The Upside of Down Read online

  As a little girl I could change my doll’s nappy like an expert. But now after twenty minutes, half a box of wet wipes and two fingers pricked by safety pins, I turn my new baby’s tiny wriggling bottom over to the 22-year-old nurse and wipe away tears of inadequacy. The nurses stride past his incubator, efficient and skilled. I am forever hopping out of their way, intimidated by the machines, unnerved by my total lack of know-how. Whoever said that mothering comes naturally hasn’t tried setting up the relationship with two nurses, a chorus of beeps and an Air Shields C450 Infant Incubator in attendance.

  Weighing in at just over two kilograms, Aidan turns out to be a heavyweight in the unit, where birth weights below one kilo are common. Despite his relatively large size, when I pick him up he feels fragile, as though my clumsy hands might break this new life into hundreds of tiny fragments if I accidentally squeeze too tightly. When it’s time to eat he wakes, drinks about a thimble of milk, and then glances up with his sweet blue eyes, tossing a satisfied look in my direction before dozing off to sleep. The plan is to keep him awake to feed longer, so I rub his twiggy arms and gently pinch his cheeks, feeling like a criminal for disturbing his contented sleep. The eyelids open momentarily before slowly drifting back down, heavy and lethargic as though he’s recovering from a big night out. I stare at the gently breathing body in my arms: Is this how life with a premature baby will be? The baby books all suggested we’d be teaching our newborn to count sheep but instead we may be pumping him full of double-shot espressos.

  I try to read or wander down to the parents’ kitchen and lounge where other vacant, fatigued parents congregate. The mothers wander from the kitchen back to the nursery dressed in sloppy tracksuit pants or some, those just post-birth, in bathrobes or pyjamas. After the first few days I begin avoiding the room altogether so I’m not constantly forced to replay the statistics that confined us to this place. How early? What weight? When are you going home? The day I am discharged from the hospital, when Aidan’s about one week old, is achingly sad. I give my new son a kiss on his forehead, pick up my suitcase and go home.

  About ten days after the birth, I bump into Karen in the hospital corridor.

  ‘Susan, I have been trying to catch you for days,’ she scolds lightly. ‘You never answer your phone at home.’

  ‘No, I do. It’s just that I’ve been in the Neonates about twelve hours a day.’

  ‘Have you taken a look in the mirror lately? Your eyes are sunken … you look terrible. You know it’s essential that you take good care of yourself, get plenty to eat and …’ My attention wanes as she rattles on about nutritional drinks and relaxation methods. There may be sense in what she’s saying but right now it feels about as comprehensible as a translatedfrom-Chinese appliance manual. I find it impossible to imagine whizzing up carrot juice slushies and running hot baths when my itsy bitsy offspring can’t even slug back a capful of milk without needing recovery time.

  I have spent thirty-one years worrying almost exclusively about me: exam scores, jobs, sporting success, even the profile of my butt in jeans. And now here I am, torn to pieces by this two-kilo package. I’m surprised by this change of focus, this selflessness. It’s not planned or contrived, it’s just suddenly there, attached to me the way my leg is jammed on to my hip.

  ‘Yeah, okay, thanks for that.’ I wave weakly and try to continue past her, towards the Neonates. ‘I have to go now, but I’ll keep it in mind.’

  ‘Hold on!’ reaching her arm out in front of me. ‘I’m not done yet. We still have several more issues to discuss.’

  ‘Oh, sorry. What are they?’

  ‘Are you still having any bleeding?’ I contemplate trying to avoid the question, but can’t muster up the creativity, so I nod in reply. ‘How much? Is it a lot?’ she asks.

  ‘Um, I’m not sure, but I think I’m fine.’ I have neither the time nor the energy to be ill, focusing all of my energy on Aidan’s improvement. After a few more questions she herds me into an examination room and calls a doctor. Later that afternoon I’m sent to the operating room to have my womb vacuumed and tidied up—like it’s my lounge room—with the bits of placenta, accidentally left behind, removed.

