Memoir

Home, together, a family

Imagining a future when the present is purgatory

APPARENTLY, THE STEROIDS saved Charlotte’s life. Taking Charlotte out so early definitely saved Elizabeth’s life. The placenta was killing both of them: starving Charlotte and sending her mother’s organs into failure. A 5 am call back to the hospital shattered my deluded hope that the growth issues from the increasingly frequent scans might just be constitutional, not chromosomal or placental. ‘Two small people wouldn’t make a big baby!’ But two small people shouldn’t make a baby that weighs 420 grams, either.

Pregnancy is a time for imagining what your life will become. The future is full of possibility. Having a baby at twenty-five weeks’ gestation is not one of the possibilities I’d imagined. Dreams of a potential life with three of us came within days of there just being one of us, bereft and alone.

The womb is supposed to be utopia for a foetus. Of course, the hitherto silent but shockingly widespread pain of miscarriage suggests a more complex, sadder reality. Extreme prematurity is a different kind of pain. I knew in the abstract that babies could survive – or die – when born so early. Nothing can prepare you for the eventuality. After arriving at the hospital that Saturday morning, a roll call of specialists came through to explain things. First the obstetrician, who told us to expect delivery within minutes or hours, not days. Then the neonatologist. She gave us a little handout to go with the speech. There were seven green babies and three red babies on the front page. That visual communication will never leave me. It’s brutal in its simplicity. At twenty-five weeks’ gestation, there’s just over 70 per cent chance of survival in a major hospital in an advanced medical system such as Victoria’s. At Charlotte’s extremely low birth weight, however, under 500 grams, the odds on survival lengthen considerably. If your baby gets through the frantic delivery, she’s whipped from the womb to the best artificial womb we’ve created yet, a humidicrib in the neonatal intensive care unit (NICU). Before we could get there, the anaesthetist came through last. The medical team was already managing Elizabeth’s severe pre-eclampsia and HELLP (haemolysis, elevated liver enzymes, low platelet count) syndrome as best they could, and the anaesthetist could treat the pain from cutting her open in both directions for a classical caesarean. There was no treatment for the terror of the situation and – best-case scenario – the many anxiety-inducing months in hospital to follow.

I’ve never felt more alone than in the moments after they wheeled Elizabeth through the surgery doors for her spinal anaesthetic. Waves of fear and crushing uncertainty rolled over me. Eventually the post-op nurse helped control my petrified sobbing. Time had already begun to warp since that 5 am call, and from this glacial point outside the delivery room at about 9 pm, time sped up into a medical blur that was only punctuated by the lead neonatologist saying, ‘Would you like to come and meet your daughter, David?’

Time hasn’t flowed normally since. The NICU is like that. Maybe all liminal spaces are. Hospitals and doctors’ waiting rooms, airports, these strange portals between different worlds, between endless good and bad possibilities. In the NICU time warp, Charlotte’s health has dictated our health. Routine has collapsed into a never-ending series of medical and logistical decisions. We’ve completely lost our ability to support ourselves. Parenthood has come with regression into dependence on our own parents. Through them, a village of family and friends have done the heavy lifting Elizabeth and I have been unable to do. Early on, I wrote to close friends that the experience was gruelling and terrifying, watching an amazing team of nurses and doctors grow your baby ex utero. The technology doesn’t exist yet to suspend extremely premature babies in artificial amniotic fluid. Instead, we parents were suspended in our own purgatory, simultaneously fearing the worst and hoping simply to go home, together, a family.

 

THE OUTSIDE WORLD receded for us on 5 December 2020. And yet inevitably it kept going, too. Much like ours, the outside world hasn’t been settled lately. Time didn’t just start flowing strangely for Elizabeth and me when we entered the hospital in December 2020. It had been off kilter for everyone since January 2020, when news of the pandemic started to filter into our lives from Wuhan. I keep remembering a Twitter post from US writer Bess Kalb: ‘I can’t believe it’s already June,’ she wrote – on 14 August.

Time may have blurred for everyone, but that just heightens the importance of place. The pandemic has been global, but experiences of it have been deeply local. We’ve lived through a natural experiment of sorts. COVID-19 has highlighted the contingency of our lives under democratic and authoritarian government, of electoral timing, of fe/male political leadership, of in/competent bureaucracy, of public and private healthcare, of cruel or kind social welfare systems. In a pandemic, Thomas More’s play on Ancient Greek words with utopia – simultaneously no place and good place – takes on different meaning. Never mind utopia: in a pandemic, there are good places to be, and there are places no one wants to be at all.

