How a week in intensive care with my daughter changed me

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Lisa Bryant discusses in the Daily Life how a harrowing experience made a few things crystal clear. That we are all in this together.

$230,000. It’s hard to get accurate figures, but let’s run with $230,000. That is how much Australia has invested in keeping my daughter alive for the past 10 days in the intensive care unit of Sydney’s Royal Prince Alfred Hospital.

The teams of neurologists, intensivists, immunologists and neurosurgeons diagnosing her are telling us they have never seen a case like hers. It’s encephalitis (swelling of the brain, for the uninitiated), but they don’t know what caused it, a virus or an auto immune disease – and, more to the point, they don’t know how to treat it.

So until they know, they are keeping her alive. Alive, at great cost to taxpayers.

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There is nothing like seeing your bright, vibrant 23-year-old daughter going from being perfectly healthy to what they euphemistically call “very unwell” in ICU, within a 12 hour period, to give you some very clear ideas about the sort of country you want your country to be.

I want my country to be prepared to spend $230,000 on not just keeping my daughter alive, but also on keeping your daughter or son or mother or father or partner alive if they are ever in a similar situation. I want the best medical treatment possible. Up the Medicare levy? I would gladly pay double.

I want the doctors and nurses treating her to have had the best tertiary education possible. And bugger them having a HECS debt when they get out. They are there for us in the most crucial moments and hours. The least we can do is agree that providing these professionals with the best possible education is something we can all chip in for.

The nurses are the people who suction my daughter’s respiratory tube and who put the big sign on her skull saying “no bone, do not touch” after the neurosurgeons removed part of her skull to allow her brain room to swell without horrendous damage. I am worried about these nurses. They do their job so well and yet many of them can’t afford to live near their work anymore. Their wages do not match property prices in the inner west of Sydney. Even rental prices are too high. Nurses are happy to commute but they can’t always rely on our inadequate public transport to get them to their shifts on time. And now they have heard that the staff parking at the hospital is to be closed. How will they get to the jobs that we need them to do? Subsidised parking and rental and living wages? I’m happy to chip in for these too. My daughter needs them and I do too. The best of them also take the counselling of terrified mothers in their stride every day.

Being faced with the mortality of one’s child is one of the hardest things a mother or father can do. The neuro team talk about fighting to keep my daughter alive as their first priority and then after this, fighting to also ensure they preserve as much of her brain function as they can.

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I have become a different person in the last week. My heart bleeds for those who also have loved ones in intensive care. I’ve made firm friends with some people, like the wonderful police prosecutor who had the emotional intelligence to distract me with talk about his wife’s PhD in typography when my heart was breaking. I am also becoming intolerant of some others, those that don’t realise we live on a knife edge and therefore should appreciate each moment that the sun shines and the people we love are safe.

I am intolerant of bureaucracy though. The Health Privacy Act and the Australian Privacy Principles have interacted in an Orwellian nightmare where I can’t un-enrol my daughter from her Master’s degree unless I know her subjects. The university can only tell me her subjects if she is incapacitated because of privacy constraints. Yet, because of their own privacy constraints, the hospital can’t tell her university that she is incapacitated. I’m tempted to take a picture of her unconscious, hooked to an extensive rack of constantly beeping machines and with staples in her head to provide the proof they need.

But I am also intolerant of our politicians and our political processes. I want them to know what this feels like. Not so that they know the pain, which is not something I would wish on even the most emotionally frozen of our politicians, but so they understand the one thing that has become crystal clear to me in this past week: we are all in this together. None of us escapes alive. This is why it is so important that we treat each other, as if we matter to each other. We need to look after each other. And if that means we need to pay more taxes, then so be it.

Those taxes have kept my daughter alive so far. Thank you, fellow Australians. Please go and hug your sons and your daughters, your family and your friends for me. We are in this together and we need to start living like that matters. We need to mutually decide what services we need and then fund them properly.

My daughter is fighting for her life. Positive thoughts coupled with a determination to ensure we have the services she needs, that we all need, may help.

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1 COMMENT

  1. I went through a similar trauma 5 years ago when my then 36year old son had swine flu and was on life support for 9 weeks. The nursing and medical staff were amazing in their care and dedication to Matt and even after he went into total organ failure they stopped at nothing to keep him alive. And all this mastery took place in the suburban Hornsby Hospital. I’m with our writer above. Let us all chip in and keep these dedicated and hard working people up to date with the best education and training in the world and keep our health system world class for all of us. Matt survived but with several disabilities and lives his life happily, most of the time, in the leafy northern suburb of Hornsby. My heart goes out to the staff at Hornsby Hospital, filled with awe and gratitude for their dedication in keeping my son alive.

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