  My parents arrive from California to support us when Aidan’s about two-and-a-half weeks old. Despite the fact that I have lived overseas in Germany, the UK and New Zealand, my mom and dad have managed to remain ‘in the picture’, partly because my mom’s career as a travel agent allows them to hop on planes easily. They arrive bearing stacks of miniature outfits with lentil-size snaps and buttons, like something out of Barbie and Ken’s wardrobe. They ‘ooh and ah’ at their fifth grandchild—like he was the first and only—focusing on his cobalt eyes and dainty fingers, ignoring the skin-and-bones appearance. My mom is bursting with energy, anxious to be of help, and nearly unstoppable once she sees the disaster of our house, piled with weeks of laundry, unpacked holiday suitcases and bare fridge. My dad will tackle any job on the list; the evening I return home to find him battling Wellington’s cyclonic winds to hang the Barbie doll clothes on the line, I’m emotionally undone by the sight. The two of them help me shop for a changing table and cot, set up Aidan’s room, buy a pram. Then we wait.

  But he doesn’t come home.

  A few days after they arrive, Aidan’s sent to the ICU with confusing symptoms. Something’s not right. Several days later we’re woken by a call in the depths of the night. I scrabble around for the phone, reaching over Darryl’s unmoving body, with the cold dread that accompanies middle-of-thenight calls.

  ‘Hello. Is that Mrs Biggar? I am the registrar in the ICU.’

  ‘Oh, yeah, hello. Is everything okay?’

  ‘Yes, sort of. At this stage it’s nothing to worry about, but I’m just calling to let you know that we have some suspicions that Aidan might have meningitis.’

  I don’t know what to say. Panic fills the cavity in my chest, rushing in like water filling a tub. I elbow Darryl firmly in the temple to wake him. We huddle over the phone, drawn towards it for information but deterred by its potential to give bad news. The registrar continues.

  ‘So, we are going to do a lumbar puncture on him now. There’s no need to worry or to come in to the hospital, but we just thought we should inform you and your husband. So, yeah, no need to worry. We’ll let you know how it goes when we see you in the morning.’

  Fine. Good. I think I’ll just roll over and go straight back to sleep now that I know our baby, currently about the size of a sweet potato, will be curled up and have a needle poked into the bottom of his spine.

  Unfortunately for our marriage, as I hang up the phone Darryl carefully repositions himself then almost immediately begins to snore gently. I’m more than surprised; I’m furious.

  ‘Darryl, wake up! How can you go to sleep after that phone call?’

  He stirs, saying nothing. I grab his left shoulder and shake it.

  ‘What? What’s the matter?’ he replies, genuinely sounding like he doesn’t know the answer.

  ‘What do you mean? You know what the matter is. Aidan might have meningitis and they’re about to do a lumbar puncture.’

  ‘Yeah, I know that. But he also said not to worry about it, that they would let us know the results in the morning.’

  ‘Of course he said that. What else could he say? But what he means is “This could be a really bad thing and I’d be worried if I were you.” I can’t just go back to sleep. Maybe we should go in to the hospital …’

  ‘I’m not going to the hospital. I’m going back to sleep. Don’t worry about it. He’ll be fine.’

  ‘How do you know he’ll be fine? You don’t. I can’t just go back to sleep, damn it.’

  ‘Goodnight, Sue.’

  So far, Darryl and I see the world through a very different lens when it comes to managing the stress of illness. This does not bode well.

  And all I know about parenting so far is that I love my son and that this feels like hell.

  To our relief, the test is neg
ative. But I’m surprised by the way this scare affects me. I find myself arriving earlier and staying later at the Neonates, fearful of leaving my vulnerable baby, suddenly conscious of all the nasty bugs and potential disasters swirling around him. I had always been fairly relaxed about health issues, the kind of person who rarely visited the doctor or stressed about lab results. But over this month I can see that changing. Nobody in prenatal classes warned me that the world might feel like such a different place after the birth, that there would seem to be so much more danger around once I had someone relying on me to keep them safe.

  Several days after the meningitis event, I arrive at the Neonates to find an official-looking letter on top of Aidan’s incubator. This is most likely an oversight, as the doctors are generally conscientious about discussing issues with us, rather than leaving vital letters lounging around like old copies of The Women’s Weekly. The letter is from the National Screening Unit which, apparently, tests newborns for rare but life-threatening disorders.

