Before Arthur was born, I had been sick throughout the whole pregnancy and couldn’t wait for him to be born so that everything could get back to normal. We had 3 other children, so we weren’t new to it at all. The tests and scans were all good and we were repeatedly told we were having a ‘healthy little boy’. On the day, when they lifted him out, he made a funny noise and I looked at my husband and said, ‘that’s definitely not a good noise’. Immediately the doctors and midwifes started to work on him and soon called more doctors in to help and then after about 10 minutes told us they were taking him up to NICU [neonatal intensive care unit]. I said, ‘I haven’t seen him yet’ and a kind nurse scooped him up and held him under my nose for a few seconds before they all rushed off with him. I was so grateful as I didn’t know if that would be my only chance to see him. I couldn’t use my hands, but I nuzzled him with my nose. He was absolutely perfect. A gorgeous boy!
My husband and I sat in recovery and the other children arrived excited with cards and presents and balloons and we sat all day with no baby, and no news. Finally, as the other children prepared to catch the evening bus home we suddenly got a call that we could see him. I was wheeled up in my bed to NICU and the children had literally a few seconds each to peer at him through the incubator glass and then had to go. He seemed to have a lot of tubes and wires all over him – I’d never seen a baby in real life with all that apparatus on – it was so scary! We just didn’t know what to think! They got him out after a while for me to hold but after about a minute he started to deteriorate so they put him back in the incubator. He felt very hard and stiff but smelt wonderful and was absolutely cute! I was taken back to the ward, but I got out of bed straight away even though I’d had a caesarean and just kept going to be with Arthur, night and day. It was difficult because I was in a lot of pain and often missed my meds because I wasn’t on my ward – but I just couldn’t bear to be separated from him – especially as I didn’t know if he would survive. The doctors told us they were very worried about him and that there was something seriously wrong.
In NICU the staff were absolutely amazing. He received the best care and so did we. But it was exhausting and worrying, and we just felt so shocked. We had to travel in from Weston-Super-Mare every day because we had the other children at home so couldn’t use the Ronald McDonalds house. I decided I needed to spend at least 8 hours a day with him, which I did and even within a few days the nurses were noticing that he knew who I was and cried less and settled better when he was with me. That was very comforting as I worried about how the separation might affect his attachment to me and I filled his cot with stimulating pictures and sang and talked to him constantly. The doctors were brilliant and ran every test they possibly could including one they had never done at Bristol Children’s Hospital before. They were so thorough and within a week we had a full diagnosis. We were so fortunate to have such a knowledgeable and motivated team around him. He had a Bilateral Vocal Cord Palsy and Bilateral Perisylvian Polymicrogyria/Worster Drought Syndrome. The doctors took us into a room to give us the news and gave us a very bleak prognosis – we didn’t know if he would survive and if he did we didn’t know whether he would do anything at all. It was devastating, and our immediate thought was ‘if he can’t do anything how will we make him happy’? We both felt exactly the same about him though. We both said ‘even with that news, when we sit here holding him he just makes us feel so happy! He’s so perfect and wonderful – and although we are filled with fear and sadness, we are also filled with overwhelming love and joy. The worst thing was the not knowing – no one could predict how he would develop. We decided the best way to face it was to assume he would do nothing and so that everything he did was great news. So, as we gradually found out he could hear, see, etc we felt really pleased and thought of more and more things he would be able to enjoy in his life.
He was in NICU for two weeks. Once they knew what his difficulties were and that they weren’t going to go away they started training us up to care for him.
