MATTHEW JOHN CHAD 17.6.04 - 22.9.04.
Matthew was a most wanted, precious, beautiful baby with lovely big blue eyes, in fact I'm sure he must have thought his name was 'gorgeous' the amount of times I called him that. He was born on his due date and the birth was normal. He was very tired for the first few days, the nurses said he was a lazy little boy, I tried to breast feed but to no avail so we started on the bottle, he loved this and started to drink for England. While in hospital, Matthew had a couple of tests, one for the amount of glucose in his blood and one for jaundice, both of these results were normal so at long last we could go home with our healthy little chap.
Matthew was an absolute joy, he wasn't screaming 24 hrs a day, took all his feed, he was so easy, well easier than I imagined a baby would be, we took him around so many people just to show him off, I can honestly say it was the happiest I have ever been, Matthew enjoyed himself too, he was so alert and loved seeing all these different people. Time went on and we were on cloud 9 with our new arrival. He was such a clever little boy and even said hello at 7 weeks, he used to repeat it when you said it to him, and thank goodness we have it on tape, otherwise you would never believe it.
I started to have concerns when I thought that Matthew wasn't moving his legs, as much as I thought he would be, he'd be about 5-6 weeks old, I asked a health visitor about this and she just said that in time he would do. The next problem we had was Matthew's right hand, my mother-in-law mentioned that it was contorted. I hadn't noticed and was surprised how I hadn't. At this time I was absolutely passed myself with worry, thinking that maybe Matthew had cerebral palsy or something like that, Matthew would be nearly 8 weeks old now, so I decided to wait until the 8 week test of Matthew at the doctors surgery. At the appointment, I was dreading what I was going to be told. Matthew was examined and he passed all the tests except for the tone of his muscles, the doctor thought that the problem would solve itself and that it was probably caused by Matthew being small at birth, he only weighed 5 lb and 14.5 ozs. He said he would arrange an appointment with a paediatrician just to make sure everything was fine, but he was sure it was. I asked about his hand and the doctor didn't seem to be too bothered by that, he said he didn't think it was cerebral palsy because there weren't any other symptoms. I was crying at this point, so relieved that everything was going to be fine. Matthew's feeding at the time wasn't brilliant but the doctor said babies can be like that so not to worry.
One week later I went back to the doctors surgery, a bump had appeared on the back of Matthew's head and seemed to be getting bigger daily, I wondered if this had anything to do with his feeding which was still not as good as it used to be. The doctor examined him again and said it was perfectly normal, that we all have them. I asked about whether physiotherapy would help on Matthew's hand. The doctor said that it would but that he didn't think Matthew would need it because he would simply grow out of it and mend it himself. The doctor said that Matthew in his opinion would grow up to be a perfectly healthy little boy. When the doctor said this, I was overjoyed, I can't express the relief I felt, all my worries had gone, everything was perfect again. Days passed and I remember looking at Matthew's hand and noticing that it was starting to straighten out, the doctor was right, he would mend it himself. Matthew was also getting more movement in his legs, each day we would put our fingers under his knees and let him kick, it was wonderful to see the movements, the only place where there was still some worry was his head, Matthew could move it from left to right but he had trouble lifting it.
I visited the doctor's surgery again two weeks later to have Matthew weighed. I was shocked to hear he had not put on much weight, the same doctor saw him and was not happy with Matthew's body tone and asked if we had had an appointment through yet to see the paediatrician, I said no, so he said he would get in touch again with them so that we could have an urgent appointment. I left the surgery with that awful feeling of dread that I'd had 2 weeks before, but I just thought well at last we would see someone who knew all about children and they would be able to sort out any problems Matthew had, if it meant travelling backwards and forwards to Newcastle for treatment so what, at least we'd get Matthew sorted. The next day while I was at home, my husband John phoned me from work to say that the doctor had phoned him and that an appointment at Darlington hospital had been arranged for 12.30 that day. I phoned my Mam and asked if she would go with me, I felt I needed support.