  ‘Dear Doctor … blah, blah, blah … I need to inform you that this baby has tested positive for cystic fibrosis … blah, blah, blah.’

  Noticing my distress, one of the nurses comes over to check on me. No, she hasn’t seen the letter. She rushes to get the doctor from across the room.

  ‘What is cystic fibrosis and does Aidan have it?’ My throat is constricted and dry, the words barely escaping. My mind races with names of medical conditions and images from the past, madly sorting and filing them. Cerebral palsy: brain issue. Muscular dystrophy: affects the muscles. Multiple sclerosis: something about inflammation and muscle weakness. Cystic fibrosis: what on earth does that mean? I don’t know what it is, but I know we don’t want it.

  The doctor, a Canadian, deftly avoids the first question and tut-tuts the second; assuring me that many premature babies have false positives on these tests. She chides me for over-reacting. This woman has obviously undergone some kind of neurological procedure to excise any residue of empathy.

  ‘Aidan will be re-tested, but don’t give it another thought, as I’m sure it’s nothing.’

  That night, after returning from the hospital, we greet my parents and then make a rapid retreat to the bedroom with our dictionary. We sit on the edge of the bed, huddled together flipping pages until we reach it. Cystic fibrosis is defined as a multi-system genetic condition, primarily affecting the lungs and pancreas. It describes a terrifying and steady deterioration of the lungs due to a lethal cycle of infection and inflammation. The decline begins at birth, continuing on until premature death, normally in early adulthood.

  The dictionary describes a chronic cough, unsettled nature due to poor digestion, malnourishment. Aidan has no cough, none. His lungs, according to the medical team, are fine. He’s a contented baby. And although a bit skinny, he looks like King Kong compared to his neighbours in the Neonates. The symptoms don’t fit. Besides, there’s no history of it in the family. It just doesn’t make sense.

  Darryl and I say nothing. He gets up and goes to the bathroom to wash his face. Unable to talk to my parents, to discuss this unimaginable new possibility, I begin picking up scattered clothes and folding them away in the drawer. Please. Dirty socks in the laundry basket. Oh please. Crumpled summer dress from the chair to the closet. Oh please, no. We have been through enough. It can’t fit. I can’t do this.

  The next few weeks are ridiculously hard as I try to focus on anything but this odd-sounding condition. Over and over I replay the doctor’s prediction that it’s only a false positive. It’s an enormous temptation to simply park myself on the floor of the Neonates and rock slowly with worry. Instead I try to hum songs by my favourite artists—Indigo Girls, Dar Williams, Bruce Springsteen, anything. I find myself longing to knock the clock back to the days of my simple childhood fears: no boyfriend, no beauty marks and last pick on the sports team. Back to the days before realising that an innocent baby might be born with debilitating challenges. I pray sporadically and plug my ears to cast out the demons of doom flitting about my head. The more I try to ignore it, the bigger the temptation to worry becomes, like trying not to polish off the entire box of Tim Tams while grinding out the annual tax forms at one o’clock in the morning.

  Finally, and somewhat without warning, when Aidan is five weeks old he shows enough general improvement and weight gain that he’s discharged from the hospital. Darryl and I are given instructions on caring for him at home, the doctor makes a follow-up appointment at the hospital and tells us that a community nurse will come and see Aidan. We pack up his clothes, toys, cards from the walls around his bed and then gently place our new baby in his car seat. He is so small that he slumps into a heap and we can barely get the straps around him, it’s like trying to gift-wrap a pile of jelly.

  It’s Valentine’s Day. When we first arrive home there’s a lot of hustling about to organise life around Aidan; ridiculous that one tiny presence can send four grown adults tearing around like spooked chickens. But then, as usual, the sweet little lump falls asleep. After we put him to bed my parents offer to babysit and Darryl and I share a quiet dinner at a local restaurant, celebrating the end of our medical worries.

  The next morning mom washes the laundry, folds tiny baby outfits and plans dinner while dad paints the final coat on the second-hand nappy-changing table. After so much chaos, it’s a relief to immerse myself in the mundane nature of this new baby routine. No more ‘code call’ announcements over loudspeakers, no beeping monitors, no red-eyed parents at the next bed, no blood tests or daily weighing, no more wrist and ankle bands. Today is the beginning of our normal life as parents; the life we envisioned throughout the pregnancy.

