Written by Brad Watts
I stood there looking at my two-year-old daughter Matilda dying in a hospital bed. I had begun unravelling watching the scene play out, I had lost control of my emotions as for the first time in my life, real gut wrenching fear began to take over. I was yelling at the doctors and nurses who hadn’t yet picked up that my daughter was unconscious with Raised Intracranial Pressure. She was displaying ‘cushing reflex’, this meant her blood pressure was increasing, pulse dropping and her breathing becoming irregular. We were going to lose her unless someone did something to save her.
This moment was crippling. Because I was a paramedic and medic in the Army, I was used to seeing scenes like this. Yet in this moment when it was my little girl laying there I was unable to do anything, hamstrung by the hospital confines and my now weakening rational thought processes. All I could do was vent my frustration at the medical staff who, in my mind, at this stage were useless. They didn’t seem to have a plan and were flapping about… I wanted to take over and started barking orders at the staff. I wasn’t helping. I had to leave the room and so, in a daze of anger and frustration, I walked into some sort of storeroom and threw a commode chair against a wall. All I wanted was to fix what was happening in my daughter’s room but I was stuck here losing control of my emotions.
A hospital orderly came running into the storeroom, took one look at me and turned around immediately and bolted. I don’t know how I looked at that poor orderly but it had obviously been enough for him to turn and run. In that second, after that reaction, I stopped. What was I doing?
My daughter was laying there and I was now in another room not helping her. Losing control like this served no purpose. What my daughter needed now was people helping her, rather than people getting emotional about her critical situation.
I walked back into my daughter’s room and talked with the resuscitation team to get an update on Matilda’s progress. They had stabilised her airway and for the moment her vital signs were holding steady for the moment.
Matilda needed a CT scan immediately to figure out what was going on inside her tiny little skull. Something was causing the pressure rise and we had to figure out what. My ex-wife and I went with her to radiology and sat in a small waiting room as the medical team performed the scan next door. The anxious moments of waiting the results to come through seemed like a lifetime knowing our little girl lay vulnerable and alone in an x-ray room next door.
A doctor came to speak with us, they had found a large tumour on Matilda’s brain stem and she would need immediate key hole surgery to release the pressure before they could perform an operation to remove the tumour. In the tension of the moment, I looked at the doctor and said, ‘Why are we still talking?’, it seemed like an obvious and necessary thing to do and we were wasting time chatting about it. Every second her brain was in a swollen state she was at risk of losing her life.
Over the next 18 hours Matilda underwent burr hole surgery to release the pressure followed by an intense operation where a paediatric neurosurgeon cut a window out of the back of her skull and used robotic surgery to remove the tumour. This remarkable man was shaving within micro millimetres of Matilda’s brain stem, carefully balancing the need to remove the tumour with the risk of cutting into the brain stem – an incredibly hard job that he just got on with.
Over the next two weeks we sat with Matilda, firstly in intensive care willing her to wake up, and then in the high dependency unit and ward as our little girl started to come back. Firstly, we started softly with waking her up and getting her talking again. Every word she whispered was a little win in a big race for life. With time, and increasing strength she was able to sit up, then stand, and then walk. All of this took time and patience.
Often the physiotherapists would come in and do an hour of rehabilitation with her and then say she should rest, but by the afternoon she would be ready again. Her enthusiasm to just get on with it inspired me. So, I would get her up and push her further by going through the physio sessions again just the two of us; walking and training until she was exhausted. I knew in my mind that every second of pain we worked through together was helping her grow more determined. Her resilience in those moments was constant. She often hurt and would be upset, but she would always try to do better. I couldn’t be prouder of her in those moments.
Once we got Matilda home, we started the long-term therapies; hydrotherapy, physiotherapy, speech therapy, and all the others. Our mission was to build Matilda back to be the best version of herself we could ever imagine.
Eventually, we sat with an oncologist who outlined the treatment options while we waited for Matilda’s condition to stabilise. We could go through chemotherapy, or focal radiotherapy. We researched all the papers we could find to decide the best treatment options for her type of brain tumour and the impact it has on children. We couldn’t find any firm evidence that, for her type of tumour, chemotherapy would make a difference. However, there was significant evidence that chemotherapy delivered to a little girl under three years old could cause significant adverse effects later in life. We made a call, we weren’t going to go with the chemotherapy. We would try the focal radiotherapy, whereby radiation is beamed directly to the tumour.
For the next seven weeks, five days a week, Matilda was strapped into a machine with her face bolted down to a bed by a custom fit ‘hockey mask’ which would hold her head still to enable the radiation to target the tumour. Any movement risked damaging brain tissue that did not require radiation.
This process for someone Matilda’s age normally involved a general anaesthetic as most kids could not lay there in such a frightening position with a large machine whirring around them. Matilda though, within weeks, slowly taught herself to suppress her fear and emotions and was able to lay still for the last five weeks without sedation. This turned a whole day process into a couple of hours – all through her resilience and determination to just get on with it.
After seven weeks, Matilda’s interventions and initial treatment were complete and so we spent the next three or four years watching her recovery. Watching nervously for any signs that the tumour had returned, watching to see how well she recovered from her injuries and watching to see what deficit she would be left with after her small body took on such trauma at an early age.
As she grew and developed into a little girl my ex-wife and I made a pact. We would not treat her any different from any other child. She would live a normal life and not be molly coddled due to having a setback at a young stage in her life. Whilst we ensured she received her treatment and worked with her through her difficulties, we also ensured she was in a normal class with other kids at school – doing what other kids do, enjoying life as a child.
Over the seven years since, Matilda has exceeded our expectations. She has recovered and each scan and each review has passed without further incident since that day of the diagnosis.
We have made it for now.
There was once a moment, when her life was so fragile, where all we wanted to do was keep Matilda for just a few moments more. Just one more minute. One more hour, one more week, and so now, to watch her grow into being the amazing 10—year-old girl she has become means we have truly won the lottery of life. And so, we spend our time enjoying every second of her courageous life by enjoying every milestone she reaches.
Matilda’s resiliency has taught me that sometimes we get dealt some rough hands. That’s life. You can choose to dwell on the negatives or you can come out triumphant and use those difficult moments to build you and shape your future to be a better you.
Life is a gift that we are lucky to enjoy and Matilda’s illness made me realise that life could be over at any moment, for anyone. Therefore, if the wind fails to serve you, take to the oars and make every moment count.
Brad is a former Australian Army medic with the Special Air Service Regiment (SASR). He is a father, mountaineer and a trek guide.