A number of people have asked where I disappeared to and why I stopped posting.
So that I don’t have to keep typing the reason out I’m putting it here. It might just make some of you think about what a loving God you serve.
My partners nephews girlfriend had a little boy at the end of November last year, she called him Tyler. He seemed a perfectly normal child which was a relief to Laura and Scott because their first child Jade had been born with Down’s Syndrome.
At 12 weeks Tyler went for a check up at the Drs. He was small for his age and wasn’t eating a lot. The Doctor looked him over and sent him straight off to their local hospital. The local hospital checked him over and decided they couldn’t treat him, he would need a specialist and he needed intensive care. They told Laura that something was up with his heart, that he probably had a hole in it and that his heart rate was around 200 beats per minute. They couldn’t treat him there so they were sending him off to a hospital in London.
Tyler was transferred to St Thomas hospital in London, to their baby intensive care unit where more tests where run. Tyler’s heart was found to be massive, well over twice the size that it should have been . There was talk of a heart transplant and Laura was told to expect the worst, he might die.
Laura was alone in London 120 miles from her home and her family and she was utterly devastated,. My girl friends sister, Scott’s mum phoned us and asked us to help. So we rushed off to St Thomas and sat with her all night until she eventually sobbed herself to sleep.
Laura didn’t know anyone in London and obviously needed support and friendly faces. Her family would visit when they could but they couldn’t be with her everyday due to the journey so we decided to spend a lot of our free time with her and Tyler, allowing her to leave the ward and even go home on some days to be with Jade. As a result we got quite attached to Tyler.
Eventually Tyler was discovered to have a very very rare medical condition called Pompeys Syndrome. It effects the metabolism at a cellular level, the cells in the body can’t use the energy properly so muscle activity is weak . Because of this Tyler was poor at sucking and so he was small for his age. A side effect was that his heart became huge and would beat at around 200 beats a minute constantly. We were told that Tyler wouldn’t live very long.
It was decided that he would be better off at the intensive care unit at Great Ormond Streets Children Hospital here in London and so he was moved.
At Great Ormond Street the Doctors offered up new hope. A new drug was just finishing its trials, it hadn’t been passed for human use yet but the Doctors said it looked promising. After Laura signed a 20 page disclaimer from the Drug company Tyler was started on this new drug.
Tyler's condition began to stabilise, he put weight on and started to grow, although he still had to be fed via a tube in his nostril.
Over the coming months we’d visit 3 or 4 times a week, at weekends we’d often stay all day, talking crap with Laura or playing with Tyler but no matter how hard you tried you couldn’t forget you were on an intensive care ward with other sick babies and children. We got to know the other families and other children really well and every time one of them died it would be like a kick in the balls and I’d find myself cursing God more and more.
Tyler was getting bigger but they couldn’t get his heart rate down.
A couple of times while he was at great Ormonds we got Phone calls, either from the hospital or from Laura telling us that Tyler had crashed and that were were to get their right away. Off we’d rush expecting the worst only to get there to find he was fine that they had got his heart beating again. The Doctors where pleased with his progress and there was talk about releasing him and sending him back to a children's ward nearer to Laura's home. Things looked bright. Tyler was goinng to be alright.
Monday 15 th of May at around 9.30 at night we got a phone call from the hospital to tell us Tyler had crashed again and to get there asap. Because Tyler had been doing so well Laura had gone home for the weekend leaving Scott’s Mum and us to look after Tyler.
We’d grown complacent, Tyler had crashed a number of times and he’d always pulled through and always grown stronger. Only this time he didn’t. His little heart couldn’t take any more and despite the Doctors working on him for over 20 minutes he still didn’t respond. By the time we got to the hospital Tyler had died. Sunday night i was playing with him, tickling his feet and making his laugh, monday night I was handed his dead body. I had to make the call to Laura, I had to ring her and tell her her baby was dead.
Laura’s reaction was to throw up. Scott, well he decided to take it out by smashing their home up. Scott’s dad picked them up and brought them to London.
Tyler’s body was released to the family that night and Laura and Scott took him home in the back of the car.
You can imagine how everyone felt, we were all devastated. We had all been offered so much hope and we were all expecting so much, too much.
Tuesday morning my girlfriend went off to her family and left me to it. Because Tyler had died in London his death had to be registered at the nearest council offices to great ormond street. So that was left to me. I also had to go collect his certificate of cremation from the hospital without which no funeral could take place.
On the way over to the hospital I got a call telling me that the Drs at the hospital weren’t going to release it. They wanted Tyler’s body back to do an autopsy. Because of the rare nature of Tyler’s complaint and because of the experimental nature of Tyler’s treatment they wanted to take a look inside to find out why his heart had given up. The family were furious, Funeral arrangements had already been made and the Doctors were asking for Tyler’s body to be returned after they had given him back to Laura and Scott, after they had driven home with him in the back of a car, just so they could cut him up to satisfy their medical curiosity.
Off I went to the hospital intent on stopping this.
To cut a long story short..
As A dub I was very good at the Righteous indignation thing, I was also good at standing up to people and arguing my case. I made a powerful speech to the Doctor about humanity being sacrificed to scientific curiosity and pulled him to pieces when he uttered that immortal (immoral) line “I’m only doing my job”. I got the family liaison officer on my side, she then got the hospital pathologist on my side who then stalled ringing the coroner back in Laura’s home town. Because the pathologist didn’t ring the coroner back the coroner sided with the family and refused to allow the doctors their autopsy. We won but it was an awful and very stressful day for everyone. No one would have believed we could have stopped it but we did and Tyler was spared that last final indignity.
The Funeral had to be delayed because of that hold up and so Tyler wasn’t cremated until the following Tuesday. It was a C of E service and despite being out of the dubs for something like 17 years I still couldn’t bring myself to take part in it. I sat at the back all by myself and turned myself off like a good little dub while everyone else fell apart.
It’s been a really Shitty couple of weeks and I know the repercussions to it all are far from over but things are getting better.
It’s funny how much you can miss someone you’d only known a couple of months.
If we as human beings are made in God’s image, if HE feels just a fraction of our pain and suffering, if HE has just a fraction of the love we can feel then why does he allow this kind of thing to happen?
The dubs will tell us God allows it to settle an argument and that it’s alright because Tyler will come back one day. To that all I can say is “What a crock of Shit” I know I would give anything to have Tyler back because I loved him, yet Jehovah God who is suppose to be so much more loving than me and who has the power to bring him back sits on his great fat spiritual arse and does nothing.
Jehovah God, Fuck You.