My Mam and Dad picked us up and took us to the hospital. Matthew was still as alert as ever, always looking around and smiling. When we got there Matthew was thoroughly examined and weighed, he had actually lost weight. I was asked questions about my age, whether in the last stages of pregnancy, did Matthew move any less (it was my first full time pregnancy so I had nothing to compare it with, all I remember was that he did move every day otherwise I would have got it checked out), about his birth, (which was normal) whether there were any problems with muscles or bones in either of our families, (no previous history in either). I was a total bag of nerves, not knowing what they were going to say, we seemed to be there for hours. A consultant then came to look at Matthew, although his examination wasn't as thorough, he looked inside Matthew's mouth and mentioned something about his tongue to his colleagues. He said he would need to make a telephone call to his colleagues in Newcastle to confirm what he thought Matthew had. He came back and said that Matthew was seriously ill but he would want to talk to both me and my husband at the same time, he didn't want to tell us separately, I couldn't believe what I was hearing, I telephoned John and told him to come straightaway, at this point he had already finished work and was at home.
When John appeared my Mam went home so that the doctor could speak to us. This was the point when our whole world fell apart. He said that Matthew was seriously ill, that he had Spinal Muscular Atrophy and that there was no cure. John and I looked at each other in disbelief, we asked how long did Matthew have, and he said weeks or months, we hugged each other as we burst into tears, this wasn't happening, it was all a nightmare. At this point Matthew went very pale, and the next thing we knew they were putting an oxygen mask on him, I thought we were going to lose him then, we hadn't had him christened, I needed for him to be christened before anything happened to him, there was a chaplain in the church who said he would christen Matthew that night, the doctors had stabilized Matthew. I can't really explain how we felt, it was total shock that we were going to lose someone who had changed our lives so much, someone who we should have been allowed to raise and watch grow, fear, things didn't feel real, how could this happen to us, why, when we would have brought Matthew up to be a wonderful human being, our love for him was just so great, and there was nothing we could do, totally powerless.
I telephoned my Mam and told her what the doctors had said and she just couldn't believe it, we took him there to get checked over, not to be told something as awful as this. My Mam telephoned all relatives and told them of the christening that night. I held Matthew close to me, never wanting to leave him, he was just a baby and had no idea what was happening thankfully. Between that time and the christening a blood sample was taken (this would confirm the consultants diagnosis, but as he said, if he hadn't been sure he wouldn't have told us, he had seen two cases of SMA before in his 20 years of experience) a needle was placed in Matthew's right hand in case a drip was needed in the future, I just didn't want anything hurting him but knew it had to be done.
The next few hours seemed to be a bit of a blur, waiting for the time of the christening, Matthew just seemed to enjoy all the attention. Everybody appeared and we went in the next room for the christening, Matthew was already connected to the oxygen and had had a nasal gastric tube fitted, I just remember looking around at all our nearest and dearest, tears in my eyes and theirs in total disbelief, Matthew was as good as gold. We took pictures, and I was pleased we'd managed to get him christened, although it wasn't at the church where I would have wanted it to be. We stayed in total 6 days in hospital, with various people coming in introducing themselves, these would be our support once we got home, there were just so many, half I couldn't remember when they saw us the second time, everybody was so helpful but there was too much to take in.
Matthew was held constantly, he was so brave, still smiling away. There was a period of time where he didn't need the oxygen, but this only lasted about 3 hours, after this it was a case that he needed it all the time. Although we were told that we would have the blood test results on the Tuesday which would have been day 6, and which was also my birthday, we ended up having the results just 2 days after our admittance, which was very quick. We knew what the results would be, but it still hurt so much to hear the confirmation, there was just no hope. We managed to learn how to feed Matthew ourselves through the tube and get into some sort of routine, we just wanted to be home. The needle was removed from Matthew's hand so that was better.
