arched back when she cried which was still most of the time. She was obviously in severe pain. She’d look at us screaming as if to say, “Help me”. We felt so helpless, so tired and frustrated. My husband Richard and I were taking it in turns to go to bed.

    It was 2nd May. We’d had the usual sort of night, I went to bed for a few hours then Richard woke me up and off he went. I washed and dressed JayJay, she looked worse than ever. She’d got a massive umbilical hernia from all of the crying. My Mom had just come home from a weekend break and she offered to have JayJay for the night so that we could spend some time with Becky and Nikki and get a good night sleep. She phoned me the next morning and said that she thought Jaymie-Leigh should see the doctor again because she seemed to have lost weight and having not seen her for a few days noticed a change in her. I got ready and went round. I decided I’d had enough with doctors’ opinions and that I would take her to Accident and Emergency at the hospital. We waited there for hours until we were finally called in for an assessment. Two doctors saw her and they said that I was being a little over protective and that they couldn't see anything wrong. The fact that she had such a big hernia and that she hadn’t had a wet nappy for nearly two days should have made them a little bit curious.

    I told them that I wasn’t satisfied and that I wanted another opinion. They admitted JayJay to the children’s ward in Wordsley Hospital.  Luckily the hospitals are very close by.

    We had to wait until the next day to see a pediatrician. She was assessed when we got there by a doctor for admission purposes only. The next day Dr S came. He looked at JayJay, bent her limbs and did a few physical tests. He then told me that my daughter was more than 50% behind in her development. How could this be? Richard had stayed at home during the night to look after Becky and Nikki. I sobbed all the way to the telephone. I couldn’t even get the words out. The rest of the day was spent on blood tests, head scans and eye tests.

    I told Dr S that she was alright before but as time went on we realized that he hadn’t listened to a word I’d said. The “over protective Mother thing” again. Later that day I spoke to a trainee pediatrician and I asked what they were testing for. She said that they were testing for metabolic disorders. “And what does that mean?” She explained something that meant nothing to me; I hadn’t got a clue what she was saying, then she said, “And if she ever walks....” What did she mean? Would our little girl never walk? I just wanted to take her home. It was all too much.

     We went home that evening so upset but not really believing what they had said. Children don’t just lose skills they’d already got. “It must be the vaccinations, there’s no other explanation. 

    We were told to go back in six weeks for the results.  In the mean time we had to take her for a CT scan.  She was still crying for about 20 hours of the day.  It was like living on a time bomb.  We thought she was definitely vaccine damaged.

   We set out for her appointment. I felt sick. I was crying on the way to the hospital in fear of what would be said. We went into the room where Dr S sat. He gave us a speech saying that she had signs of cerebral atrophy, meaning that her brain was smaller than it should be and that it would have happened in the womb due to an infection. My husband looked at me and I looked at him, both of us were thinking the same thing “I haven’t done anything wrong.” He then said,  “She may not know the world around her, she may never be able to feed and look after herself and she may always be in a wheelchair. The more time you put into her care the better chance she’ll have of doing things.” Had he rehearsed this speech? “Come back in six weeks.”

     We left the hospital feeling devastated. We talked about how we’d do everything we could and have her the best of everything to help her. We used to sing to her, talk to her, play with her, massage her and exercise her limbs, even though we weren’t sure if we were doing the right things. Becky and Nikki would play with her for hours although there wasn’t much response as by now she’d lost her facial expression.

     We visited the Children’s Assessment Unit at Wordsley Hospital a few times, still with no results as to what caused these problems. Every time we went they wanted more blood. Then we’d get a letter about a week later saying that they hadn’t got enough blood and we’d have to take her back. They could never find a vein so they’d end up holding her down trying to squeeze blood from her hands and feet while she was screaming.

     It was coming towards August. Jaymie-Leigh was still crying. Richard and I were exhausted. Feeding had now become a problem. JayJay was fine on blended solids but milk and juice were making her choke. Every feed time was a nightmare. It was summer time so she needed extra fluids. We had an appointment to see Dr S for a follow up appointment and I told him the problem. He gave us one of his speeches again. Had he listened to a word I’d said? “Take her to the Path Lab we need some more blood.” I told him the problems we’d had, being sent for when there wasn’t enough blood and he told us to take her to the ward if there were any problems. After they’d poked and prodded at her hands and feet, the ward was where we had to go.

