Two children reveal the impact of delay in scoliosis treatment on their lives

In a new report, the Children Ombudsman has voiced huge concerns ‘about the serious and ongoing violations of the rights of children waiting for scoliosis treatment’. Two children whose surgeries were delayed reveal the physical and psychological impact of this delay

Delilah’s Story

I was diagnosed when I was eight years old, in 2011. We didn’t know about it until I fell off the swing we have on a tree in the back garden.

My mum is a nurse and she was looking at my back to see if I had injured myself and she noticed that something wasn’t right with my spine. We went to Our Lady of Lourdes Hospital, Drogheda, and they diagnosed me with scoliosis and referred me to the consultant in Crumlin. I think I was already about a 40-degree curve at that time.

The first treatment the consultant advised was to refer me to go get a brace. They knew straight away that I would need the surgery at some point but they wanted to stabilise things and for me to get older and not be growing as much before I had the surgery. I was eight years old and so at first I thought it might be kind of cool to have a brace, but it didn’t end up that way.

First, I waited six months for the brace but they ended up making me the wrong type. I wore it for about six months until my next appointment in Crumlin. The second the consultant saw it on me he told me to take it off and that it was not doing any good. He referred me for another one, which was the right type, but that was a year after I had been told to get it. My brace was very uncomfortable and I would often have bruising or bleeding, which they told me was very uncommon. In primary school, I would have to go out of class to take the brace off because it was so painful.

Once I started growing, things went downhill and the curvature increased. My hips were sore and I had internal pain all the time.

It got more difficult to do things. I was hunched, you could see it. My back, my shoulders, legs, and hips, they were all out of place and I was bent sideways. It’s a big thing when you are young, how you see yourself.

I knew the longer I waited, the worse it could get, I just didn’t realise how bad it would get and how serious the operations I would end up having would be.

Emotionally it was draining, constantly feeling like I couldn’t do stuff, missing activities, missing school. I had appointments every six months. At one of these, in 2014, when I was 12, I was told to throw the brace away, that it was no good for me anymore and that I would just have to go for the operation. I was told I was now on the surgery waiting list.

We had known I would need surgery from the start so I was prepared for getting the news. But then we just waited to hear when I would actually have the surgery. I was always thinking “maybe it will be this month”, but it never was. That was so frustrating. My parents were annoyed as well, they felt that there was no forward planning; all along, the hospital knew I would have surgery but they waited until it became critical before putting me on the surgery waiting list.

About a year after that, I was finally told that I was going to have the surgery.

I would have to go to England for it, but by that point I just wanted it done. In autumn 2015 we were asked if we would consider going to Stanmore (the hospital in England) for surgery as they were sending children over there. Although it wasn’t perfect we straight away said yes. We met with the consultant and staff from Stanmore. The consultant had been a surgeon to the royal family! We were one of the first to accept the offer of going over so we’d be one of the first surgeries.

We had waited a long, long time and then, after being told I could have the surgery in Stanmore, it was only a month and a half until the surgery. It was just me and my dad who went over. We were fortunate because we had relatives in London who we could stay with for a night before I went to hospital and after surgery as I wasn’t allowed fly for a while. Some people turned down going to Stanmore and I think the costs of going over there was part of the reason. The HSE pays for some but not all of the costs and it hasn’t been easy to get all that sorted.

By the time I had the operation, my spinal curve was 90 to 100 degrees, which is a lot. Because of that, I didn’t know if I would be having a one-part or two-part surgery and they wouldn’t know until they saw inside me. It ended up that I needed a two-part surgery because of how severe my curve was. That was disappointing because I would have to stay in hospital about a week longer and because, if they had done it earlier, I could have had a one-part operation, which would have been easier and less painful.

They were big operations. They opened me up and then they had to move my organs to one side so that they could work on one part my spine. They also had to cut away some of my ribs.

Then they had to wait a week before operating on the other part of my spine. I was prepared for that but the thing that surprised me was that they had to put a chest drain in me between surgeries because they had to collapse my lungs. Out of everything they did, that was the most horrible part.

