At birth William was struggling to breath and he was very floppy. After a few days on a ventilator with no improvement our first thought was that it wasn`t due to his long traumatic birth and that he must have some sort of syndrome. Funny thing is with all the Googling, I’m sure all parents do at this point, we didn’t think to look into muscle conditions.
We had spent three and half months on a neonatal unit where William was on different breathing machines, which led to him breathing on his own for three weeks, after which we got to go home. He was still very floppy with no swallow, being fed through a nasal gastric tube and needing a lot of oral suction. We had a saturation monitor on him all the time as he would choke regularly on his own secretions and his heart rate would drop. We also had oxygen at home which was for resuscitation purposes and it was a good job we did. After being home for two weeks William’s O2 dropped and we were back in hospital with a chest infection.
At this time we thought William had a syndrome called sotos. The outlook was promising and with the progression of him breathing on his own after needing so much support in neonatal we were convinced this was our diagnosis but were still waiting for results. William spent two days on a children’s ward when his O2 dropped and heart rate raised and everything they tried was not working – O2 headbox, CPAP, so we were rushed through the hospital to intensive care while a consultant bagged William the whole way. This was the worst moment so far for me as William’s dad was not there and I thought we were going to lose him.
William was intubated for two weeks and during this time we had negative results back reference the sotos syndrome. We were in shock as we had convinced ourselves that was what we were dealing with, but after discussing the potential next steps we decided on a muscle biopsy. Whilst waiting for results William had been extubated and was on the nippy ventilator via a mask on high dependency. He was diagnosed on 17 June 2011 at exactly five months old and they informed us that his chances of reaching his first birthday were 1% and that we needed to make a decision to ventilate him via a tracheotomy 24/7 or to keep him comfortable and let him go.
When I asked the neuromuscular consultant what do parents normally do, she said they usually let them go as his quality of life would not be great and that we had to think of the wider family. I can’t explain my feelings at that moment, all I wanted to do was pick my baby up and go home, which if we had decided not to ventilate we could of done. William was smiling showing that he understood things we were saying. He loved bath times, cuddles and Mickey Mouse.
We appreciated that the consultants were giving us the facts as they knew them but we knew William had more smiles to give and more fun to have. We did discuss everything as we wanted to be 100% that we were not putting William through an operation and ventilation let alone all the daily cares like chest physio for our benefit. We discussed it with consultants and nurses that all knew William, however the decision was still ours to make as parents.
Parents make decisions for their children everyday but this decision was not one I ever imagined having to make, the pain, the guilt and the worry was never ending. We decided to tell our friends and family and the hardest part was telling our then 11 year old daughter that her baby brother who she has hardly spent anytime with, was not going to make his first birthday but it’s them moments that keep me going as I know I have to be strong for her and for William. Telling people knowing you are going to break their hearts is difficult but we needed everyone to have time to prepare and to understand that Williams time is so precious.
Once we had made the decision and were waiting for the tracheotomy operation we thought that it would be a good idea if each one of us would pick something we wanted to do with William and if we could make it happen we would. Mine was to go swimming, his dads was to go on holiday and his sisters was to have her christening day with him, which we had arranged for the coming November, it was booked the day he was rushed back to hospital with the chest infection. This was really helpful in taking my mind off things as I got started straight away organising a big christening for Rhianon and William. In the end it was brought forward due to the diagnosis and it was held in the hospital chapel in which we were lucky, as Cardiff’s hospital has a large chapel and it’s very beautiful and we hired the hospital sports and social club for the party after. I still have yet to take William swimming but the fabulous staff on high dependency arranged for me to have a bath on the ward with him which was amazing.
Keiron’s dream of going on holiday was a difficult one but I had got in touch with the local respite home and was planning on going there for a few days which would of been our holiday. This was all happening when we didn’t believe we would ever get to take William home. Once William had his tracheotomy he turned around completely and was getting stronger and stronger by the day. He no longer needed oxygen through his nippy and his chest was clearing a lot better with the physio. Being able to see William’s face after it being behind the mask for so long was amazing. I don’t think a child’s cheeks have ever been kissed as much.
When we started to prepare to go home, training was intense and scary at times with the thought that we were going home with our child on a ventilator. Consultants had said to us he is an intensive care patient going into the community, which at first definitely kept us on our toes, remembering them words re-playing them over and over. The support we received from the hospital staff was amazing, at times I felt close to them as I had been living and breathing hospital life for near on eight months, seeing the nurses doctors saving my boy over and over I could never explain in words how grateful I am for them. There were some people who I will never forget, like his consultants from the neonatal and pediatric wards, especially his respiratory consultant – he was amazing and Michelle the consultant who bagged William running through the hospital corridor. There are too many nurses that we cherish to mention by name, the physios especially Kath Roncheti, the community team which started with Rhian Greenslade and then Paula Cooper – they were my life line to everything. How could I ever thank these people – there are not enough words.
There were moments when I didn’t agree with certain things and I voiced my concerns. I think that would be the best advice I could give any parent in hospital with their child for whatever reason. Remember they are your child and the doctors know their stuff but they don’t always know your child. On some occasions it would be me just being an over protective mum not understanding what’s going on, like the first time I saw the physios giving William percussion and vibs, I thought they were really hurting him. Now I do them and understand that is what is keeping him alive. With William it’s all about managing his secretions. Another instance was when they came to take blood and I didn’t see any point and after discussing with consultant they agreed. Also asking questions, being involved as much as possible, this got us home a lot quicker, as once William was fit to go we had training, a lot of which we already knew.
