Joshua was diagnosed with severe brain-damage when he was just four days old and so we have always known his diagnosis. What we did not know, neither did the Doctors, was how his ‘devastating brain damage’ would impact upon him. This news was delivered to me on my own, as the Doctor was about to deal with an emergency, so she had no time to wait for my husband to be there too, even though he was already en route. Now I reflect on that, whether we heard that catastrophic news on day 4 or 5 of his life did not really matter, what mattered was how the news was delivered and that we were given the right support to receive the blow. As it was, I did not really take the diagnosis in properly, I was in shock. A lovely young nurse called Katie – I will never forget her and will always be grateful for her care of both myself and baby Joshua – called my husband and told him to come into Special Care as soon as he could, as I needed him.
When he arrived, with my parents, I could not really tell him what I had been told as it was all blurred, and again , Katie stepped in and arranged for another Doctor to read his notes and deliver the diagnosis again. This time we were together and this time we had time to ask questions, although we did not like the answers we were given. The second Doctor had all the time in the world for us and confirmed that a large proportion of Joshua’s brain – 70% on left hand side and 30% on right hand side – was damaged. My husband was more practical and rational and he asked what exactly damaged meant and could it improve? The blunt answer came back ‘no, its dead’. We asked what the impact of such brain damage, caused by a stroke, might be and were told that it was uncertain but that he might not walk, talk, see or hear. He advised that we take Joshua home and treat him like a ‘normal baby’ when the time was right, in another week’s time.
Now I can remember that day as if it was yesterday and I will never forget the room we were in or the feelings that flooded my brain. We both stayed up all night, talking, crying and gazing at our very poorly baby in his incubator. I have two things to suggest about how that experience could have been improved for us at that time, even though nothing would take away the pain of the diagnosis:
- On the fifth day of Joshua’s life – or at least in the first 11 days before we left Special Care- a social worker should have appeared and introduced themselves to us. They could have told us a little about the world of disability that we were about to enter. They could have left us with some reading material about benefits and where to access support, that we could have read when we were ready. That would have helped us to feel less alone and that this was a journey that other families had been on and had survived. I am not saying that we would have taken any of it in at that time, but then at least we would know where to turn when we were ready. Instead I had to self-refer for a social worker many years later, when Joshua was 8 or 9 years old!
- I would have found it helpful to have met someone like myself now. There, of course, are no guarantees but if as new, frightened parents we could have been visited by someone like me now, with a 17 year old son with the same diagnosis , it might have given us hope. The doctors do not deal in hope, they have to deal in facts, and probably the bleakest outcome too, so that they cannot be accused of giving false hope. But if I had met smiling, cheeky Joshua – yes wearing splints, attending a special school and wearing an epilepsy helmet – then I might have been able to visualise our future better. I could have seen that Joshua had not been given a death sentence but that quality of life could be achieved – not the life that we had planned for him, but Joshua does everything in his own unique way.
In a way, this is what I hope to achieve through this blog. I cannot visit new parents struggling in hospital, but I would like to think that reading about the fun that Joshua has, in amongst the struggles that he faces on a regular basis as it is a warts and all account, might give someone some hope, someone who needs it right now. As a new mum of a 4 day old brain-damaged baby, I could not begin to imagine that Joshua could laugh, show affection, would have a wicked sense of humour, would have a love of music and would make his presence and wants felt as well as he does. To read about Joshua’s antics now, might just have been the tonic that I needed back in March 2001.