I remember crying and not wanting to move when all the physiotherapists were trying to get me out of the bed after the second surgery. When I first stood up after the operation I was very shocked. I felt very off-balance, standing straight for the first time in years.

I grew two inches because of the operation, suddenly I was taller than my sisters. We have a bit of a competition about height so I was happily surprised by that!

It wasn’t great coming back getting services. We never get anything from Crumlin without having to ask. We had a follow-up in Crumlin after the operation when the team from Stanmore came over but even that didn’t go perfectly as they didn’t have the X-rays that we had taken to review things. We were meant to find out if I could go swimming and cycling on my holidays to France. That was annoying.

In Stanmore, they thought that physio would be waiting for me. They told me that once I was healed I should start getting physio in Ireland straight away. After years of having a curve in my spine the muscles around my back and shoulders need to be worked on. But I still don’t have physio in Ireland, I’m still in pain, and my muscles spasm a lot. I’ve actually only just been told that I’ll be getting some physio next week.

The point of me going to England was that I felt I could get it over and done with and move on with my life. Nearly a year later, I still haven’t had physio and I’m still missing out.

Jane’s story

When we were on holidays in summer 2013, my mum noticed that I was leaning and that one of my hips stuck out more than the other. When we got home we went to the GP and he told me I had scoliosis and referred me for an X-ray. Actually, when I was told I had scoliosis it made a bit of sense to us as I had always had a bit of back pain when I was playing sports. That was September 2013 and I was at 50 degrees already so I was referred to Crumlin.

I had my first appointment in November 2013 and they put me on the waiting list for surgery that day. Anything over 50 degrees needs surgery. I was 12 at the time and it didn’t really register with me what I had or what was going to happen, nothing like how I felt near the end anyway.

It was idiopathic scoliosis, so we don’t know how or why it developed, it just did, that’s how it was explained to me.

I didn’t know anyone else who was getting or who had had the surgery, or scoliosis. It was isolating. I feel like if there was a community built around scoliosis to exchange tips and stories it would help everybody. Your parents and the hospital can help to a certain extent, but you are the only one who has to go into school or look at yourself every day. Mum had gone on Facebook for tips and found pages such as Scoliosis Ireland and found parents and people who had the surgery. We didn’t even know what scoliosis was before I had it. We had to kind of figure it out ourselves. Since my operation, Crumlin has put parents and kids from the area in touch with my mum to help with explaining and reassuring about things. That could have eased a lot of pressure on me if we had that.

At first, we were told it would be August 2014 when I would have my surgery, so we had our hopes set for that and, even in June of that year, they were still telling me August, but that rolled around and nothing.

And it went on and on like that, being pushed out by a month and then another month every time I would go up for an assessment. They would explain that emergency cases were being done, or someone else had been moved up the list, or there was no theatre time.

You’d get your hopes up every month, until, by the end, when they’d say it should be next month I’d just say to myself, OK I know it’s not going to happen.

During that time, my scoliosis was getting worse and worse. By June 2014, it was 78 degrees. I had a curve in my upper back that was arched and another curve in my lower back that was more like normal scoliosis. At that stage, I had given up hockey, running, and dancing, and all the other stuff that I did. It was a lot for a 13-year-old to deal with.

By September 2014, I was over 96 degrees, up from 50 in one year.

I had gone from very little pain, to pain all the time, having to carry paracetamol in my school bag. I’d come home and basically be crippled and just have to lie down or sit against something warm to help with the pain. And then, at the very end of it, just before my surgery, my ribs had begun to enclose in on my lungs so I was having trouble breathing and I had a lot of indigestion because my food pipe was bent with my back. It was getting really bad.

On top of that, mentally and emotionally I was starting to hit early puberty and I was feeling like I didn’t look like anyone else because my hip stuck out, I had a lump on my back, my shoulder was uneven, and I leaned to my left and was very collapsed on myself. It made me very self-conscious and it was draining to feel that way. My whole upper body was squished into itself so my clothes didn’t fit right, I didn’t like wearing tight clothes that would show off my back problem and I didn’t like looking in the mirror because I knew I looked weird.

