The Second Child Read online

  I select the ‘Ali’ photo with the clearest shot of Lauren’s face and the one taken on the first day and I put them side-by-side on the carpet. I kneel over and study them, my face lowered as close to the images as possible, looking now for what I didn’t see then. Is it the same vulnerable little body or is she a touch longer in the second photo? Does a baby visibly grow or just unfurl in the first few days? Is it the same shock of dark hair? It looks fluffier in the later shot, but she’d have been bathed by then, wouldn’t she? Not by me, by one of the nurses. Am I looking at the same small, fragile skull? Is it the same shape? Are the scrunched-up features the same? The nose? Is it flatter? Are they the same curled hands? I study the hands closely. In both photos their tiny fists are curled shut, hiding the fingers and the thumbs. With the weight of hindsight heavy on my back, I know that the little fists on the second photo hold tight the first clue to Lauren’s disability.

  The hard lump that lies buried beneath my ribs shifts.

  I did not notice that they had swapped my baby.

  I did not notice that there was something wrong with my baby.

  How is that possible?

  PHIL

  When I get home from work Sarah is even more subdued than normal, if you can call the last month ‘normal’. The whole house picks up on her mood; well… James does, he takes himself off to his room at the first opportunity and shuts his door. Through the ceiling we can hear him plucking away at his guitar. Things must be bad if it’s driven him to practise. I’m guessing it’s The Beatles’ ‘Let It Be’, but I could be wrong.

  Lauren is, as always, Lauren. Content. Unfazed. Unaffected by the storm raging around us, quietly insistent that we meet her needs, which are simple: feed me, sit with me, sing to me, love me. Sarah covers the first requirement, me the second and third, both of us the fourth. The same tag-team approach that’s served us well in the past.

  It’s not until Lauren’s settled asleep, I’ve showered and we think James has gone to bed that Sarah approaches me. She comes into the lounge clutching something in her hands. She sits alongside me on the sofa, a seat gap between us.

  ‘I found these.’ It’s a handful of photos, old photos. Again the sense of our life as a minefield creeps up on me, but this time I know I can’t run away from whatever it is we need to confront. Sarah passes the photos to me. ‘They’re from the hospital, after she was born.’ I hold them carefully, a small pile of the past, and wait for her to tell me what she wants me to find in them. ‘I was looking to see if we had photos of both of them.’

  I know immediately what she means. ‘Do we?’

  ‘I think so.’

  I deal the photos out onto the cushion between us. Seven in a row. She points. ‘This was the day she was born.’ She slides the photo apart from the others, ‘And these were taken after she’d been in the nursery.’

  It’s like a peculiarly cruel version of ‘Spot the difference’. I study the freeze-frame images of the baby… two babies? A froth of dark hair and a tiny squashed face. I can’t separate them. We just assumed she was ours. Why would we not? Why would anyone not? I pick up the isolated first photo and hold it close to my face, seeing if I can squint the image clearer, trying to see the face of my actual daughter.

  The heavy thud of James coming into the room jolts me back into the present. He stands over me like an outsized child in his tatty boxers and T-shirt. ‘Why is Mum in the kitchen crying?’

  I scoop the photos back into a pile. ‘She’s just a bit worn out with it all.’ He casts me a look and strides out of the room.

  I’m too slow. By the time I’ve put the photos away and gone to find and comfort Sarah, it’s too late. I stop short in the doorway. Sarah is standing at the sink, with her back to me and next to her, with his arm wrapped around her shoulder, is James.

  8

  A Tiny Glitch

  SARAH

  MRS WINTER and her colleague are scheduled to arrive at nine o’clock. I see their car pull up just before eight-thirty. They sit outside waiting, while Phil and I drift from room to room, uncomfortable in our own home. We both jump when the doorbell rings.

  We show them through to the lounge.