     Whilst we were on the ward a nurse came to us. She said, “Dr S has just heard that you have photos of Jaymie-Leigh from before she became ill. He would like to see them as soon as possible. Could we pick them up from your house?” We had already told him about the photos but he was never interested. The photos were fetched the next day. The same day we had a phone call from the hospital asking us to take her onto the ward. Had they finally realized that we were telling the truth? Dr S talked to us and he said that he didn’t realize how well she had been. I could see the anger in Richard’s face. He told us that she may have a metabolic disorder and that it could be very serious. I started to cry again, I say again because we were told before that Jaymie-Leigh might have something called Rett’s Syndrome, which is another serious disorder. Richard comforted me and reminded me of all the other times they had said, “It could be this or it could be that” and I’d been upset for nothing. Anyway they decided to do a lumbar punch test.  That was the only thing I couldn’t watch. We left the room feeling sick to our stomachs. After staying on the ward for a while we were sent home.

     The next appointment proved nothing again. By now we had strongly got it into minds that she had been damaged by vaccine. Even Dr Cartwright was convinced. The choking had got worse by now and JayJay seemed to be losing weight. I told the pediatrician of my concerns and that I wanted something done about it now, not when she was too ill to fight. He decided to admit her onto the ward where her feeding would be monitored. We took her in that evening but it wasn’t until lunchtime the next day that anyone even looked at her. Eventually the pediatrician came and gave me a bottle and said “Show me how you feed her.” I did, and he told me her position was wrong. Did he think I was stupid? I’d tried every position there was. He finally decided there was a problem. “She’ll have to have a Nasal Gastric Tube fitted.” When he’d gone the nurse explained the procedure. I was taught how to feed her and she seemed to settle down from the crying a little bit. The next day she had to go for a Barium Swallow Test. We later found out that her swallowing reflex was slow.

     The next two weeks were spent in hospital just sitting there being shown how to give bolus feeds and how to use a pump for night feeds. They tried to get Jaymie-Leigh an appointment at Birmingham Children’s Hospital where the specialist doctors are. She needed a MRI scan and if she was an inpatient at Wordsley Hospital she would get an appointment sooner. Every day I asked if there was an appointment, every day they said there were no beds available. They told me on the Friday that she had an appointment on the Monday. They trusted me to feed her and said I could take her on home leave for the weekend but we must be there for 3 o’clock on the Sunday.

     Over we went, not realizing that we would be there for another two weeks. They did the brain scan and numerous other tests such as eye tests, nerve conduction studies, a full body X-ray. The only good thing was that she was hardly crying. Perhaps her tummy was feeling better being full.

     We saw a pediatrician who thought we should see a genetics specialist. He was a very nice doctor and he actually listened to what we had to say. I showed him photos of Jaymie-Leigh as she was before, happy and content, playing and sitting up, none of which she could do now. He told me that her condition was very serious. I felt like a ton of bricks had hit me. It seemed worse coming from the specialist doctors at Birmingham. I went to the phone, again sobbing, to let my husband know. He came straight over.

    All this time JayJay was in hospital I never left her side unless family came to visit then Richard would take me home for a few hours for a decent meal and a shower. There were facilities at the hospital but I sometimes needed the break and it was a bonus to be able to meet the children from school. The other children need that little bit of attention, although Becky and Nikki never complained, they were really well behaved.

     It was coming up to Jaymie’s first birthday. I told the doctors that I didn’t want her to spend it in hospital. They let us go home for the weekend; everyone came to see her on her birthday. We had a little party and the luxury of sleeping in our own bed. Monday morning came and we had to go back.

     All her blood results were still proving negative and so she had to have more. We knew something had happened to her brain but what? Every test she had such as the nerve conduction studies and eye tests were not giving good results. Her nerves were not reacting properly and her eyes weren’t working properly. I cried at every test. I knew there was something wrong but for it to be confirmed was heartbreaking.

    The week after I asked if we could take JayJay on holiday for a week as in August we had taken the children away to the seaside and Jaymie developed a nasty rash. We took her to the hospital in Wales but no one could understand why she was so floppy. I tried to explain that she was usually like it but not having a diagnosis made it difficult for them to understand. Her rash got even worse the next day so we decided to come home, although Becky and Nikki stayed there with their two Nans. The bad thing was it was Nikki’s birthday, yet another upset, I wanted to be with her on her birthday.