  Later that afternoon my dad and I are sitting in the living room reading when the phone rings.

  ‘I’ll get it, Susan,’ my mom calls from the kitchen. I return to my book but a moment later look up to find her standing over me with the phone in one hand.

  Now my mother has skills that range from making an excellent spaghetti sauce to organising a two-week tour of Tanzania. But holding a poker face is definitely not in her skill set. Worry is pouring out of her like sweat.

  ‘It’s the hospital doctor. He says it’s about Aidan’s second test results.’ I take the phone from her.

  We have a brief discussion. Immediately after hanging up I can remember only two main points from the conversation. First, the doctor said it was likely Aidan did have cystic fibrosis. Second, we would have to wait two weeks for a definite answer because he was going on holiday the next day.

  Generally, I don’t hate people. It’s not because I’m so virtuous, but being oversensitive and, okay, a little emotional, I’m not the type of person who can easily manage enemies. But at this moment, anger is streaming through my veins like hot snake’s venom. This man may have a trail of letters after his name and framed diplomas on the wall, highlighting his medical expertise; however, with bathers to pack and a plane to catch, his supply of compassion and helpfulness has run dry.

  ‘There must be some other doctor who can meet with us while you’re away?’

  ‘No.’

  ‘Isn’t there a way you can access the results before leaving?’

  ‘No, it’s not possible.’ Then, the clincher from him: ‘Another few weeks isn’t going to make a real difference for Aidan’s health.’

  Maybe not Aidan’s, but it could most certainly be life or death for my frazzled mental state. I mean, really, we’re not talking about a diagnosis of colour-blindness.

  It turns out that doctors come in many shapes and sizes, some much more attuned to patients’ and families’ needs than others. David, our family GP, is a man with a listed home phone number and astonishing kindness, despite being pulled away from his meat and three veggies by a frantic new mother.

  By eight o’clock the next morning David has organised an appointment with a different, non-holiday-bound, doctor. Several hours later Darryl and I meet him and a geneticist at the hospital. We listen as he confirms the
diagnosis of cystic fibrosis.

  I climb into the back seat of the car, alongside a peacefully sleeping Aidan, for the drive home. In my husband’s typically steady and unemotional way he has stuffed the news in some pocket, returning to work with the vague expectation that life as we know it will continue. I could no more do that than tie my ankles behind my head.

  My dad is driving the car, my mom silent beside him. They are in New Zealand to wash nappies and rock crying babies, not help us pick our way through grief and shock. The mood is brittle; talking seems like something I should do, to comfort my parents and be comforted. But my words have vanished, left behind at the hospital, swept away.

  Instead I stare blankly at familiar buildings and streets flashing past—the optometrist, bank, primary school. I’m surprised to see people casually walking to lunch and doing their shopping, the kids running in the playground appear relaxed and happy. Wellington, on this clear morning, looks so much like it did an hour ago, yet it can’t be the same place. Everything has changed.

  2

  DEFINITIONS

  In the weeks that follow Aidan’s diagnosis, Darryl and I graduate from medical kindergarten, pressing on through grade one. We quickly learn to sift through confusing New England Journal of Medicine articles, ferreting out any helpful scraps of information. I read books and articles at two o’clock in the morning, while feeding Aidan. We both rake the internet, visiting websites relating to cystic fibrosis. There isn’t time to even crack open the non-medical What to expect the first year parenting book.

  This is not what we expected.

  For most of my life I had been, like so many other people, happily ignorant of the medical world. My three sisters became nurses but I studied politics. My mom volunteered at a hospital while I steered clear. Apart from a few sports-related injuries, I managed to avoid white coats and waiting rooms altogether. Sports and fitness formed the core of my life. When aged eighteen I won a scholarship to play volleyball at Duke University, playing and training more than twenty-five hours each week. As life went on I assumed I would remain indefinitely in that exclusive class of healthy people, an elite group who pass by hospitals without entering, dropping gold coins in buckets labelled with unpronounceable medical conditions—giving partly out of generosity, partly as a superstitious offering to the gods of good health.