Most parents will do anything for their children. For Christopher Tobey, however, that sentiment was put to the test when he learnt that his teenage son Charlie faced death if he didn’t receive a liver transplant.
As there was a desperate shortage of donors, Chris was told that Charlie’s only chance was for him to become a living donor, giving a section of his liver via high-risk surgery that had no guarantee of success. Here, Chris (53) and Charlie (15) from Woolhope, Herefordshire, who feature in Channel 4’s new documentary series Inside Birmingham Children’s Hospital, tell their story.
THE DAD’S STORY
Sometimes, a few words can change everything. In my case they were: “We could just take some of yours and give it to him,” uttered by the doctor who was looking after my desperately ill 14-year-old son Charlie. He needed a liver transplant, but with a shortage of donors his chances were looking grim.
I knew instantly that I would do it, despite the fact that I’ve always harboured a deep fear of going under the knife. To be honest, I’d do anything for him.
Charlie had liver problems at birth. His mother – my wife, Rachel – had contracted autoimmune hepatitis when she was pregnant, which had passed on to Charlie in the womb. Days after his birth we were told that without a transplant our beautiful newborn son had just a week to live.
Looking back, I don’t really know how we dealt with it. All you can do is try to focus on the positive, because the alternative is just too horrible to contemplate.
We were lucky: Charlie received a new liver when he was two weeks old, and doctors told us that if he took his anti-rejection drugs he should recover well. And he did. As the years went by, Charlie grew into a clever, bright and sporty boy with a love of rugby and cricket. Of course, you never fully relax when your child has been severely ill, but Rachel and I also knew that we couldn’t wrap him in cotton wool, and it got easier as he got older.
Then, a few years ago, Charlie was given the swine flu vaccine. To this day, we don’t know why he reacted so badly to it, but again his health started to deteriorate and he started to reject his liver. Endless investigations ensued while – over months, then years – Charlie got weaker.
It was very hard. Suddenly, we were facing the same nightmare all over again, the difference being that this time Charlie was no longer a baby but fully aware of what was going on. As a family we have always dealt with things by using humour, and Charlie was incredibly brave, but there was no getting away from the fact that his prospects were looking increasingly grim.
By October 2014 we had been told that Charlie had to go back on the transplant list. At the same time it was clear that there was a huge shortage of donors – and that’s when the doctors said I could do it.
The details didn’t make for easy listening: while the operation was unlikely to affect me in the long term, it came with a list of risks, from blood clots and paralysis to death, with a significant chance of something going wrong – although I’m not sure that any odds, no matter how low, would have changed my mind.
What kept me awake at night was worrying about Charlie. Would it work? Would he be OK? What would happen if it didn’t work? By day, Rachel and I did our best to put a brave face on things, but there were moments when Charlie had gone to bed when we would both break down.
The night before the operation we went out as a family, with some close friends. We tried to have as much fun as possible. It wasn’t easy, knowing that at the end of the evening we would go our separate ways to different hospitals and that the next time we saw each other – God willing – we would both have been through major surgery.
On the morning itself I woke with a tumult of emotions – trepidation and fear, but also excitement that this might help give my son his life back.
I recovered well, but it was a week before I could leave hospital and see Charlie. His surgery had not been without complications and he was still in intensive care when I saw him. I’m not too proud to admit that I cried when I saw my brave boy covered in tubes.
It’s been a rocky road since, but today Charlie has made amazing progress. I’m so proud of him – and however the operation turned out, I would do it again a hundred times over.
I’d known since I was very small that I’d had problems when I was a baby, but Mum and Dad did their best to make sure it didn’t overshadow anything. We’ve always joked around and taken the mickey out of each other.
Then, after I had my flu jab in 2009 I started to feel really poorly. No one seemed to know what was wrong, and over the next few years my life revolved around endless hospital appointments, blood tests and biopsies.
I tried not to worry about it and to focus on living a normal life. It helped that my friends understood that I didn’t like to talk about what was going on as it upsets me. I’ve never liked people feeling sorry for me.
But by 2014 it had got really bad. I was very small for my age, and tired all the time. I was only managing three or four mornings a week at school and didn’t really have any focus or concentration in class. I couldn’t play sport any more, which was hard because I didn’t want to be the one sitting on the sidelines.
Of course, there were moments when I thought, “Why me?” But there’s no answer to that. I tried not to feel sorry for myself, although a week after I had been told I needed another transplant I remember bursting into tears at school when the teacher asked me about my homework.
By then I was just fed up with being ill the whole time. Something had to change. But when Dad told me he was going to give me some of his liver I wasn’t keen at first. I was more scared for him than I was for myself. I didn’t want anything bad to happen to him, and I worried that if something went wrong it would all be my fault. I told him I would prefer to get it from someone I didn’t know, which was hard for him as he wanted to do the right thing. But by the time the transplant came round I was feeling so ill that I just really wanted it to happen.
The night before surgery, we tried not to make a big deal of it. We all had dinner together as a family. At the end I said, “See you soon,’’ to Dad, who went one way, and I went the other way with Mum. I remember lying in my hospital bed after surgery, waiting to hear if his operation had gone well and feeling the most enormous relief when Mum told me it had.
My surgery was complicated: I had septic shock, all my organs failed and I felt very ill. For the first week I didn’t really know what was going on, but I remember Dad coming to see me and breaking down in tears. It sticks in my mind, as I had never seen him cry before.
It hasn’t been the easiest ride since, but a year after my surgery I am fine now and I can look forward to normal life. I’ve got Dad to thank for that, and I am so amazingly grateful for what he did. We were close before, but we are even closer now.