Australia is one of the good places. We were living in England when the pandemic began. In late March we managed to board a Qantas flight to Melbourne a day or two before they were cancelled indefinitely. Hotel quarantine started at the end of the week, so we were lucky to spend our fortnight isolating in a house instead. A couple of days in, I developed a sore throat. My mind slipped into hours of feverish, macabre thoughts about our mad dash home. I couldn’t sleep. Why didn’t we hole up in England instead, wait it out? What good is being home if you’re dead? But England is one of the bad places. The most galling thing about the pandemic is that its horrific impact in a country like England was so preventable. Cowardly politics and short-sighted economics got in the way of the simplest cure for viral spread: don’t give the virus millions of new hosts. Every delayed lockdown and other piecemeal policy response has been post-hoc window dressing for early failures. Boris Johnson and co. bet very early on that the nation’s science and technology expertise would provide the magic bullet. That a vaccine for a coronavirus was in fact invented for the first time – and multiple times in multiple places – doesn’t make this misguided technological solutionism the right political path to have taken during such a grave crisis. This utopian political thinking has taken a shocking human toll. As the health, economic and social consequences are still unfolding, it’s hard to know just what reckoning the Conservatives might face at the ballot box. And in the courts? Such maladministration would in any other sector result in serious consequences.

From the NICU, it’s not possible to maintain rage about political or systemic failures outside of your immediate experience, pandemic or no pandemic. Instead, the outside world blurred with the NICU world in unexpected ways. One morning I cried through breakfast, watching the BBC news from the night before. The ventilators in the Covid wards were the same as those for Charlotte and the other babies on life support in the NICU. Everything was identical: the incessant beeping, the flashing alerts on the screens, the humidified air piped in and out, the patients on the edge, whether big or incredibly small. The reporter talked about ‘proning’ the patients to help their oxygenation. This unnecessary conversion of ‘prone’ into a verb annoyed me. He meant they were turning the patients onto their chests. Despite my pedantry I was still struck by the sight of it. We helped put Charlotte prone to improve her breathing, too.

Moments like this made me realise that the hospital is a strange place from which to view a pandemic when the pandemic isn’t the reason you’re there. It also helps crystallise what truly matters. When we could face the thought, we were grateful Elizabeth and Charlotte weren’t dead (yet?). Having a connection to England at a time like this made us grateful to be in Melbourne instead. Would a UK hospital have had enough healthy nurses and doctors for the NICU? Might a parent have brought COVID-19 into a ward of babies on respiratory support? Then one day I noticed the words ‘Public eligibility’ on the identification sticker on Charlotte’s feeding tube. If we’d stopped to think about it earlier, we would have realised we were grateful to live in a country with free public healthcare for those in need. A quick Google search says that NICU beds can cost more than $3,000 a night in Australia. We’re well on our way to half a million dollars. That’s a bill we’ll never have to pay, except – gladly – through our taxes. I wondered for a moment whether, in a pandemic, utopia is just that – universal free public healthcare. But that wasn’t enough for the UK. You also need political leadership and political courage, and good public services, and community mindedness and solidarity, and much else besides. Utopia got complicated quickly in my mind, and yet, at the same time, none of these ballooning criteria actually felt utopian.

 

PEOPLE WOULD SAY, ‘that sounds like parenting’. The worry, the stress, the fatigue. Just wanting your child to be okay, to have every opportunity to lead a good and fulfilling life. Sure. Except extreme prematurity and spending months in hospital is objectively harder, objectively more terrifying. On the other side of level four in the postnatal ward, the new parents were not having conversations about their child needing to get through one day, and then three days, and then one week, and then… They were not learning about the weakness of the blood vessels in their premature baby’s brain, blood vessels that generally disappear by birth for term babies, blood vessels that might haemorrhage and show up on the next brain scan tomorrow or next week. They didn’t think their daughter was dying the first time they hugged her – because of the hug. They didn’t have to watch their child perform a fortnightly re-enactment of the Ludovico Technique eye scene from Kubrick’s A Clockwork Orange. They didn’t watch their baby turn blue, see her vital signs slipping as the emergency buzzer screamed for the doctors to run in.

In those long, torturous moments, I’d feel our potential life together being yanked away. Sitting cot-side, next to the humidicrib, I’d read kids’ books to Charlotte earnestly, fervently. I wanted so badly the normality of reading on the couch, of holding her in one arm with a book in the other. On some level I was mourning the loss of that experience, that potential future, and yet simultaneously hoping for it soon. Everything became bittersweet. Thinking that we’d got through one more interim health checkpoint, so maybe we could be more hopeful now – then remembering it came before the next interim checkpoint. What comes after the interim checkpoints? If Charlotte comes home with us, will I call an ambulance every time she coughs? Do they give us a heart-rate monitor and something to measure her oxygen saturation?

One day, we wandered into the NICU parents’ room to heat up our lunch. Two young girls were playing on the floor. They were about five and seven years old. The younger one asked us, ‘What are you doing here?’ We explained we were here with our baby daughter, and I asked if they had a brother or sister in the hospital. The older sister responded, ‘We have two little sisters, but one of them is in heaven, so there’s only one now.’ Just when you think you’re on top of things, something smashes you off centre again.

The nurses and doctors explain time in NICU through a series of metaphors. ‘It’s a rollercoaster’, a ‘marathon not a sprint’, a ‘difficult journey’. Every cliché is true, and also inadequate. In the thick of it, when you just want everything to stop, it’s impossible to see through to another way your personal world might be. The present is too contingent for the future to exist. As we’ve slowly come out of the worst of it, the world and time have returned too, slowly. Maybe they’ll flood back in when we’re all home, together, a family.

