As told by Jem's Father, Matt Darling
I never imagined I would work in healthcare. Like most people, my impression of hospitals was that they were calm and organised and had a characteristic smell of antiseptic. Then I was sucked into the vortex of hospital operations as I cared for my daughter as she suffered with brain cancer. I saw distraction, error, chaos. I saw well-meaning people unable to function as they wished. I saw and felt pain and suffering and after my daughter passed, I had to do something about it. The terrifying numbers of preventable deaths are concerning in the abstract, but when you see the suffering of innocents it becomes visceral, painful, and in my case an obsession.
I remember clearly the day that Jem showed her first symptom, she was 15 months old. I arrived home from work and there she was at the front door, waiting for me, as always. Her arms raised, saying ‘Dad, dad, dad’, waiting to be picked up and carried through the house as I found and greeted the rest of the family. It was a routine I cherished, that I began to look forward to on my commute home from work, only today something was wrong. Her broad and infectious smile did not have it’s usual symmetry and nether did her eyes; instantly I was worried. I picked her up and she snuggled to my hip and hugged me as I carried her to the kitchen. “How has Jem been today” I asked. “Ok, but she was nauseous at lunch time” her mother replied. “She hasn’t really kept anything down since breakfast”. It being dinner time I was concerned and took Jem to my study, where I looked up her symptoms on the internet. The loss of symmetry of facial expression pointed to only two causes: Bells Palsy which describes damage to the nerves supplying the face or a brain tumour affecting the cranial nerve supplying the nerves of the face, tongue and oesophagus. I gave her a snack and though hungry, she appeared to gag. I had an ominous feeling. The nausea was a worry. I got her a milkshake and a straw and tried her on that. To my immense relief she drank it down and her symptoms literally disappeared. We decided to put her to bed and take her to the hospital the following morning.
When we awoke, Jem’s symptoms had returned. We dropped her sister to school and headed straight to the hospital. The emergency department was a mad house. Tired, harassed-looking people in pale blue uniforms arrived at irregular intervals, asking the same questions as the last over and over. No-one seemed to know what to do, so we waited….and waited. After 7 hours or so a listless, sleepy paediatric registrar appeared. “Bells’ Palsy he said in a flat tone. “Take her home and if her symptoms don’t improve bring her back in six weeks”. I explained that, given her problem with swallowing, I was concerned the problem was a deeper one and asked for an MRI. He informed me that he would have to discuss my concerns with his colleagues and left. A nurse came in and applied some topical analgesics to her writs and feet.
Five hours later the registrar appeared again, looking even more tired than before and informed us that some blood tests were to be performed. A colleague accompanied him, with whom he conferred. “You have to learn to do it some time” she said cheerfully. The registrar looked apprehensively at my daughter and approached with syringe in hand. A nurse was called in and she pinned Jem down, pulled off one of the analgesic plasters off and the registrar began the first of his attempts to draw blood from my baby girl. She screamed as he jabbed her wrist and broke free from the nurse’s grip. The inexperience red registrar, sleepy as he was reacted altogether too slowly and the needle sheered through her delicate flesh leaving a livid red semi-circle. Jem was always one of those children who was brave and stoic, who recovered quickly and made a minimum of fuss. I picked her up, and she soon calmed down, despite the obvious pain and shock to which she had been subjected. The registrar asked his colleague to take over the task, but she demurred. This time an analgesic plaster was removed from her foot. “She is very strong” the nurse said “perhaps you could hold her”. I looked at Jem reassuringly and clamped down on her ankle as firmly and gently as I could. As the needle penetrated the sole of her foot she tried to break free, screaming in intense pain. “She is a really tough little kid” I told the registrar “this is really hurting her”. The registrar looked at me dubiously and said “Nonsense, see these pads, they make her numb. She can’t feel a thing.” And with that he started to pump the needle around inside her foot, looking for a vein. “Why is she screaming then?” I persisted. “She doesn’t like being held” he opined. I looked at her contorted face and never had I seen a look of such distress. She was screaming with such conviction that her tongue was rippling. But only on one side…..
“Listen” I said forcefully. “Stop doing that. I am telling you, you are hurting her”. He looked at my serious face and withdrew. “Did you notice her tongue?” I asked. “Tongue?” he said numbly. “Yes, tongue. It was rippling but only on one side.” He gave me a look of incomprehension and I explained about the cranial nerve grouping. The consultant was called, and I told him the same thing. “Take her home and come back in 6 weeks if the symptoms persist…” he began. “There is no way we are leaving here without an MRI” I responded, repeating the rationale. He looked at me sternly “The imaging lab is shut for the night, but I will try and book her in for tomorrow.”
I made a mental note of the brand of analgesic pads and we headed home. Once she was settled, I looked it up. The window of efficacy was 60-120 minute after application. “How can they not know such a basic protocol?” I wondered.
The next day was one of the worst of my life. The MRI showed a large mass (bigger than a golf ball) in the middle of her brain. We would have to travel for special treatment, we were told, and so our immersion into the confusion of hospitals really began. Her surgery was scheduled quickly, but the biopsy revealed a dire prognosis. Also, because of the location of the mass the surgeon had noted for an entry that required a cut through the head of the neck muscle. One of the cruelest cuts imaginable of the human body. Normal intra-cranial surgery is not very painful. I noticed her obvious pain, but it took days of arguing before the error was acknowledged.
There were many such incidents over the coming weeks. Far too many to mention, some to0 horrible to tell. Suffice it to say that despite the best efforts of well meaning staff, my daughter endured a great deal of unnecessary suffering. She suffered extreme pain, great fear and even torment in a life that was cut all too short. Why? Because there are deep systemic problems that make errors and omissions inevitable in hospitals. The fragmented information environment, a lack of effective team co-ordination, among many others. So we took her home and cared for her there. She died at 19 moths of age. The last words I spoke to her were ‘I love you Jem’ as she lay in her mother’s arms and gave up her last breath. I decided then that I would design a system to overcome these problems as a legacy to her.
Jem’s life was all too short, yet the most beautiful and valued experiences are often brief, consider:
a buttery glowing sunrise;
a boring red-orange sunset;
a peal of joyous laughter;
a flash of shooting starts;
a single fragile blossom;
a cloud of butterflies; or
an unexpected rainbow.
Such things light up our lives. They stand out like bright and shining jewels in our memories. No pure and beautiful experience is lessened by brevity, it is made more intense and more deeply treasured. We will forever treasure the time we had with her. We have vowed to use what we have learned through her suffering, to make her legacy. I am an inventor and now work in healthcare. The system my company has developed has been shown to triple nurse time spent on patient care, while helping ensure quality care is delivered and keeping the patient safe. That is her legacy.