     This holiday was much better. Although we had to take all of the feeding equipment and plan everything around feeding times, JayJay was much more settled and at least we were all together. We knew where the hospital was in case of an emergency.

     We came home after a week and tried to put a touch of normality back into our lives. I took Jaymie to the doctors a few times for different things such as nose and throat infections, which were probably caused through the NG tube. Each time, Dr Cartwright phoned the physiotherapy department trying to get an appointment for her. The pediatrician we supposed to have referred Jaymie-Leigh, but we seemed to wait forever.

     Eventually, we got an appointment. We had to wait as there is a waiting list for appointments and patients are given appointments by priority. Hydrotherapy was also arranged but we had to take her to a special needs baby group for it. We were told that we’d meet other parents there who were in the same position as us and maybe we could talk to them to get some support. This seemed like a great idea, but when we got there we realized that although the children obviously had problems, they could play and do things. Jaymie-Leigh couldn’t do anything. It was really upsetting. Still, I used to take her just for the hydrotherapy, which she loved. She would be so relaxed for hours afterwards.

     One day we had a phone call, asking us to take JayJay to Birmingham Children’s Hospital for some more blood tests. I asked while we were there what they were testing for. “We are testing for something called Leukodystrophy,” they said. “She doesn’t present as a child would with this condition, but we want to rule it out. Don’t look it up on the internet as the information may not be correct and you may upset yourselves for no reason”.

     Of course, we went home and looked it up in a medical book, as we didn’t have a computer then. “I hope it’s not this,” Richard said, “It’s really bad”. There was a brief description, about two paragraphs long, generalizing “Leukodystrophy”.

     We were now into October and we thought that we’d decorate to cheer ourselves up and smarten the house up as we were getting people visiting more regularly. We had an appointment to see JayJay’s usual pediatrician on the 17th, and another appointment to see the pediatrician from the Children’s Hospital on the 18th, both at Wordsley Hospital as the Birmingham doctors run a clinic at the local hospital every so often. We went to the Children’s Assessment Unit on the 17th, where the usual speeches were made. All they were worried about was that Jaymie had put on too much weight. Dr S asked what the Children’s hospital had tested for and Richard had told him that it was something called Leukodystrophy. “Oh no, it’s not that. I’ve already tested for that”, he said. We were relieved, having read about it. Jaymie-Leigh’s physiotherapist was in the room with us, as she wanted to hear if there were any suggestions for her treatment. We went home as usual and carried on with what was now everyday life.

     The next day we continued with a little more decorating and, as it was getting close to the appointment time, we downed tools and got ready. We thought that they couldn’t tell us anything different from the day before. Little did we know that that day would change everything!

     We went off to the hospital and we were called in quite quickly. We sat down. Richard was holding Jaymie-Leigh. The pediatrician from Birmingham looked at us and said, “I think we may have a diagnosis”. My heart started racing. Once again I felt sick. “We’re just waiting for a phone call to confirm it”. We looked at him, waiting to hear what ‘it’ was. The telephone rang and he spoke to someone as we sat there, lost. Finally, “we have a diagnosis”, he said. “It’s something called Krabbes Leukodystrophy”. How could this be? The doctor the day before had said that he had tested for Leukodystrophy, he had not said that there were different types. The pediatrician explained in medical terms what the condition was. Richard asked what it all meant. “It means her brain will slowly shut down. She may only live until school age so enjoy her while you can. Take her on lots of daytrips and give her lots of love”. I couldn’t believe what I was hearing. “What do I do if she’s poorly?” I asked, looking at him and holding back the tears. “What do you mean?” he asked, “If she’s dying?” At that point I walked out of the room. Our beautiful little girl was going to die. The supporting nurse came after me. She took me into an office and put her arms around me. “I now how you feel,” she said. “No you don’t,” I replied, “To you and them in there she’s just a file. She’s my little girl”.

     The only thing I remember after that was traveling home. Seeing Richard in the car mirror, crying. How was I going to tell my Mom? She was recovering from a mastectomy, having just found out that she had breast cancer.

     Mom opened the door as we pulled up. We went into the house and sat down. She looked at us know that something was wrong. We told her what the doctor had said and she broke down in tears. We then had to tell Richard’s Mom and everyone else; it was as though we were talking about someone else’s child.