  ‘Are you happy for us to get under way?’ We nod. ‘As we discussed on the phone, we’ve started pulling together all Lauren’s medical notes, and the school has been very responsive in providing us with the relevant information regarding her education. Thank you for giving your permission for us to access her records. What we want to do today is put together a more detailed picture of Lauren, of her life with you, her development, the key milestones in her life, her family, her likes and dislikes, that kind of thing.’ Neither Phil nor I say anything. The other woman sits poised, a notepad resting on her knee, the pages blank. ‘I appreciate it sounds a little daunting, trying to sum up fourteen years, but to help we’ve drawn up some key questions to act as prompts. We thought it would make sense, if it’s okay with you, to go back to the beginning, to when Lauren was a baby.’ I know what’s coming next. ‘Perhaps we could start with her diagnosis?’ The point at which she became disabled.

  Phil looks at me, expecting me to launch into my well-worn fact file of ‘life with Lauren’, summing up our child in easily digestible chunks. I’ve spent a lot of time across the past fourteen years doing just that, bringing social workers, teachers, doctors, nurses and complete strangers up to speed on life with an RTS child, but this time I’m hesitant, this time the end recipient isn’t some anonymous professional, it’s Lauren’s birth parents.

  Mrs Winter looks perplexed. ‘Are you happy to proceed? I can explain what we need in more detail if you feel…’

  I rouse myself. ‘No. Sorry. I was just thinking.’ Thinking that my life is no longer my own, nor my family.

  Phil says. ‘Yeah, let’s get started.’ He wants this over with.

  Mrs Winter begins. ‘So, I gather the diagnosis was made when you were referred for Lauren’s thumbs.’

  I take a breath, look at Phil and start to tell her.

  When Lauren was four months old the midwives decided there was something wrong with her thumbs. As her hands relaxed, it became clear that she had wonky thumbs. We thought they were cute, like she was giving a big thumbs-up to life, but the nurses at the clinic thought we should get them checked out. That’s why we were referred to see someone called Mr Law, a paediatric surgeon. We went along, thinking the worst that could happen was that she might need some corrective surgery; we were wrong about that.

  The waiting room was busy when we arrived, lots of couples and children and a strong undertow of anxiety. Eventually we were invited into one of the consultation rooms. There were two empty seats. Sitting on a swivel chair in front of a desk was a large man with a big face, and standing behind him, along the wall, were four or five other people, medical students we presumed, though they weren’t introduced. The big man, Mr Law, wasn’t wearing doctor’s whites. He wore a tweed jacket, a bright-yellow shirt and a turquoise tie that went with neither.

  Lauren was wrapped up warm in her all-in-one suit, strapped in her car seat, safe and sound and oblivious. Once we were settled, Mr Law asked some general questions about my pregnancy and the labour – all the same basic questions that I’d been asked before. He nodded and said, ‘Shall we have a look then?’ I unclipped Lauren and lifted her onto my lap. He came forward on his chair and took hold of one of her hands. He laid her little fist on his palm and studied her thumb, then he unfurled her fingers, like you would smooth out a paper curl. The minute he removed his fingers, Lauren’s hand curled back up into a fist. He repeated the process twice. Then he took hold of her wrists and held up both her hands, comparing the bend in her thumbs. Held like that, in such an unnatural position, you could see how misshapen they were, each thumb making a right angle from the joint. Mr Law studied her thumbs. We all studied him studying her thumbs. It was quiet while he deliberated. He released her wrists and her little arms flopped back onto her lap. He pushed himself backwards i
n his chair. Still he didn’t say anything. Then he unnerved me – he scooted forward again and took hold of her head in his big hands and studied her face. He was so close that I could see the scrape on his neck where he’d shaved. Suddenly he was brisk. ‘Would you mind waiting outside for a moment? I want to get some information sent through. It shouldn’t be long.’ He pushed his chair away from us and we were dismissed.

  We went and sat outside. The waiting room was even busier, and still more people seemed to be arriving. A woman with a little boy of about three, who was playing aeroplanes between the seats, looked at Lauren on my knee and smiled. I smiled back.

  ‘Why do you think he sent us out?’

  Phil shrugged. ‘Don’t know.’

  ‘He wasn’t giving much away, was he?’

  ‘He’s supposed to be one of the best surgeons.’

  ‘I know.’ Lauren squirmed and started to grizzle softly. ‘She’s getting hungry, maybe I should give her a feed?’

  ‘Yeah, okay.’