We learnt how to feed him through an NG tube, how to pass it through his nose into his stomach, how to suction him when he choked on his saliva and some basic physio to get us started. I didn’t think I’d be able to do any of it as I never wanted to be a nurse as I was always so squeamish – but it’s amazing what you can do when you have to! I didn’t want to let him down and I preferred to do it myself than have someone else care for him. When we were in NICU we were in a bit of a bubble because although it was really intense and worrying we were all so well cared for and supported. When it was time to take him home they told us we needed a special car seat else we couldn’t take him home. I just assumed it would be provided but then realised we had to pay for it! It was very expensive, and we had maxed out our credit cards with all the traveling back and forward to the hospital. Luckily there was a really helpful lady at the hospital who put us in touch with a charity who bought Arthur the car seat. It was the beginning of us realising it was going to be very different at home, with much less support and not knowing where to get things from and who could help. On the way home he went blue and we had to pull over and get him out the car. The next few days he went blue every time he cried, and we were constantly panicking and calling the ambulance. NICU have an amazing team that visit you every day for a while and, though the first few days were so hard, they helped us so much – getting us equipment and medications we needed, retraining us and emotional supporting us all. When they stopped coming we just felt alone with it all. It was overwhelming at that point. He needed 24-hour supervision and care with tube feeding every 3 hours around the clock, meds, suctioning and regular choking first aid. It was absolutely exhausting.
I just kept feeling so guilty about my other children who were not getting enough of our attention, especially our 2-year old who had to be eternally patient while Arthur was fed (which took 40 mins each time) and had all his crises managed.
Arthur didn’t sleep for more than an hour at a time as well as night feeds, so we were soon massively sleep deprived. Our days consisted of hospital appointments (at least 4 per week in the first year). Many of these were in Bristol so not driving, and my husband being at work that was a day trip on the train every time. It just became a way of life for my 2-year old and that made me so sad. Understandably she became very clingy and attention needing. Thankfully she absolutely loved him from the start.
Some days I really felt I couldn’t go on – we were absolutely shattered. Providing 24-hour care in this intensive way with just the two of us and my husband working was impossible. I had a constant headache, felt too sick to eat and felt like I was about to fall over a lot of the time. We kept asking for help but there didn’t seem any available. By 6 months I was on my knees and crying on the phone to professionals saying I couldn’t cope anymore, which was an awful and humiliating experience. I just didn’t know how I could maintain this. One day I went for coffee with an ex-colleague and was telling her what a state I was in and she said, ‘have you used up all your days at Charlton Farm then?’ I didn’t know what she was taking about – I am sorry to say I had literally never heard of them. She got out a leaflet and showed us and my husband and I couldn’t believe it! ‘You mean there are beds there and everything? And we can actually sleep?’ She told us loads about it but I wasn’t really listening, I just kept thinking about sleeping for a whole night in a bed. It seemed too good to be true. We asked to be referred and were accepted very quickly and given an emergency stay before our actual allocation started in the April.
I’ll never forget my first visit. I just cried – it was like actual heaven!
I’ll never forget my first visit. I just cried – it was like actual heaven! I couldn’t believe that such a wonderful place existed. The staff that met us and showed us round were unbelievably kind and we were just overwhelmed by how every single thing you could ever need had been thought of and provided. We said to each other immediately that it must have been set up by someone who had been through what we were going through. Later of course we found out that Eddie (the founder) and his wife had been, and I was fortunate enough to meet him and be able to thank him personally for all he has done for families such as ours. Before we found Charlton Farm, people kept asking ‘what is it you need’ and we would say ‘we don’t know’ and when we got to Charlton Farm we both said ‘This! This is what we need’. I slept for hours and hours and hours on my first stay, and still do! We’ve been there over 2 years now and still sleep is a big element of what we get from our stays. However, the more we went, the more parts of it were appreciated.
For Arthur he has a beautiful fun room, set up just for him every time he goes, with his name on the wall in bright colours. It might be farm themed one time and Peppa Pig themed the next.
The staff are so capable, attentive and caring that I can, for the only time, relax completely, knowing his every need and so many of his wants will be met.
They meet all his medical and personal care needs but also give him endless hours of fun, playing in the soft play, garden, music room, art room, sensory room and take him out to see the farm animals and even regularly take him on days out to the Zoo, the beach etc. They have so much more energy than I have and just fill his day with laughter. He loves all his carers and you get to know them so well over time that it just feels like being part of the family.
The family rooms are so clean and well furnished with facilities to make tea etc and en suite bathrooms it feels like being in a hotel – so relaxing – with joining rooms for siblings. The windows look out onto the farm land and I wake up every morning and look out at the sheep or cows after a good night sleep and feel so immensely grateful. That feeling never ever wears off.