     For the next couple of days I couldn’t even look at Jaymie properly. I fed her, dressed her and cared for her but I couldn’t look at her. Suddenly I thought to myself, “What are you doing? She’s still your baby, the same little girl you loved and played with before!” I picked myself back up and carried on as before.

     Now we were hungry for information, but all we had been given was a scrap of paper with “Krabbes Leukodystrophy” written on it. A friend of mine phoned to ask how Jaymie-Leigh had got on at the hospital. I told her the diagnosis and she said that she’d ask her sister to look on the Internet. A few days later she sent some information that she’d found, which included CJ’s story. We were devastated. We now knew that instead of the possibility of JayJay living until school age it was more likely that she wouldn’t even live to the age of two.

     We lived our lives from day to day, which we had been doing since her illness started. We never planned anything because if we did we knew that Jaymie would be poorly. The weather had started to get cold and if we took her out she would get a chest infection so she stayed indoors. Her body temperature was another problem, but, whereas in other children with Krabbes seem to have a high temperature, JayJay would go so cold and it was difficult to raise her temperature back up. So much for taking her on lots of daytrips! The only times she left the house was if it was a nice day, which wasn’t very often, or if I took her to my Mom’s. Her Aunty Deb would have her for a few hours on a Saturday afternoon to give us a break and to spend some time with her. I knew she could look after Jaymie-Leigh confidently and we were, and still are, very grateful. It was also nice to know that Deb and her family were interested in her as we hardly ever saw anyone. People didn’t know how to cope with the situation and so avoided it.

     We had a visitation from the Genetics Nurse. She is a lovely person and explained to us how JayJay came to have this condition as well as how the disorder might progress. She told us that JayJay might start to have Myoclonic Seizures. We didn’t really know what they were but we soon found out. Jaymie-Leigh started to have ‘shock-like’ episodes in her arms. It was quite scary, but as Beryl, the nurse, had told us what to expect, I telephone the doctor and explained to him what was happening and collected a prescription. He prescribed Epilim (sodium valproate). This quickly calmed things down, although the dosage was changed throughout her illness.

     Christmas was coming and I was dreading it. I knew that if anything happened to her at this time it would be a time of unhappiness forever and Becky and Nikki needed it to be a happy time. Everything went quite well except for my Mom being poorly at Christmas lunch. We went to Richard’s Mom’s house in the evening as we had always done, but we put a ban on smoking in the house, which everyone respected. On New Year’s Day we went to my Nan’s house because it was her birthday. The day was OK but the nighttime was a disaster. Richard had been out for a few hours with some friends. When he got back, he opened the door, and as I looked at him I saw blood streaming down his face. He had been knocked over by a car. What a beginning to the year.

     I had to phone Deb (Richard’s sister) to take us to the hospital and asked her daughter, Claire, to look after the children. I knew that Claire knew how to feed Jaymie-Leigh and how to look after her as she had been to her Mom’s most Saturdays to spend time with her. Luckily Richard was not badly injured and he was discharged from the hospital after a few hours.

     We had a bit of a settled time for the next few weeks. Jaymie-Leigh was deteriorating slowly but I didn’t like to admit it to myself. She was pretty comfortable though and we enjoyed our time with her. She hardly ever opened her eyes anymore, but she always knew who was holding her.

    Suddenly she became quite ill with a chest infection. Her nose was streaming and the only way to make her comfortable was to lay her over our knees on her tummy. This was her favorite position anyway but at the time it was the only way to move the secretions. She was a very poorly little girl. We did have a suction machine by now (after being on yet another waiting list to get equipment), but to get the phlegm to the right place to be able to remove it was another difficult task. We were never told how to care for Jaymie-Leigh throughout her illness; we had to learn ourselves, as we went along. There were times when she would suddenly stop breathing. The first time this happening I panicked and had to shout Richard, who was in the garden at the time. He quickly grabbed her off me. I think the shock brought her round.

     We took another trip to the doctors. Dr Cartwright asked us to take a sample of phlegm to the pathology lab and to take JayJay for a chest X-ray. I telephoned the surgery a couple of days later to see if the results had come back and to see if she needed any treatment. The receptionist said, “The doctor would like to see you. He’ll come to your house.” We knew it was bad news for the doctor to want to visit us at home. We sat waiting for the doctor to arrive, not really knowing how to occupy ourselves. I had butterflies in my stomach. I said to Richard, “I feel like I’m waiting for her funeral car to arrive”. I couldn’t stop crying after that.