  ‘Phil!’

  ‘What? Sorry. I just think we need to wait to see what he says; there’s no point second-guessing what he’s going to advise.’

  I fed Lauren, then walked her up and down until she dozed off. She grew heavy in my arms as she went off to sleep. I eased her back into her car seat. While we waited, Phil and I made distracted attempts at day-to-day conversation, but it was hard. We drifted into silence and instead watched the comings and goings of the other families. In they went behind closed doors, then out again, like figures on a cuckoo clock; some emerged chatting and relaxed, presumably those at the end of their treatment, while others were silent, holding tight onto their children, in a rush to get away. Our door finally opened and one of the junior observers asked us to come back in.

  Phil put Lauren’s car seat on the floor between our chairs, out of sight of the phalanx of white coats. Mr Law began talking about her thumbs. I braced myself. ‘Surgery will be advisable, probably desirable, given the acute angle at the joint; unfortunately, the distortion will only increase with age as her hands grow. Her pincer grasp will be affected in the medium term, adversely… I’m afraid. But before we look at the thumbs, I think it’s important that we get you in to see the hospital geneticist. I’ll call through and make an appointment for you. Get you to see the team as soon as possible.’ I was confused about why a surgeon was suggesting that we see a geneticist, but Mr Law hadn’t finished with us yet. ‘I’ve seen thumbs like this once or twice before and it’s characteristic of…’ a muffled boom… Characteristic. That was the point at which Lauren’s bendy little thumbs stopped being a personal quirk and became a marker of something far bigger. Then he said ‘syndrome’ – something-or-other syndrome. Each word detonated an explosion, one echoing thud after another. A syndrome could only mean something bad. This was something worse than her thumbs; this was something else altogether. At this point he seemed to be talking to the assembled students rather than to us. His chair was angled away, taking in his audience, allowing him to avoid eye contact with either Phil or me.

  I glanced at Phil. His face was rigid, his body tense. In profile, I could see the tightness in his jaw. He refused my silent plea to look at me. Neither of us looked down at Lauren. Mr Law was still talking. ‘But it isn’t only the thumbs; the facial features are also very reminiscent of’ – something-something – ‘children: the narrow palate, the marking on her forehead and the excess of hair, they are the indicator traits of’ – something-stein. ‘That’s what I wanted to check with a colleague while you waited outside. The genetics team will do all the necessary tests. I want to stress that’s it’s really not my area, but I believe it’s caused by a deletion on chromosome sixteen, a small glitch, it occurs soon after conception; but we’ll need the lab work for a definitive diagnosis.’ He reached for his pen, a fat, old-fashioned fountain pen, and dashed off a note, still avoiding eye contact with us. Then he seemed to address his acolytes again. ‘We’d best get the ECG done straight away to establish heart health. That should be done today.’ He held out the scribbled note towards us. After a long second, Phil reached forward to take it. ‘It’s a precaution. It’s liable to be fine – any cardiac issues would probably have presented at birth.’ Now there was something wrong with her heart. ‘Do you have any questions?’

  Of course I had questions, a cacophony of half-formed thoughts gushed through me. He looked from Phil to me, and back at Phil.

  ‘But you think you can do something about her thumbs?’ Phil seemed to have deleted the past ten minutes.

  ‘Yes, but let’s get everything else looked at properly first. I’ll pencil in to see you in about three months’ time.’ I didn’t even realise that we were finished. Mr Law rose from his chair and held out his hand. I watched Phil and him shake on it, like business colleagues. ‘Ground floor, Clarendon block. They’ll sort you out with the ECG. I’ll ring ahead.’ We were being dismissed. I almost expected him to say, ‘Good luck’, but he didn’t. Phil bent down and picked up Lauren’s car seat and I stood and followed him out of the room, too stunned to do anything else.

  And that’s how it began.

