No-one should go through scoliosis alone. With your help we can support people with scoliosis and their families
In March 2008, our third son, Adam was born. The pregnancy, labour and birth were normal. At around the age of 6 months, Adam started sitting....as normal. One day, when he was in the bath, we thought his back looked a bit odd. We put it down to him sitting in a funny position. But the next time he had a bath it still looked odd, like he was leaning too heavily on his left side. We spent a few weeks ignoring it, hoping it would go away, but just before Christmas I was with a midwife friend and showed her - her immediate reaction was to go to the GP. Our family doctor was the first to say the word scoliosis.
We were referred to our local hospital to see a paediatrician the day before Christmas eve. After a long discussion and a good look at Adam's back, we were sent for X-rays. It took both of us to hold Adam still, one controlling his legs, the other his arms. The X-rays confirmed a diagnosis of scoliosis. Adam was now 9 months old.
We were then referred to a scoliosis consultant. Our first appointment was between Christmas and New Year, for further X-rays, a detailed history, and a full examination. The consultant showed us the X-rays and told us that Adam's curve measured 21 degrees. He explained that given this measurement and Adam's age, he stood a 75% of self-correcting as he grew and that the approach would be one of 'wait and see'.
In January, 2009, we returned to the hospital for an MRI scan. This was to rule out any structural problems with Adam's spine. It was done under general anaesthetic - quite a traumatic experience because Adam's age made it difficult to access a vein. Adam became distressed and the decision was made to use gas to put him to sleep, which Adam fought. Thankfully, the scan showed no structural problems, and Adam's official diagnosis became idiopathic infantile scoliosis.
Our first review appointment was due in April, 2009; unfortunately, our consultant took early retirement unexpectedly, which created a huge backlog in the system. Consequently, it was October before Adam was seen – 10 months from diagnosis instead of 4 months. Adam was X-rayed and his curve measured. We were shocked to discover it had more or less doubled to 41 degrees; we knew it hadn't improved but had been hoping it had remained fairly stable and so were devastated to find out it had increased so much.
In the conversation that followed it became clear that we had to start treatment, that Adam's scoliosis had gone beyond the 'wait and see' approach, and intervention was needed.
Our best option at this stage was serial plaster cast jackets in order to encourage Adam's spine to grow straight, and to postpone any surgical interventions. We returned in mid-November for Adam's first plaster cast to be fitted: Adam was 20 months old. We were asked to arrive by 7:30am and were sent to a ward where we spent the morning answering questions for various health professionals and distracting Adam from his hunger by playing. Finally, the call came for us to take Adam to theatre around 1pm. Following our bad experience back in January, we had an extensive conversation with the anaesthetist before the procedure. As a result, this anaesthetic was extremely peaceful, for which Adam sat on my knee for a cuddle, unaware of the tube held just under his chin, gently wafting gas his way and once drowsy, a small mask was held gently on him as we transferred him to the trolley.
The procedure took around an hour and a half. We were called to recovery to collect Adam and it's fair to say he was pretty cross! His cast came right round his body, with a cut-out to allow space for his tummy to expand, under his left arm but over his right shoulder creating a sort of t-shirt arm on that side. Having weighed him before and after, we know he was instantly carrying about 2kg extra. Once back on the ward, he was given some pain relief and after an hour or so of sleep, he woke ready for food and drink, and soon after, began walking around. By 5.30pm the consultant visited to show us Adam's new X-ray: in cast, his curve now measured 18 degrees, a great first reduction. After another hour of observation on the ward, we were allowed home where we all began to get used to life with Adam in a cast.
The first few days were difficult; Adam was clingy, wanted lots of carrying around and cuddling. He seemed to revert, wanting us to feed him and not leave him - we spent the first couple of nights taking it in turns to sleep with him. But gradually he began to realise that he could still manage to do what he wanted to do, and if he couldn't, he found a new way of doing it. By the end of the first week, life felt normal again – we knew how to pick him up, had begun developing muscles to carry the sudden extra weight, were treating him normally and he was simply getting on with life as a 20 month old, even returning to his twice weekly nursery sessions. We quickly found ways of securing his nappy and dressing him. We found he needed 12-18 month trousers as they sit lower on his waist now, but that he needed age 2-3 year tops to accommodate the cast. Car seat, pushchair and highchair are used as before; the only main difference is bath time...now Adam lies on the kitchen worktop while we wash his hair over the sink, and then he paddles in a bowl of water while we sponge wash the rest of him – well, the bits we can get to!
In twelve months we've come a long way – admitted the problem, got the diagnosis, hoped for self-correction, felt devastated when treatment was needed, felt scared of the plaster cast fitting, and finally realised that we – and more importantly Adam - can cope with his curve. In three months time Adam's second cast will be fitted. His consultant has indicated that Adam is likely to move onto removable plastic braces from the age of about three years, with potential surgery when he is older. As no-one knows just how well Adam's spine will respond to the casts, we're keeping a very open mind.