     Finally the doctor arrived. He told us that he thought Jaymie-Leigh’s time was near and that he wasn’t quite sure what to do, as he had never dealt with a dying child before. He telephoned the pathology lab for the results of the Sputum Test and to find the results of the X-rays. The X-rays were clear but JayJay had an infection in her nasal passages. The pathologist said that he didn’t think it was worth treating but Dr Cartwright said that if it made her more comfortable then it was worth it. He phoned the Acorn’s Children’s Hospice, which is a brilliant hospice for children with terminal illnesses. They put him in touch with another doctor, who works closely with these children, and he suggested that a Nebuliser might ease Jaymie’s distress and that antibiotics should get rid of the infection. Dr Cartwright welcomed the advice and provided us with the equipment and medication.

     We had been introduced to the Acorn’s Children’s Hospice a few months earlier and we were offer respite if we wanted it. Although we were glad of the support we never let Jaymie-Leigh out of our sight. The Acorn’s Family Worker visited us on occasions and listened to our problems, which was a great comfort because no one seemed to want to talk about Jaymie’s illness and it was good to get things out sometimes. I’ve never really explained the full extent of JayJay’s illness to my Mom, even to this day, as I was trying to protect her from the upset.

     Jaymie-Leigh seemed to recover quite well over the next few days. She was still having episodes of not breathing so we couldn’t leave the room if there was no one there to watch her. We settled back into or usual routine, thinking everything was back to ‘normal’. We would sit her in he big purple beanie chair, which I happened upon one day while out shopping. The Physic department had order a chair for her eight months earlier and it arrived just after this scare so I told them to take it back as it was too late. She was more comfortable in her big purple chair.

     On Sunday 4th March, I was at my Mom’s house holding JayJay. Richard had been to play football and had gone for a drink with his friends as he usually did on Sundays. Suddenly, Jaymie stopped breathing. I tried to get her to breathe again in the usual ways, but this time nothing worked. She was turning blue and was very distressed. I started screaming, “Phone an ambulance”. I was panicking, Mom was panicking, Becky & Nikki were both screaming. I dialed 999 and the operator was on the phone trying to tell me how to revive JayJay. Eventually by using mouth-to-mouth resuscitation I managed to bring her back, just as the paramedics arrived.

     Previously, Richard and I had discussed what we would do if there circumstances arose. We had decided that we did not want JayJay to be resuscitated if she was ready to go but panic had taken over me. I did exactly the opposite to what we had decided. We knew that she was suffering and to prolong her life had been for purely selfish reasons. But how could I just stand there and let her die? She was in such a bad state.

     I went to the Accident and Emergency department with the ambulance. A team was there waiting and they fought to save her life. They took JayJay behind a curtain and sat me just outside to wait. Eventually they called me in to be with her. They were trying to find a vein to administer drugs but they couldn’t find one so they forced some sort of device through the bone in her shin. She couldn’t even cry, but I could tell she was in pain. Why had I put her through this? The tears rolled down my face. My Mom had managed to contact Richard and he walked in just prior to this. He looked at me and said, “This isn’t what we wanted for her”. “But how could I let her die?” I said. He told me that he understood. The tears were rolling down his face too. It wasn’t a time for blame. “This will never happen again”, I told him.

     As the doctors stabilized JayJay they said that I could go over to her. I put my face next to her and said, “Hello my sweetie”. Her head turned to me as if to give me love. That meant so much to me. When we had taken her to the Birmingham Children’s Hospital in January for a check-up, they had asked me if I thought she knew me. I told them that she did but it was as if they thought this was wishful thinking. I know that she knew her Mommy and Daddy to the end. How could the doctors possibly know her by seeing her for 10 minutes? They will never know how ‘tuned in’ to your child you have to be to look after them. It’s something that you can’t explain; when your child can’t cry, smile or move at all you have to notice the slightest change to know what they want.

     When Jaymie-Leigh was diagnosed with Krabbes I had said that her time in hospital was over; her place was at home. I knew that I could look after her better at home and that the doctors and nurses knew nothing about her condition anyway. They admitted this on that very same night. It was the first time they had shown us any respect, as we had to explain everything to them.

