As a parent, I never imagined that an ear infection could lead to the possibility of losing my son.
Last year, my 14-year-old son Joseph complained about an ear ache, so we did what any parent does and took him to the doctors. He was prescribed antibiotics and within two weeks the infection appeared to have cleared up, so he headed back to school. He didn’t last long there though, as he kept vomiting, so we revisited the doctors, where we were told it was just a bug.
But we knew it wasn’t. Joseph had lost his appetite, which was unusual, and he was very weak – he could barely walk. I lost count of how many times he was sick. We decided to get him checked out again and took him to Ipswich Hospital. He was so weak by the time we got there that we had to wheel him through the doors.
There was no way a simple ear infection could cause him to be so ill. He was kept in overnight in Ipswich Hospital. The following morning is one we will never forget. We waited for news; we just needed to know what was wrong and how he could become better. But the wait got worse. Much worse. That morning Joseph became unresponsive and he was whisked away for a scan.
The scan showed a mass on his brain. Sheer panic ran through my body as we were told it could be one of two things: either an abscess or a tumour.
The words circled my mind, and my thoughts began spiralling out of control – what would we do? What was going to happen?
Joseph’s condition was serious; in fact it was beyond serious. He needed to be moved to a specialist hospital in Cambridge called Addenbrooke’s. But his condition became worse, again, so he was put on life-support. He wasn’t going anywhere until he was stable. They didn’t want to take the risk of putting him in the ambulance, having to stop en-route and not being able to help him.
We had to wait for the ambulance to arrive to pick him up. It was agonising. Although we kept fully informed every step of the way, we still didn’t really know what was happening. It was a whirlwind.
When he did eventually stabilise on life-support they rushed him to Addenbrooke’s. Everything was happening so fast, it was hard to keep up. So many thoughts were running through our minds, the worst of the worst. We were exhausted, but restless. We had other children at home who would be wondering where Mummy and Daddy were, but we needed to be with Joseph.
Fortunately, the things that we weren’t thinking about, someone else was. Before we left for Cambridge, we were told by a nurse not to worry, there was accommodation at Addenbrooke’s run by a charity called The Sick Children’s Trust. What a relief.
There is something to be said about acts of kindness like this. Thinking about somewhere to stay was not our priority, but it is something that is vital when your child is fighting for his life nearly 70 miles away from home. Also, before we left for Cambridge the nurses at Ipswich made sure we had food for the journey… It’s something that seems so little, but at the end of the day – we needed that food so we had all of our energy for Joseph.
We travelled separately in the car – I didn’t want to be in the way in the ambulance, I wanted the doctors to be able to get on with their job.
Arriving at Addenbrooke’s and seeing Joseph in such a bad way was heart breaking. We were told he had an abscess. The abscess was causing a lot of pressure on his brain and was also blocking the brain fluid route causing hydrocephalus. There was no time to waste – they operated on him immediately to drain out the fluid from the abscess and insert a tube to regulate and monitor his brain fluid externally.
But that wasn’t all. Joseph needed to undergo a second surgery straight away for Mastoiditis – a serious bacterial infection affecting the mastoid bone in his ear. He needed part of the bone removed to make him better.
It was so much for him to take. I couldn’t bear it.
As we waited for him to come out of theatre, we were given the worst case scenarios, which were absolutely dreadful to listen to. We needed him to wake up and show us that he could pull through, but looking at him – lying there helpless – we could see he had a big battle ahead. As a previously big lad, he was grossly underweight after being ill for so long – he just didn’t look well.
But he did wake up, and that day was incredible. The first thing he said to me was ‘see, I told you I was ill’. For such a grim situation, Joseph just lit up the room. Saying that just proved that he was tough and it gave us hope that he would get through this.
Although Joseph wasn’t in intensive care too long, his treatment was very hard, on him and on us. Because of his operations he had so many tubes coming out of his head and it was very important he remained upright and relatively still.
As he gradually started improving, he began to realise the extremity of the situation. After all, he thought – like us – it was only an ear infection. How had it led to him being so far away from home, undergoing two operations and being wired up to machines? He had a lot of questions.
It was during this time that it was important for us to have somewhere to stay. This place was a ‘Home from Home’ on the hospital site called Acorn House, run by The Sick Children’s Trust, and we stayed there for two weeks. Staying at Acorn House meant we could be there for Joseph the entire time and talk him through what had happened, reassuring him that he’d be fine and that we weren’t going to leave his side.
We’d never heard about The Sick Children’s Trust before and we’re so glad for its help. Simple things, like having the facilities to cook a meal and a place to lay your head are things you don’t even think twice about back home. What was also very special about Acorn House was the fact that we had a telephone in our room. A week after we’d been there, Joseph needed yet another operation, so knowing we had that phone just in case they needed to ring was a huge weight off our shoulders. We were almost next door, so could be there in an instant.
Acorn House also meant that our other children, Layla and Charlie, could come and visit. My mum brought us a picnic lunch up once with the kids, Layla played in the garden at Acorn House and we all spent time together – and most importantly, they could see their big brother.
Looking back now, it’s shocking to believe this all stemmed from an ear infection. Not only was Joseph’s time in hospital long, but his recovery process took months and months. He went back to school in June part time because he was so tired and needed to build up gradually. But he made it full time for the final week of term in July – we were so proud.
But now, Joseph is doing well. He’s half way through his GCSEs and doing a great job – he’s very smart! He took the whole event in his stride, so long as he’s watered and fed – he’s fine.
But to think at one stage he couldn’t even hold a book, it’s amazing how he is a year later. He’s now just a teenage boy (with very paranoid parents) who goes to school, sees his friends and enjoys life.
As I said, we’d never heard about The Sick Children’s Trust before this, and it meant so much to us to be there with Joseph. Over Christmas we encouraged family members to donate money and items from the wish lists, we also – along with another family who stayed at Acorn House – had a Big Chocolate Tea party too and raise £220! We just want to say thanks and to do our bit to help families who are in similar situations, as Acorn House made such a difference to our experience.
Carla Turner, Joseph’s Mum