We finally made it home on 24 August 2011 and it was amazing the hospital kept his bed as we didn’t have any carers at that time and myself and Keiron were taking it in turns to do night shifts, so that someone was awake with William at all times. After being home a few weeks we started to get cover from nurses from the hospital doing bank shifts which was awesome as the girls already knew William and we had our community nurse to thank for that. Life at home was crazy with all the people that were getting involved, which I must say, another piece of advice is if you think it’s pointless a certain person coming along, then never be afraid to make it known. They won`t be offended, as calls to the house can become overwhelming.
We found ourselves living each day as if it’s our last, from when we had William’s diagnosis we celebrated his birthday every month, this was another way of taking my mind off things. For his six month birthday we arranged for Mickey and Minnie Mouse to come and see him on the ward and for his seven month birthday we arranged a visit to the local park near the hospital.
Once we got William home we became more and more confident. We took William to Devon to visit friends for the weekend, this we thought at the time would be dad’s wish of taking William on holiday, but the following month we decided to take William to Centre Parcs which was truly amazing to be out and about with our family, all together doing things which we would have took for granted before William came along. It was truly magical. It was so magical we decided we would go back when they had their Christmas winter wonderland up and running, so the following month we went again.
William showed much love for the trees around and even to this day he loves to watch trees blowing in the wind and we joke about his obsession. Then of course we had Christmas which we were excited about but also dreaded as getting closer to Williams first birthday was scary. William had a few colds over the winter and thankfully we were able to manage them at home by increasing his chest physio three to four times a day instead of twice a day and we added oral antibiotics.
William was well and with his first birthday approaching we decided another trip to Centre Parcs to celebrate would be perfect. We might sound a little obsessed but being there as a family and doing normal things, even if it were for only a few hours a day was our little piece of heaven and William seemed to thrive every time we went. He got to go on the back of his dad’s bike in a trailer which required a little extra thought but we did it, after all, we were at a point in our lives where no wasn’t an answer. We have to be careful with how long William is out and about, as he goes onto a dry circuit on his ventilator which can dry up his secretions and cause him to plug off (close his airway), so staying in sometimes with the open fire in the villa looking out at all the trees was the perfect alternative.
We discussed as a family how well William was doing and what we should plan for the future, William’s dad is in the military and they had based him at the local Careers office so he could be around when needed for William. This was only temporary so we had to decide what we wanted to do. We decided that we would move to the home of the Royal Marines in Lympstone Devon. This gave Keiron many different job opportunities without having to deploy.
We have been very lucky with having the support of the military behind us as. Not only did they make sure I had Keiron around when he was needed and the fact we had no worries of his wage being cut but they also helped out with supporting us via charities for a disabled access vehicle and most recently they have funded a special base for William to go on the back of his dad’s bike as he has out grown the set up we had for the trailer and he loved the speed and views like any other two year old. (Wow that is something I didn’t think I would refer to William as is being two, but we are nearly there).
As William is under three we were not entitled to any mobility help from the government which is ludicrous, as getting him in and out of the car whilst attached to his ventilator, sats monitor, feed pump and also having his emergency equipment to hand was not practical and more importantly not safe. We had taken quite a large cut in our household income with me having to leave work and rely on the little benefits that we get.
Every thing was set for us to move to Devon and William ended up being admitted to hospital with a collapse on his left side. He was fabulous within himself and had even started anti gravity lifts with his arms but his pressures had gone up on his ventilator so we knew something wasn’t right. This had been his first admission since we left in August and at first I was terrified as I was thinking that was the end of our time at home, this was us back in for months on end but I was over reacting – only three nights in having intense physio and we were able to take him home again. So back to packing boxes and contacting every professional involved in William’s care to let them know of our big move.
We had to take our families feelings into account when we planned to move, as although myself my husband and daughter were happy, we worried that our families would miss William growing up. Our parents were happy that we were able to look into the future for the first time since William was born and we were making plans. Obviously they miss us all but I ensure I keep them up to date with William’s progress through the internet and they visit us often, which is very special, as they get to see both children for days at a time, as before, when we lived round the corner, it was an hour here and there.
The move happened in June, actually the day after William had his gastrostomy operation, although it was hard work and tiring at the time, it was worth it. Our move has given us a new outlook and the quality family time we got over the summer months on the beach and afternoons in the garden are priceless. Now winter is here and we are planning another trip to Centre Parcs for their winter wonderland with William’s new wheels to go on the back of daddy’s bike.
Willliam has had another admission in October for another collapse on his left side which again we treated with intense physio and was home after a couple of nights. He now has anti gravity movements in his legs and arms, can move his head from side to side and even rolls onto his side whilst in his cot. There are talks of him getting a standing frame and we have splints and gaters to help get him ready for this. We have a package now and the girls are fabulous with William and it’s been great for us to get into a routine. He is attending honey lands once a week which is an assessment centre and we have portage come also once a week – this really helps with his development and gives us great ideas of activities to do to stop William from getting bored.
We have all started a hobby since moving to Devon. I have joined a choir, my husband has joined a football team and my daughter has joined cadets. I think these things are really important as not only do they give us time away from the house but also we all belong to something which gives us is a really good boost.
William is continuing to improve and he likes to play on his iPad, watch DVDs, play with his toys and even go for the odd bike ride. From time to time, he is still a bit different but he is our different and special boy who is very inspirational and he makes us very proud as parents.