     JayJay was transferred to the children’s ward at Wordsley Hospital, where once again we had to explain her condition. We also explained our wishes and told them that we didn’t want Jaymie-Leigh to suffer any longer and that we wanted to take her home as soon as possible. They agreed but said that they would like to stabilize her. She was on monitors over night and she was given antibiotics, with our permission, via the NG tube. There was to be no intravenous drugs. Apart from stopping breathing a couple of times she had a quiet night. Richard and I stayed by her side. Becky and Nikki stayed with my Mom, as they all needed each other.

     From then on Jaymie was permanently on oxygen. The following day a different pediatrician came. We told him the same as we had told the others and I asked if we could take her home. He said that we could but that it would have to be arranged for oxygen to be there for when we arrived and that it might possibly be the following day, as it had to be arranged by our GP.  I said, “If you phone our GP I can guarantee that it will be there today”. He phoned Dr Cartwright and within a few hours the oxygen had arrived. The biggest wait was for an ambulance, as we couldn’t take her home in the car due to the oxygen. The paramedics had to be persuaded to take us, as it was too late to book an ambulance for transport home. We finally arrived home at about 7.15pm.

     Becky and Nikki were waiting to see their little sister as the last time they had seen her she was being rushed off in an ambulance and they thought that she had gone forever. We settled down, very nervously, to the evening. We decided to sleep downstairs as she always seemed more settled in her big purple chair. Her secretions were really quite bad so we had to use the suction machine as well as trying to keep he oxygen mask on. Richard told me to go up to bed to get some rest and that he would sleep later. I reluctantly agreed and although I didn’t think I would sleep I did.

     Tuesday wasn’t too bad. Jaymie was still very poorly but she wasn’t quite so distressed. She had a temperature but she seemed to be glad to be back at home. You could always tell. We had a visit from Hazel from the Children’s Disability Team. She had been on a few occasions and was great to talk to. She seemed to want to help but didn’t know how. It was the first time she held JayJay. The nighttime was a bit scary but then I always think nighttimes are the worst. Jaymie ended up sleeping in our bed with us. She used to love that and could usually manage to make us know that that was where she wanted to be.

     I had asked Dr Cartwright if he could arrange for a machine to monitor JayJay’s breathing at night, as it was a concern when I went to bed because obviously I couldn’t watch her. He had phoned Wordsley Hospital, Russells Hall Hospital and Birmingham Children’s Hospital but had been told that none were available. They were kept as priority for children at risk of cot death. I had been so angry. Any child at risk should have been able to use them. Dr Cartwright had told me of the problems he had had and had said that he and his staff had discussed the situation and decided to buy one out of the surgery funds. I was overwhelmed.

     Wednesday was the weirdest day of all. Everything I did was strange looking back. In the evening I decided to bath Jaymie-Leigh. She loved the water and hadn’t been in since Saturday. Obviously I had washed her down but having the oxygen on made it difficult. The mask wasn’t a problem but the oxygen cylinder was. I had to time how long she could manage without the oxygen so that she wouldn’t become distressed; I had about three minutes to wash her hair and give her a quick wash. We managed it and she looked a lot better for it. The curls were back in her hair and her skin was gorgeous as it always was. I lay her in her chair and she looked like a picture. The high temperature she had had before her bath had gone now. We watched TV for a while and went off to bed. Jamie-Leigh looked so comfortable in her cot. The only sound I could hear was the oxygen, which was unusual because I could usually hear her breathing. I went off to sleep.

     At around 4.00am I woke up. I looked over at my little girl and she was sound asleep. I wanted to take her out of the cot and give her some love, to cuddle her. It was something I never did, if she was comfortable I wouldn’t disturb her. I couldn’t stop looking at her and I really felt the need to hold her. I sat on the edge of the bed (JayJay’s cot was right next to me) and I decided to get her out. I lay her next to me in our bed and just stroked her hair and kept kissing her cheek gently. After about an hour she started to get a bit throaty so I sat up and lay her across my chest, this would usually work but the secretions got a bit worse. Richard woke up and asked if she was alright. I said that I thought she might need a bit of suction so he passed me the machine. As I did the suction she looked up at me; her pupils were large. This was how it had begun on the Sunday before. I looked at Richard, who was now beside us, and I started to cry. “I think this is it,” I said. I stopped the suction and she took a big breath in. I was so scared I started to sob, “She’s going”. “Let her go,” Richard cried. At that she took another deep breath and breathed out; she’d gone…

        It was the hardest thing I have ever had to do in my life, but I know it was the right thing to do. I think she waited for that moment; she died in her Mommy’s arms with her Daddy beside her.

