Some time ago I heard about the death of one of my teenage patients.
He lived several hours from Sydney had been out of hospital for over a year when news filtered in through the hospital grapevine that there had been an ‘event’ at a local swimming pool and he had ended up dying. I was mystified as to what may have happened. Could it have been an assault?
An accident, perhaps? Maybe an epileptic seizure at the wrong time resulted in a tragic drowning. I never did find out. All I remember is that he had died. I felt confused and sad, but moreover, I felt guilt.
This young man was pretty amazing. I first ‘met’ him and his family when he was helicoptered to hospital on life support after a severe trauma. He had a severe head injury and was close to neurological death. He required emergency surgery and then several more cranial procedures.
He was on life support in Intensive Care for many weeks and when discharged to the ward, he remained in a minimally conscious state for months. For many weeks, I felt that his ultimate outcome would be one of the worst possible… not dead but in a coma of sorts… I remember looking after him over the ‘quiet’ period of Christmas and New Year holidays where I would see him daily or more and worry about his progress. Mostly I would worry that there was some critical mistake I was making that was hindering his progress. Fortunately this was not the case.
Whilst many sufferers of severe traumatic brain injury ultimately do poorly in the long term, children have a marvellous capacity for recovery. Over months, he started to wake. Then he started to move. Then he started to talk. The gains he made after so many months became staggering. He ended up walking out of hospital and to a stranger on the street would have behaved and interacted like any other young teenager. To his family, he was changed, yes, but to others he was ‘normal’. I attribute his remarkable recover to the fortitude and skill of the rehabilitation services I am proud to work with, the love of his family and the mysterious healing powers of the human body.
The news of his death over a year after this happy outcome shook me. The feeling of guilt perplexed me.
Illness or potential (or actual) death of a child is one over the worst traumas for a parent to face. What many parents don’t grasp is that you child’s doctor and healthcare team carry that same worry and responsibility. They want nothing more than to give your child back to you. Unbroken. Well. A full life ahead. Fortunately this happens every day. Sometimes, tragically it does not happen. When we do see a good outcome in our patients we rightly celebrate in it, even if it is not visible and be assured when there is a poor outcome we are our own harshest and most ruthless critics.
And that is why I felt guilty. He deserved a long life after such a battle.
To all my young patients, I want you all to have a long life.