In those early hours and days, we had a crash course in neonatology. As soon as we’d settled into the impossible routine, I tried to put that new knowledge into practice. I’m not sure if I was rude when I was interjecting and correcting the doctors on their rounds. They could have just looked up how long it was since Charlotte’s last blood transfusion or the exact count of haemoglobin on her blood test. This obsessive-defensive parenting was partly self-care, but it was equally part of Charlotte’s care, too. We’ve been told often that the parents are a core element of the team. In some ways I’ve taken that encouragement too far. It doesn’t mean, for example, that I needed to create a parallel electronic medical record system. In hindsight, I suppose I tried to take back some control of the situation by obsessively keeping notes about Charlotte’s health. I tallied these, from my phone: nineteen notes, 30,109 words. By my records, she’s had 113 different nurses (I note when we’ve had them before) and fifty-two different baby roommates. Elizabeth has expressed 61,462.6 millilitres of breast milk. Charlotte’s 110 days old, so that means 111 days for us in hospital. And counting.

While Charlotte’s health has slowly improved, ours has both faltered and been forgotten. Elizabeth had been close to death, but when she was discharged a week after the delivery, her health receded immediately into the background. Ongoing liver and blood pressure issues, iron and vitamin D deficiency, constant blood tests – these were distractions or brief moments away from Charlotte’s bedside. Self-sacrifice became essential as we focused completely on the health of our daughter, even though we were mostly powerless to help her in the beginning. Now that Charlotte is becoming healthier, we’re both skinnier, fatigued, anxious. The initial panic and stress of the situation has given way to a longer term lethargy. While Elizabeth was recovering from her near-death experience, my body reacted almost immediately to the hot NICU room, and in particular the tropical environment in her humidicrib – dermatitis came up all over my limbs. I got athlete’s foot and oral thrush, my immune system unable to push back against the organisms naturally occurring on my body.

One day I remembered the conclusion to JG Ballard’s The Drowned World. In it, the Earth has flooded after solar radiation melted the poles. (While Ballard’s post-apocalyptic world sounds prescient now, his climate crisis wasn’t human-made.) Evolution has sped up for reptiles and amphibians, while humans have slowed down, steadily regressing as they seek to literally and metaphorically keep their heads above water. The book finishes with protagonist Dr Robert Kerans embracing the return to the primordial swamp, walking south from London into the blistering tropical sun and oppressive wet heat, losing his mind and presumably, in the end, his life. With a little luck, the neonatal ward won’t kill me. But as this thought came to my mind, I felt like Kerans, devolving and unravelling, while Charlotte simultaneously evolved in her humid, artificial womb. She’s fit for the future, but I’ve been proven incompatible. Maybe that just sounds like parenting – and getting older.

 

PREMATURITY AND PANDEMIC: it feels as though Elizabeth and I have lived in two parallel dystopias this past year, one personal and one global. From this vantage point, a better world feels decidedly un-utopian. That Charlotte is alive today at all isn’t a miracle; it’s a product of years of publicly funded medical expertise and (mostly) publicly funded research. It’s because hundreds of nurses are willing to be paid far less than they deserve to work difficult hours in public hospitals and still smile at almost-broken parents while caring for their children. To treat prematurity and to end the pandemic, we don’t need utopia – we need to value the public services we already have. Rather than valuing those public services by funding them, political thinking in recent decades has travelled in the opposite direction. Throughout the pandemic, we’ve heard awful stories of a different element of care: the many abuses in the nation’s aged-care homes. A stronger argument for the danger of privatising public services would be hard to make. Profit and care are mutually exclusive concepts, for the most part. A resolution for this mess might seem like a big change, but really, it’s a simple one: diverse public services, delivered with compassion and care, designed in the understanding that any one of us could quickly be living a very different life to the one we’d imagined.

Therein lies the rub. Charlotte is alive because of the amazing public healthcare she’s received. But it’s also down to chance. We’ve been incredibly lucky that she was strong enough to survive those awful early weeks. We’re lucky she was a girl, not a boy, as girls tend to fare better when born extremely premature. It’s odd to consider yourself lucky when you’re still in the midst of the most horrible experience of your life. But Charlotte is strong and beautiful, and our ability to imagine a future, together, a family, is slowly returning. During those terrifying early weeks, when I was reading to her and desperately holding onto dreams of reading kids’ books at home, our favourite story to read was Mitchell Toy’s The Midnight City. Charlotte fell asleep the first time I read it, my voice floating through the open armholes of her humidicrib. Her tiny little body looked relaxed, peaceful. ‘Peaceful’ was a word that could have gone in either direction at that point. We’ve both read The Midnight City so many times now that I can recite most of it by heart. It starts with these lines:

‘Let me stay up late,’ I say to Grandad in his chair.

‘Let me be awake at midnight just to see what’s there.’

Forget utopia. I just want Charlotte to be awake at midnight so she can see what’s there, too.

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