    We phoned Dr Cartwright. He came very quickly, although our families were already arriving. I had taken Jaymie-Leigh’s tube out. She looked so beautiful, like a little angel. The doctor listened for her heart for a while and then he said, “She’s at peace now. She’s so beautiful, her skin remained so perfect throughout”. JayJay had kept her weight and although she had been poorly for such a long time she grew as any other child her age would. We woke the children and told them. We took JayJay upstairs to them, as we didn’t think it was fair to tell them in front of everyone. We all went downstairs to join everyone else and everyone said his or her goodbyes. I took her back upstairs where I dressed her in her pretty dress and said my goodbyes.  

    Her funeral was difficult, but so many people came and sent cards and flowers. It was overwhelming. Her physiotherapist, the community nurse, the disability team worker and the Acorn’s sibling worker all came. Even the girls’ head teacher came. There were people there we didn’t even know.

It’s very difficult to live life without her but Becky and Nikki keep us going. It’s difficult to know what to do each day when you’ve cared for your child twenty-four hours a day. I feel very lost and cheated. The only consolation I have is that my little girl is no longer suffering. I hope that she’s playing and laughing just as she should be.

     Along with Dr Cartwright and Mrs. Grosvenor, the school head teacher, I am setting up a fund in memory of Jaymie-Leigh. The money will be used to improve information and to purchase equipment for children with chronic disorders and terminal illnesses in the Dudley borough where we live. As I have described, we had tremendous difficulty trying to get medical equipment that we desperately needed, items such as the suction machine and the breathing monitor. So we will be trying to set up a base where equipment purchased can be kept and accessed easily by any doctor in the borough. Hopefully children in the future will not have to wait to be comfortable, especially when their lives are short and time is precious.

 Before I finish there are some people who Richard and I would like to thank. People who played a big part in our little girl’s life;

First of all to Dr Cartwright, who is still helping us through this very hard time; he was always there to offer advice and support in the care of Jaymie-Leigh.

To Hazel Haycock from the Children’s Disability Team, who always tried to offer support; special thanks for helping us on the day we lost JayJay.

To Sian Thorne, the community nurse who was always willing to help if we needed advice.

To Helen Schubert, Jaymie-Leigh’s physiotherapist.

To Maggie, our health visitor who is still visiting us and offering support.

To Liz Perham from Acorn’s Children’s Hospice who was there for us to talk to. Also to Jill Arens, the sibling worker from Acorn’s who talked to the children about any problems they were having.

Thank you to Beryl Holmes, the Genetics Nurse from Birmingham Children’s Hospital, who was always willing to help and guide us whenever she could.

To Mrs. Grosvenor, the school head teacher, for supporting Becky and Nikki and her ongoing involvement in setting up the fund.

    There were others who were briefly involved in Jaymie’s care; we would like to thank each and every one of them.

    I am sorry to say that there was a certain doctor (Dr S) who we feel wasted a lot of our precious time with Jaymie-Leigh through not referring her to the Children’s Hospital sooner. His communication skills were very poor and when dealing with parents of children with any form of illness or disability a certain amount of compassion is needed. He had none. We explained to him that Jaymie-Leigh was healthy and developing normally and he did not listen. You can never be too protective as a parent and at the end of the day you know your child better than anyone. If he had only admitted that he was out of his depth and referred her to someone who could find a diagnosis she wouldn’t have spent so much time in hospitals.

     We will never forget our beautiful little girl. She was very special and we miss her so much. Becky and Nikki keep us going but there is a big empty space in our lives. Nothing and no one could ever fill that space but we know we have to learn to live with it. It’s hard but we’re trying!


A poem for our little girl, Jaymie-Leigh.


We miss you so much now you are gone,

But we’re happy for you our little one,

For you no longer suffer, you’re no longer in pain,

You can laugh and play again.

So we cry our tears, but not for you,

For we know to let go was the right thing to do.

We’ll never forget your beautiful face

And now we know you’re in a better place.

We think of you each night and each day,

Well never forget you

Our little JayJay.

Love you always.


You can email Jaymie-Leigh’s parents at www.dawnparke@blueyonder.co.uk


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