In the hospital, they would use the word deformity in front of me a lot. I know that’s what it is, but when you’re 13 or 14, it’s not nice to have adults talk like that and say things like “your deformity has got significantly worse” right in front of you. The consultant was good at talking to me and explaining, but he wasn’t always available when we went up, so we wouldn’t always see him; when we didn’t it wasn’t always as easy for me, it could be very formal and ‘doctory’, and, ironically, I felt a bit out of place in a children’s hospital!

I was told in February 2015 that I was going to have my operation and the date was set for March. Because my curve was so bad by that point I was going to need two surgeries. Initially I just thought it would end up being another “it’ll happen next month” thing but as the date came closer we started to feel like it was actually going to happen this time.

We went up the night before my operation, but even then, we didn’t know for sure if we had a bed because they couldn’t tell us until we got there. We were just praying it would go ahead. Thankfully, it did and I had my first surgery the next day. It felt surreal, we had waited so long and now it was happening, it kind of goes by you in a blur.

Then I was a week in hospital before the spinal fusion surgery. That week in hospital was not fun. It was painful, especially the chest pump. I spent most of it asleep.

The ward that I was in was very run down for a spinal injury ward. There were no facilities for parents to stay on the ward and there were two children in each room, which is a bit uncomfortable. There were three broken wheelchairs on the ward to share between all the kids. There was one shower and three toilets. I couldn’t eat much but the food was just not nice or very healthy. At night, there were only two nurses on duty to look after children who couldn’t even sit up on their own, let alone go to the toilet or whatever. The nurses were fantastic, though, and took great care of me.

When I woke up after the second operation I had a big cry. I had this moment when I reached down my body and I felt my rib area and they weren’t sticking out and then I reached down where my hip was and it wasn’t sticking out and then I started bawling. It had been so long since I had seen myself not deformed, twisted, sore, and broken. There was also so much relief and happiness that it had finally happened after a year of waiting, complaining, and giving out to people.

The surgery went really well and they got a better result than I could have hoped for. I was at 108 degrees at surgery and they got it down to 18 degrees. I couldn’t be happier with that, but it could have been even less had they done the surgery a year or so before that.

The recovery took a while. I went to physio for about a year after coming out of hospital. They gave me shoulder and core exercises to get me back on my feet. I did get a lot of pain in the months after the operation as my muscles were still stretching back to where they were meant to be and that kind of thing. But 2016 was a good year for the pain, I still get the occasional backache or whatever but it’s better.

I’m basically back to normal and how I should be, but there are some issues and restrictions. One of my shoulder blades sticks out. I think that’s because my ribs are a bit deformed from it happening while I was still growing.

They removed four discs in my vertebrae to make sure the bones would fuse together and not go back to the way it was, but that has meant that I don’t have as much flexibility. I have to keep my back straight because I can’t bend my back any other way, so things like tying my shoes is a bit weird and I can’t relax into a couch, little things like that. It’s not painful, it’s just restrictive. I’m all one solid object in my upper body.

At the time, I was just so relieved to have the operation done but now, looking back, it’s annoying and makes me angry. My operation could have been so much simpler and better. I wouldn’t have been out of school for months afterwards. I wouldn’t have been in hospital as long. I wouldn’t have taken a bed that someone else could have used. I wouldn’t have had the chest pump while I was in hospital and I wouldn’t have taken up two theatre dates instead of just one. I have two giant scars now, one from my ribs to my belly button and one down my back, whereas if they had done it a year earlier I would have been left with just a tiny scar on the middle of my back, less pain, less time recovering, and have more movement in my back.

But really, I’ll deal with all that, I’m just glad I don’t have scoliosis anymore.

The surgery gave me a new lease on life. I could start afresh. I basically felt like a new person.

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