It was late afternoon on Monday 3 March and Thomas was just five days old. Thomas was now in the Paediatric Intensive Care Unit (PICU) in Southampton. We had arrived very early the previous day from Stoke Mandeville Neonatal Unit, in order for Thomas to receive the care that he needed. He had continued to receive high levels of antibiotics and they had finally managed to stabilise his condition. Whilst he had been too poorly to receive a lumbar puncture, it was suspected he had meningitis and was being treated accordingly. As a result, he had been taken to have an MRI scan in the afternoon and the nurse told me that the results were back in.
Not knowing how long the results would take or whether there would be another opportunity, Jason had driven to Bucks, one of his fairly regular trips back home. These trips were two fold, firstly, to see our two other children, both were not yet at school and had spent their daily lives with me at home. They had been packed off to their Grandparents so quickly and unexpectedly when we were first admitted, and at the time, with no definite end date as to when they may be able to go back home, or be with their parents. Of course, they were surrounded by love from their extended family, but it was an unusual situation for them to deal with. And there was the welfare of the parents, Jane Lindner, and brother, Nicholas P Lindner, who had stepped up into the role of carers that also needed checking, to ensure that our two monkeys hadn't broken them! The other reason was the practical aspect of Jason's trip, to take back laundry and to return with more clean clothes, to last us for the next couple of days, before he was to return again. This was one of the few down-sides to being admitted so far away from home.
Knowing that Jason had planned to "pop" home, my dear friend, Emma Harper, came to the hospital to meet Thomas and to keep me company. I am eternally grateful to her that she dropped everything and came, it was wonderful to see her and a privilege that she witnessed a bit of the bubble we had been living in. The timing of her visit, found her deep in our journey though and being part of another of those life-changing moments.
When I had mentioned to the nurse that a friend was coming to visit, she was pleased that I would have company. The neurologist wanted to come and talk to me about the results of the scan and they had concerns about doing that if I was alone. Emma and I were sat next to Thomas on the ward. It was dark outside and the lights on the ward were bright. The constant beeping of all the machines on the ward had become background noise, with warning alarms sounding at fairly regular intervals. Most of the curtains around each bed were open and lying on some of the beds were very sick children and teenagers, many were recovering or waiting for critical operations.
When the neurologist arrived, she pulled the curtains around us to give us some privacy and perched herself on one of the tall stools used by the nurses. I knew that the chances of receiving some life-changing news were high, after their concern over me being alone and also ensuring that I had privacy. What I had no idea about was what form this news would take. Thankfully, I had had no experience of meningitis and nor did I have any clue as to what the impact of it could be, other than death. Surely, they would have wanted Jason to be present if it was to be the worst news, but I couldn't be sure. I think it was my own ignorance that had stopped me from feeling too anxious or worried, as well as the fact that I was not the type of person to worry about things until they happened. All I wanted to know was that Thomas was not going to die and that he would be making it out of the hospital alive.
I felt a bit of relief initially when the neurologist broke the news that the scan results had showed that Thomas had suffered some brain injury and would likely have long-term, fairly severe consequences. I was relieved that I would not have to somehow break the news to Jason that his son was going to die, and I felt lifted at the prospect of taking Thomas back home as part of our family.
She continued to explain that with brain injuries, the resulting disabilities are very difficult to predict due to the ability of the brain to rewire to use different parts for different functions. This "plasticity" often ensures some of the more critical brain functions develop to be performed by a different area of the brain if the standard area had been damaged. This would make it very difficult to provide a detailed prognosis for Thomas in terms of the impact this brain damage would have on him for the rest of his life, and especially as the brain damage had occurred whilst Thomas was so young, when many key functional connections were still to develop. What she did say was that it was likely that, due to the size of the injury, he would have at least moderate to severe impairment of brain function and he would have cerebral palsy, which would be in the form of spasticity.
Before she left, she acknowledged that I may have further questions once I had a chance to start to process this information and that she knew that Jason may wish to discuss this further and hear this information directly from her, in case I hadn't remembered it all. She would be back tomorrow and she would ensure that she followed up with us.
Wow, I hadn't been expecting that, although I wasn't quite sure what I had been expecting. Neither of us had ever had much experience with these types of disabilities nor did we have any understanding as to what this meant for Thomas and his future, what this meant for us, as Thomas' parents, or the impact this would have on Thomas' siblings. I just had an image of us that kept popping up in my mind over the coming days, of us, as a family of five, out somewhere in public, Lucy and Oliver running around, Thomas confined to his wheelchair and us as his parents feeling exhausted but blessed to have our family together. The members of the public would pass us, and give Thomas a glance, perhaps even give us a little nod of acknowledgment but be silently judging our family, our circumstances and our son.
And had she really just told me that my son would be a spastic? The last time I had heard that word used, was when it had been flying around the playground at school in the 1980s. It had been a commonly used derogatory term at primary school by 8 year olds and now, a highly qualified neurologist had thrown it at me about my son, albeit with the true sense of the word. Surely, I must have misheard, but as the penny finally dropped, it started to dawn on me that alongside the very difficult medical times ahead of us, he would also have to potential face a whole new world of bias and discrimination.
My concern also grew over the level of suffering Thomas would have to endure through his life. He had already been through so much, so much more than we would ever be able to understand, as he had very little capability of expressing himself, but now we would never be free from some level of medical need or intervention. How would he be able to manage this and how would we be able to support him when we were so much in the dark? My heart ached for him but was ready to stand strong by his side through whatever lay ahead.
Later that evening, I sat next to Thomas. Jason was on his way back to the hospital and Emma had gone back home. Staring at my perfect and beautiful baby lying next to me, it was so hard to comprehend. He still looked well and healthy (apart from the tubes and wires that surrounded him) and yet we knew that all was not well inside his little head.
A few people had started to gather around one of the other beds on the ward. Laying in the bed was a young man, a teenager. I have no idea why he had come to be on the ward or anything about his life before he arrived, but doctors and family members stood around him. I could hear a murmur of voices over the beeps of the machines. I looked back at Thomas and tried to start to process the information I had just heard. Then all of a sudden came a blood-curdling scream. It was the scream of his mother, stood at her son's bedside who had just received the worst news. It shook me to my core. It was so natural a reaction, one that all mothers hope they will never have to face, but it expressed so clearly the devastation that the news she had heard would have on her and her life. It had only been a short-while ago when I was half expecting to be in that mother's shoes. Now I wasn't and for that I was truly grateful, but it kept me firmly grounded as to where I was and why we were there.
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