I am lucky enough to only live 2 miles away from my workplace, so most days I come home for my lunch hour. I took the dogs a 20 minute walk before I came home and then I made myself some beans on toast for lunch. I flicked on the TV, for noise mostly , while I ate and I got drawn into a daytime soap opera story line : a couple had a baby 2 months prematurely and he was whisked off to Special Care immediately. While they were still in the delivery suite, they were in shock as they were not expecting him so early, and they called him Joshua as they decided it was a strong name and he would have some battles to fight. I was then hooked and I watched with horror, and familiarity, as they visited their son in an incubator, all connected to wires and monitors. Then the Doctor came after scans, and told them that he had suffered a massive bleed on the brain and that he would be brain damaged and so compromised, that they recommended turning off the life support and letting him go, to be continued….
This felt like a familiar tale – other than the fact that our Joshua was overdue not premature and he had a stroke, rather than a hemorrhage – but I was gripped. We too had the SCBU experience and those all important, revealing scans which delivered some devastating news when our Joshua was 4 days old. But unlike on the soap opera, thankfully, nobody ever suggested turning off his life support and that he should be allowed to be released from a life with no quality to it. It made me feel sick to even contemplate being given that choice and responsibility for life and death. Instead they delivered our news with no guarantees : he has suffered devastating brain damage and so he may not see, hear, walk or talk. We were told to take our baby home, after 11 days in Special Care, and to treat him like a ‘normal baby’ and see what develops. Of course we had no choice but to love him, care for him and see what he was able to achieve as he grew.
I often think that I would love to take Joshua back to hospital and back to Special Care, to show the Doctors just how much he has achieved in 18 years, as they will never know. they send tiny babies home with frightened parents, with a diagnosis hanging over their heads, but will never get to hear how that all worked out. I would also like to meet parents like us, who have just been delivered a blow, and to show them that it does not need to be doom and gloom and to give them some hope. If I had met 18 year old Joshua when we had been given his diagnosis, and seen what he has achieved and how much love and mischief he is capable of, it would have saved years and years of heartache and worry as he was growing up. I would like to offer that same glimmer of hope to other distressed parents in that daunting position, as at that painful time, you need all the reassurance that you can get.