To know or not to know, that is the question?

Joshua was whisked away to an incubator as soon as he was born as he began fitting immediately. I was so relieved that the labour was over and that our son had finally arrived – he was 2 weeks overdue – that I was in denial over what that really meant, perhaps it was nature’s way of protecting me. I can recall sitting up in bed on the ward saying to my husband, when looking across at mothers who were suffering after their Caesarian sections ‘ I am so glad that I didn’t need a Cesarian, they must be in agony now’ and him pointing out what must have seemed obvious to him ‘ yes but they have their babies with them now and we don’t!’ That came as a shock to me then. Joshua was in special care for 4 days, with the best care imaginable, primarily from a wonderful nurse called Katie, who we can never thank enough. He needed oxygen and even then he would stop breathing, and need to be ‘jiggled’ gently to remind him to keep going, but even then I never once expected to lose him. But he underwent a scan on day 4 and that was the day that changed our lives forever: The doctor came to my bedside in the evening and she asked when my husband would be coming back in. I explained that he was due in the evening with my parents to visit. this did not suit her schedule, as she had other patients to fit in, so she proceeded to give me his diagnosis on my own, with the nurse Katie at my side : the scan had shown devastating brain damage due to a stroke – 70% damage on his left hand side and 30% on his right hand side. She calmly delivered the verdict that he would probably never walk, talk, hear or see. I was numb and could not really take in what she was saying. I called my husband and asked him to come in as soon as he could but I could not get the words out to tell him why and Katie took over , simply saying ‘Your wife needs you!’. Never was a truer word said. He arrived at the hospital in record speed, my parents later told me how frightening the drive through country lanes had been, and we sought out the doctor for a re-run. She was busy attending to another patient so, thankfully, we met with Dr Wood, who became his pediatric consultant for several years and he gave us time to ask questions when he repeated the news and even shared scans with us. My husband needed clarification of the expression ‘brain damage’: does that mean that it is damaged but could repair? ‘No’ came back the blunt reply ‘ the brain tissue is dead’ We  both stayed in the hospital overnight that night, to digest the diagnosis, but I did not need my bed in the  parents’ room as I spent all night sitting next to Joshua’s incubator and talking to him. The next day Dr Wood had kindly prepared some research about the percentage chances of each devastating outcome and it became clear that they were not all guaranteed. After 11 days in Special Care, we were told to take our baby home and to ‘treat him like a normal baby’ while we waited to see what developed, and that is what we determined to do and we are still doing it now, trying to treat him like a normal 14-year-old. So we have always known the ‘what’ is the problem but have never understood the ‘why it happened?’, that appears to have been dismissed as just one of those unfortunate things. So we have never had the uncertainty that many of my friends have endured, they have had years without a diagnosis and have had to attend specialist after specialist appointment to try to get to the bottom of why their child is like he or she is. That must be agonising  and so frustrating too. But, we have never enjoyed Joshua’s carefree babyhood before his epilepsy kicked in aged 4, as his diagnosis was always hanging over him like a bad smell. Of course we relished his first steps and his deep baby voice booming out ‘hiya’ at strangers in shops, but they were always tainted with an anticipation of bad news too. I can remember saying to the health visitor that Joshua did not enjoy swings or climbing in parks like his peers did and asking might that be down to his diagnosis? she quietly asked, looking at my bulky frame  ‘Do you like adventurous, outdoor pursuits?’ and when I of course said no, she said that his choices may not be based on his brain damage but on his genes and inherited personality, so I have tried to remember that. Joshua’s attitude towards sleep is either feast or famine: last week we ranged between zero and two and a half hours sleep at night, then last weekend he clocked up 15 hours on Friday night and 13 hours on Saturday night! these long sleeps might not actually be related to his seizure activity or his medication, but might simply be because he is now a teenaged boy! we have never had the luxury of thinking that everything is going to be alright with our son, but on balance, I think that perhaps that is better than the uncertainty surrounding many children, but lets face it, in an ideal world we would have chosen a very different outcome for our son.

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