Sometimes you are faced with a patient that takes your breath away. It can be a different experience for different people. But the defining factor is that you leave having change a bit, and having left a bit of yourself in the room with the patient.
For me it showed me how valuable life is, and how music is my passion.
As is quoted in Tool’s “The Patient”, I was spending time in the paediatric hospital’s intensive care unit, and felt like:
If there were no rewards to reap,
No loving embrace to see me through,
This tedious path I’ve chosen here,
I certainly would’ve walked away by now.
Gonna wait it out.
I was relatively bored as things were quite slow moving. Then came in Ayden (not his real name). I spritely 6 year old boy, blonde with soft flowing hair, and an absolute desire to go outside and play. Let me set the scene.
Ayden was a young boy from the north shore of Sydney, and he came in having been transfered from another hospital complaining of a 1 week history of intense headache and a 2 day history of vomiting (likely related to the headache). Naturally, any medical student would ask a few questions such as if there was a fever or neck stiffness in order to rule out meningitis. The first hospital he went to didn’t do this and went straight for a lumbar puncture, without even performing a fundoscopy to check for intracranial pressure. Admittedly this happened on a Sunday evening, but it’s still no excuse for ineptitude, and is partially the cause of what was to come for Ayden.
Ayden came to our ICU while coning (a term to describe tonsillar herniation of the brain through the foramen magnum). He was still lucid when he came in, but as he was being wheeled away to the CT machine, he hugged his mother, told her he was scared and wanted to go home, and then passed out. I haven’t heard Ayden say anything else since.
The emergency CT scan showed what everyone feared: tonsillar herniation. But it was the other signs that were more concerning. A basilar artery dissection had caused 75% of the cerebellum to stroke, with diffuse ischaemic stroke patterns across the brain cortices. It was the worst brain I had ever seen in my life, a sentiment reflected in the intensivists, anaesthesists, radiologists, nurses, neurologists and neurosurgeons helping Ayden survive. He went into a coma.
The confronting part wasn’t what happened to Ayden, rather it was the response of the parents. His mother was still in control, obviously breaking down at regular intervals, desperate for Ayden to wake up, but his father disintegrated. He was in complete shock, a man that I had heard prior to the CT scan who was full of confidence and power of a strong business minded individual, reduced to a quietly spoken and meagre man. I talked to him many times at more opportune moments. It became clear that everything he had done was for his children, which he was about to lose. For him it was akin to losing everything and having to start over.
The intensivists called the family into a room where they made it clear that Ayden would most likely die in the coming days, and if he didn’t he would be a vegetable. This shook the family, and it was confronting for me to be involved in this meeting. Ayden’s younger sister didn’t understand and just wanted him to wake up so they could play. Even if Ayden did wake up, I realised he would never be able to play.
But in a broader context I thought a bit deeper. Assuming he woke up, Ayden would never be able to run. He used to love soccer, but he would only be able to watch that from now on. He could never play cricket or go surfing in the future. He’d have a hard time walking across the playground, or when he’s even older, have a hard time walking to work. There was one thing I know he would be able to do however. He’d sure as hell be able to play guitar, the one thing I love absolutely in this world. He be able to become a musician regardless of what happened to him here. I had, and still have this urge to give him my first electric guitar, aptly named Brick (it’s a Squire Stratocaster), because I know it would serve him as faithfully as it served me.
Ayden didn’t die. In fact 2 weeks later he opened his eyes. It felt like a miracle, not just for the family, but for the doctors involved. While it is often said that doctors work tirelessly for patients, this was genuinely the case here. I clearly remember two intensivists and an anaesthesist spending 3 hours looking at and drawing up graphs of Ayden’s fluid levels and electrolyte status, out of fear of him going into a condition called syndrome ofinappropriate of antidiuretic hormone (SIADH). It was remarkable their attention to detail, so Ayden could get the best care possible. The wake up wasn’t easy for Ayden, but it was a huge step forward for him.
As for the cause of Ayden’s condition, it was never quite clear. His parents had mentioned that he had bumped the back of his head about one month prior to the incident while on a Christmas vacation. Additionaly, the CT angiogram of the Circle of Willis and associated arteries showed what could potentially be a Moya Moya style vasculopathy but this was not clear and not investigated in depth. But one thing was clear: Ayden was unlucky to be in the position, but lucky to be alive.
This begs the question of what I learnt from the case and why it affected me so much. I could relate to Ayden in the type of child he was. I saw myself in him, and to some degree, I saw myself in his father. The simplicity of life became apparent. How a single event can change the course of your life. But it’s not the end of the world, as so many paths are still open. One of those paths, I know for myself as well as Ayden is music. Something that gives joy not only to the creator by also the listener. And isn’t this what life is meant to be about? Finding joy in what you do, hopefully giving joy to others in the process.
Here is an open letter to Ayden:
You won’t know me but I was lucky to have gotten to know you. You came into the hospital a brilliant young kid, one I could relate to since I was the same type of child, always keen to get outside and learn from experience. And look at the experience you had. Unfortunately it was life changing, but you need to know that it isn’t life ending. Know that your loving family was by your side every step of the way, and I am regretful that I had to move onto the next stages of my career in medicine, leaving you behind. But I did follow you from a distance and felt grateful that you were always recovering beyond anyone’s expectations.
Never give up at anything you want to achieve. The world is still open for you, and your path is clear. There are some things you won’t be able to do, but these shouldn’t bring you down. You can always put that energy into something else that brings you and the people around you joy. This is the best part of life. No one’s life is set in stone, and you can find joy in giving other people pleasure.
You will most likely never see or meet me, but I felt blessed to have met you. It was a pleasure to be able to help you and your family in an albiet minute way, but you inadvertently helped me to find guidance in my own life. So thank you.
I hope you find joy in the rest of what life has to offer.