Day 4 in hospital gave us some hope although very small. My brother had read a Sunday newspaper and in it was an article of a baby girl who had SMA Type1, and they were trying to raise £20,000 for treatment that was available in America, the child had a good chance of living until a teenager, if they were able to take the drug. Of course when we heard that we thought that would be the route to take, after all we would do anything to save Matthew. The next day we showed the article to the doctors and they read it but mentioned to us what quality of life would Matthew have, were we going to change our minds about not resuscitating Matthew if he stopped breathing? (we were determined not to put Matthew through any unnecessary pain for the sake of living longer, for something he couldn't overcome), more questions, we were told by the doctors that if we put Matthew on a ventilator they would never get him off it! But all we could think of was that if this drug had a chance of saving him, then we should give it a shot, providing that Matthew would benefit from it. Also on this day we had a visit from our local vicar, he brought words of comfort and blessed Matthew. He was surprised on how alert Matthew was, if it wasn't for the tubes, Matthew looked as if there wasn't anything wrong with him.
Anyway day 6 soon arrived and we were ready to go home, thankfully. The next day the hospital had arranged for us to go to Newcastle to see a professor there about Matthew. We went by ambulance, and the professor was one of the most sympathetic people I had seen. She explained all about the latest research in America and said that it would be no good for Matthew, for it would be unlikely for him to survive the flight, and even if he could, the drugs were just on trial and by no means a cure. She said it would be better just to spend and enjoy the valuable time we had left with Matthew. We were back at square one again, no hope.
All we could do now was try and do as many things as possible with Matthew, I wanted him to experience so much. We were told about the Butterwick Hospice and a visit was arranged. I can't recommend a hospice enough, they had a sensory room there, which Matthew enjoyed and he even managed to go for a swim on his second visit there.
We bought helium balloons for when we were at home, and fastened them to his pram, he loved watching them. We fastened some to his hands and he managed to move them, or we'd bring them down to him and let them go, his eyes followed them everywhere. At night at home, we would have our own sensory room, we'd put out all the lights then plug in the colourful tube, where Matthew could see bubbles and fish, we'd also play with a Winnie the Pooh toy where there was music and the images would show up on the ceiling, Matthew really seemed to enjoy this.
Each night whilst bathing him we'd give him some physiotherapy, so his joints wouldn't stiffen. Whenever we fed him he watched as we filled up the syringe for the tube, he was taking it all in. We would always though try with the bottle first just so it wetted inside his mouth, we were told that sometimes the oxygen made them dry.
The day before he died he was so bright eyed and you could tell he was enjoying himself although he didn't smile. The last couple of days he had lost his smile which hurt so much, for he was always smiling beforehand. We went to a sensory room we had in our home town a couple of times. We managed to get to the seaside.
Matthew only lived for two weeks from the day he was diagnosed, he went so quickly which was very painful to us but not to him. We were fortunate not to have to use suction machines on him. We managed to get out and about with the oxygen tank, and that last week at home (as well as in hospital), Matthew saw so many faces, family were so supportive, to which we'll be eternally grateful. You are given so many choices when you have a terminally ill baby, sometimes you wish the choices were made for you. When the time came for Matthew, we could have stayed at home, gone to hospital, or gone to the hospice. It was such a frightening time, at no time did I want him to suffer (as any parent).
Two days before he died we had a frightening experience, Matthew was very clammy and sleepy and seemed to be making strange noises, I was very worried so stayed up with Matthew in my arms, I didn't want him to be alone. It was in the early hours of the morning, and we decided to go to hospital, if there was any chance of Matthew being in pain then I wanted them to give him something to ease it. When we got to the hospital he was checked over, he had stopped making the noises. They told us that he was in the later stages, that there was nothing they could do. They were sure that he wasn't in any pain, but did offer morphine if we wanted it. We knew morphine would probably cause his breathing to be more shallow, and we were reassured that he was not in any pain so decided against it.
