On 31/10/12, after 3 days of labour, our beautiful baby boy, Joshua Robert Stamford was born by C-section. Yes, it was Halloween! I can remember a nurse in the labour suite, joking about the Halloween themed birthday parties he would have!
I was exhausted but elated. The hospital were very pro breast feeding, which, like most new mums, I found hard. Joshua wouldn't latch on and when he did he'd sleep more or less straight away. Still, I persevered as I was determined to be 'mother earth'. Finally, we came home. Joshua was our first baby and we were so proud. I can remember, we popped to Tescos when he was about 2 weeks old and I swear, I was standing a foot taller. I loved people stopping me to ask his name, how old he was etc. Both my husband (Lee) and I, couldn't be more happy, although sleep deprived!
As the weeks went on, I had a feeling something wasn't right. Joshua lost more than average of his birth weight, so we introduced combined feeding. His weight slowly improved and I moved solely to bottles as I was paranoid he wasn't getting enough from me. That made me feel quite inadequate, but I tried to convince myself it was the right thing (of course it was).
Lee and I attended NCT classes and had (and still have), a fantastic group of friends through this. When we met up, I noticed Joshua wasn't moving his legs as much and they looked very 'frog like'. He also favoured the right side of his head. At his six week check, I mentioned my concerns to the GP. He agreed his muscle tone was a little low, but to continue tummy time and if it didn't improve, to go back. He said it was normal for babies to favour one side of their head, so I tried not to worry. Tummy time was horrible. Joshua cried and didn't move, so against advice, I started to do this less and less. It became so stressful. Feeding was still slow, although I started to accept, this was just him.
I went back to the GP, as I was still worried about his legs. Joshua had also developed, what sounded like mucus on his chest. He didn't cough it up and was never sick, (which I put down to him being a good baby). So, I mentioned this too. We were given saline for his nose and referred for a scan of his hips as it was thought his hips were out of alignment. There was nothing wrong with his hips. By now, I was really concerned. His head, legs, lack of movement, feeding taking ages, sounding like he couldn't clear his chest, not liking or lifting his head during tummy time. Comparing him to the other NCT babies, he just wasn't developing in the same way.
So, back to the doctors and a referral to a paediatrician. He was about three and a half months now. We received a copy of the referral from our GP which mentioned all his symptoms and confirming, no muscular dystrophy in the family. That sent alarm bells ringing although I was convinced Joshua just needed physio. I tried to put my concerns to the back of my mind and enjoyed his smiles, gurgling chats, singing and playing.
Finally an appointment with the paediatrician on 28th Feb 2013. She examined Joshua thoroughly, looked in his mouth, held him, checked his reflexes, and asked lots of questions. Whilst Lee was getting Joshua dressed, after the examination, I sat down. She went quiet, put her hand on my knee and said "mum, I'm very concerned about your baby". I'll never forget that sinking feeling. This wasn't just his muscle tone, it was serious. She organised for blood samples to be couriered to St Thomas' and asked us to wait for a while and she'd call us back in. We couldn't believe this was happening to us. This wasn't in the plan, not how it was meant to be. We were so frightened.
The paediatrician then told us, she thought it may be SMA. What on earth was that? she didn't tell us much but asked if we had any questions. Well, yes of course we did! There's a cure, right? what's the treatment?, when can it start?, will he be disabled?, he's not going to die, is he? Her answers were our worst nightmare. She kept asking us about his breathing at night and if we were concerned to get an ambulance. I hadn't been concerned, but I was now! Joshua was my first and I assumed the way Joshua's chest looked was normal. How can you process this and just go home, we just didn't understand.
Things happened quickly after this. I became so paranoid about his breathing that we were at our local hospital the next night. The hospital didn't seem concerned. That week the appointment came through for the Evelina and the 24 hours before, Joshua seemed worse, he was unhappy, feeding slower than ever. When we got to the Evelina, he went downhill quickly. He was sick (which he never was), had a temperature and his breathing became laboured. Within 4 hours we were in PICU on a ventilator. What the hell was happening? We'd only come for a consultation. Good job we did though. It's as if Joshua knew and had been holding out. He finally couldn't manage anymore.
Joshua had caught bronchiolitis. The following day, his blood tests were in and we were told Joshua had type 1 SMA. We couldn't process this. We'd had no time with him. He was already so poorly. He had physio 2-3 times a day, to clear his mucus and suction. He was so brave though. He seemed to smile his way through, even beaming at the nurse who gave him a suppository! The doctors tried Joshua on BiPAP, but he'd already been on the ventilator for two weeks and his muscles had been weakened by the virus and the fact that the ventilator had been doing all the work for him. You could tell he was unhappy on BiPAP and was not recovering, so we decided he should go back onto the ventilator, for us to make the hardest decisions of our lives, something no parent should have to do, choosing where and when to spend our last days with our beautiful blue eyed boy.
The doctors, nurses and physios were exceptional. We decided Demelza Children's Hospice, in our home county was the right thing for us. We chose when and even asked if our favourite nurse could come and she did. In the meantime the staff arranged for us to have a private room with Joshua. We sang songs (I was always singing, badly to him! and he responded), we had time with our parents and closest friends. We had him Christened and staff helped us to take him to the London Aquarium. We had three specialist nurses, breathing and suction equipment, but it was worth it. It was Easter and the nurses got the paints out so we made Easter cards with Joshua, for the grandparents, an Easter bonnet and we took as many photos and videos we could.
The trip to Demelza was horrible but we were so pleased we did it. After the ventilator was taken out, we weren't expecting him to still be with us the following morning, but he was! He opened his eyes and greeted us with one of his beautiful smiles. For the next 24 hours we were able to spend quality time with Joshua, at Demelza, using their sensory room, music room, had his hands and footprints cast in clay, walked around the beautiful gardens and had professional photos taken with him. We didn't want it to end.
Early the following morning, after a night of Lee and I taking it in turns to hold him and watch over him, Joshua opened his beautiful blue eyes for the last time and then fell peacefully asleep, on 4th April 2013.
We are so grateful Joshua came into our lives. His time was short but he was surrounded by love all the time. He touched the hearts of everyone he came into contact with.
The last 16 months or so, have been so tough and life feels empty without him. We would desperately love another baby but there seems so much to consider now. I'm sure with the support of our family, friends, Demelza and SMA Support UK, we'll get there. I'm sure Joshua will be guiding us in his special way too.
We hope that with awareness of the condition comes funds and with funds comes research and with research, comes a cure. No one should have to suffer from this devastating illness.
We love you, Joshua, more than words can say,
We miss you more than the longest of days,
Treasured and precious memories always.
We love you to the Moon and back,
Big hugs and kisses from
Mummy and Daddy xxxxxxxxxx