Anyone will tell you that meals at Charlton Farm are amazing! Home cooked, with plenty of choice, all round a farmhouse table, and no washing up! It is clear that all the staff put so much love into their work that every meal they cook, or garden they tend, or bedroom they clean - they bring the best part of them to that task and it shows - it genuinely feels like a gift. There is so much love in that place, it warms my heart so much and replenishes me when life at home can be so tough at times.
There is always someone to chat to or have a bit of fun with if you are in the mood. And if you can’t sleep when you arrive and just feel tearful because you are so tired (it happens!) there will always be someone lovely to chat about some of the difficult things you’re going through and share a hot drink – even at 2 in the morning. When they ask me what I intend to do each stay – I always say the same – ‘as little as possible!’ I sit in the garden or conservatory and have precious moments to myself. One of the difficulties I find in my life is that caring for Arthur (and then all the other kids) means I never get time to process the emotional stuff. If I get more bad news, like his head has stopped growing, or he needs an operation, or someone makes a pessimistic assessment, I just put it in a box to deal with later, because I just don’t have the time or strength in the day. The problem is you end up with a load of boxes and you just feel them weighing down on you. Charlton Farm is the one place you can really process that stuff and come away feeling renewed. You can find a quiet space on your own or find someone who will care and get all that stuff out and have a jolly good cry if you need to. And then you can just be a normal mum for once and splash about in the Jacuzzi with your kids without alarms going off reminding you about feeds, meds etc.
I have made so many special memories with my youngest daughter while we have been there too – quality time and attention just for her – midnight snacks, watching a film just the two of us, painting our nails and ‘swimming’ in the Jacuzzi. We laugh together so much and if you ask her what is good about Charlton Farm she will often say ‘Mummy is always happy at Charlton Farm’. She even got to go with Arthur on an aeroplane to meet Santa – which was pretty much the highlight of her whole life! Such precious memories for all of us.
When I first had Arthur people used to say, ‘cherish every day you have with him’ and it used to make me feel angry because I thought ‘how can I? I’m so shattered all the time’. Since we have come to Charlton Farm we have been helped to make so many special memories and gradually we started to make them at home too.
The Sibling Team are one of the best things about Charlton Farm.
Even our older daughters are never left out – they are 17 and 21 now. At the Christmas party they still get goody bags but with grown up stuff in them like lip balm and nail varnish. They are never excluded from any activity and given a warm welcome from everyone. This is so important because teenagers and young adults can easily feel awkward and left out of things because they are not a child and not an adult either and aren’t sure where to slot in. Charlton Farm makes sure my daughters never feel left out and that we feel like a proper family when we are there. There are loads of activities and things to do for older siblings too.
Another aspect of Charlton Farm which has been exceptionally useful is finding out about equipment and services. We noticed early on that they have a lot of really useful equipment (bath aids, P-Pod seats, specialist beds etc) – we just didn’t know what to ask for in the community and no one seems to tell you what’s available. Seeing and using things at Charlton Farm has helped us identify lots of things or ways of doing things that have made Arthur’s life a lot more comfortable and our life a lot easier. There is always a doctor there as well who is always very willing to discuss any concerns you may have about your child or their illnesses or disabilities. That can be really reassuring. It was also very hope-inspiring early on seeing so many older children so happy and having fun despite their challenges – it made us feel more confident that we could give Arthur a happy life despite everything.
At the moment we get 12 nights a year at Charlton Farm and can ring for support at any time. We would literally not cope without the love, support and practical help they give us. I genuinely believe that they have helped to hold our family together. Every time we go back home I am counting the days until we are back with them again. They give us warmth and hope and a level of understanding that you just can’t expect other people to have – even most of your friends really – because this is just such an unusual situation to be in. I honestly feel completely at home there and if the worst does happen, it will definitely be the place we want to be. No one can control what happens, but they can just come alongside you no matter what, and that’s what all the amazing staff at Charlton Farm do.
We would literally not cope without the love, support and practical help they give us.