Although it was very late when we got home we still decided to go to the hospice thankfully, for that was the day that he was very bright eyed and went swimming with John in the pool, and also went to the sensory room. It is one of the memories that will comfort me I'm sure in time. On the 22nd September 2004 we went to the hospice again, Matthew looked a little pale. When we got there we used a biox-oximeter to check on Matthew's oxygen saturation levels. They weren't as they should have been. I started to panic, the staff there said that they would put up the oxygen level and check Matthew again, half an hour later they checked again and it was still low, Matthew was very sleepy. They advised for us to go to hospital just to get him checked.
We went back to Darlington, it took about half an hour, I felt that something was going to happen, and when we got to the ward I took Matthew out of his pram and held him, doctors checked him again and the readings were even lower, he seemed to take two breaths, and he was gone, a doctor who was most kind with his words checked his heart and Matthew had left us, he was just so peaceful, he looked like he was just asleep, there was no pain in his face. We told relatives and waited for them to arrive, it was now that we decided to go to the hospice, I didn't want to go home for some reason. All the family came with us, we changed Matthew into some clean clothes, and we arranged for our local vicar to come and bless Matthew. Then our relatives left. It got to midnight and something told me to go home, I wanted him to be surrounded by his balloons again. We decided to wait until morning. I held Matthew until about 1 am, then put him back in his pram, that was to be the last time I held him. We returned home and fastened all the balloons to the pram, it seemed so right to be there, the undertakers collected Matthew later that day.
Matthew was so loved by everyone, such a special baby. I want Matthew's story to be read, and something learnt from it by everyone. It's important to me that some good comes of his life, not just to people who were close to him, but to strangers as well. Although it has been so difficult to write this, and it has taken numerous attempts, I felt that it should be written to warn other parents on how quickly their child's life can go. I have read so many people's stories and their children have lived for quite a long time after diagnosis (in comparison). It is so important to cherish every day you have, and try to make the best of it for your child, they're oblivious to what is happening to them, so you must try, although it is very hard.
I'm so grateful for those last memories of Matthew for I know we did the best we could for him. All we can hope for now is more awareness of SMA, this in turn will lead to funds being raised, and this in turn will lead to a cure, so that other families don't have to go through such a devastating time.
God bless Matthew, who touched so many lives in such a short time.
-----
2006 is now here and I want Matthew's story to bring hope to people. Matthew now has a brother who we named Andrew, and he was born on 13.9.05 the day before my own birthday, and a lovely birthday present he made. It's been a very difficult time and I often wonder how we've got to where we are, and we've had to make decisions, decisions, which I would never have believed we would have to face, thankfully they were the right decisions. When we lost Matthew, he was not only our child but our family as well. It seemed so hard and unfair to think that we wouldn't be able to have a family due to SMA.
Three months after losing Matthew we decided to try for another baby. I was already 37 and time wasn't on my side. I was fortunate to fall pregnant straightaway. I was given the CVS test at 11 weeks. We had the results of the test within a few days. The wait was terrible, but when we had the results, the relief I felt was indescribable, I just crumbled in a heap. Andrew is now here and in time he will know and learn all about his brother and how much good he has done.
We've kept focused on trying to continue to do good work in Matthew's memory. We've raised thousands of pounds, done collections, planted a memorial tree and most recently had a plaque put on a bench in our local park. I've tried to get the press involved so that more awareness is made of SMA, I am determined to continue to do all I can, to help in the work of the Jennifer Trust. Matthew is so missed and always will be, I still shake my head in disbelief, and it would have been so easy to sink without trace, believe me, but then that would have been another negative, and it's so important to have positives, this I strive to do. We've had a lot of support, family, friends, Jennifer Trust and, the Butterwick Hospice, we still go there for counselling every 5-6 weeks. You need to grab and hold onto as much support as you can when you lose a child, for it is the worst thing that can happen to you. I hope Matthew's story has given hope.
God bless Matthew, who will continue to touch many lives. |