  9

  A Beautiful

  Little Girl

  PHIL

  SARAH’S DETAILED recall of how we found out there was something wrong with Lauren knocks some of the indifference out of Mrs Winter. Her expression shifts subtly as Sarah talks, a dawning realisation perhaps that her ‘unusual case’ involves real people. Us. She listens carefully and doesn’t interrupt with any questions. Why would she? My wife is fluent and accurate in her replaying of Lauren’s diagnosis, so much so that it catches me off-guard. It’s something that we don’t talk about, because what’s the point? It happened; and talking about it, comparing notes on how we felt and what we remember, isn’t ever going to change that. I excuse myself and escape to the only place I know I’ll be guaranteed some peace: the bathroom.

  I sit on the side of the bath and listen to the burble of their voices coming up through the floor. We didn’t realise it at the time, but when we left Mr Law’s consulting room we were stepping on to a treadmill, one that has been moving beneath us ever since. There’s no getting off, no way of changing direction, no resetting the speed or the destination – we go where Lauren’s faulty DNA sends us. And again and again it has sent us into the clutches of the medical profession. Because that initial diagnosis was just the beginning.

  After we’d been ejected from Mr Law’s presence, Sarah and I joined all the other people swilling along the hallways of the hospital. I needed us to keep moving, away from his office, away from what he’d said. As we waited for the lift a smelly old guy, wearing a donkey jacket over his hospital gown, leant on his drip-stand and coughed, repeatedly. I moved Lauren to my other arm to get her away from the spray of germs. Sarah stood mutely beside me. We shuffled into the packed space. I rested Lauren’s seat against the back wall and instinctively Sarah and I closed in around her, turning our backs on everyone else. She was still fast asleep. Unaware. As she should be. Our Lauren, the same little girl who went into that bloody room an hour ago. It didn’t make sense. She’d had all the usual tests. Nothing wrong. An endless series of midwives had weighed and examined her; no one had said anything – just that she was a poor feeder. It didn’t make sense. And even Mr Laws wasn’t sure. He’d needed to speak to someone else. He was a surgeon, not a specialist. He could be wrong.

  Sarah reached out and stroked Lauren’s little fist, breaking my torrent of thoughts. She looked shell-shocked. I wanted to comfort her. ‘It’ll be all right. We’ll cope with whatever it is.’ Sarah nodded at me. ‘What did he say it was called?’ But the lift doors opened and we had to turn and re-join the masses. We emerged from the lift back into the Reception area. ‘Rubinstein-something… I didn’t get it. Did you?’

  ‘No.’ We were getting in people’s way. ‘Where are we supposed to go?’ Sarah looked at me for direction.

  ‘I don’t know.’

&nbs
p; ‘He wrote it down.’

  Only then did I remember the note crushed in my hand. I put Lauren’s car seat on the floor and uncrumpled the paper. People swerved past us. There was a scribble of loopy, blue-inked letters that I couldn’t read. ‘He said an ECG, so it must be the cardio unit, I suppose.’

  It was the Cardiology Unit, a short walk around the corner into a high-tech, high-spec, white-light environment, where we were expected. There was no waiting around, no joining the ranks of the non-urgent outpatients sitting in the waiting area; we were taken straight through into a consulting room and asked to wait a few moments. The door shut. The quiet that filled the room was sharp and brittle. I couldn’t break it.

  Sarah could. ‘What do you think they’ll actually do to her? The tests?’

  ‘I don’t know. He said it was just a precaution. She’s been fine. She’ll be fine. We’d have known, if there was something wrong.’

  Sarah didn’t respond. She bent and unclipped Lauren from her seat and held her up against her chest, stroking her back. It was the position we always held her in to soothe her when she was upset or fractious, but Lauren wasn’t crying. I wasn’t even sure she was awake. The only bit of her that was visible was her head, a halo of tufty dark hair that brushed against Sarah’s cheek. I felt a wave of loneliness. I wanted that embrace, I wanted to hold her close to me and protect her, but I sat empty-handed.

  A young woman came in and explained the test to us with the minimum of jargon and in a reassuringly calm voice. She stressed how important it was that we tried to remain relaxed. ‘It’s important that she doesn’t pick up your stress. We want her as happy as possible, so that we can get a clear read.’ My body was unable to follow her directions as a knot of anxiety formed in my chest. She explained that they were going to connect a series of monitors to Lauren and take measurements of her heart rate, blood flow and oxygen saturation levels. ‘Nothing invasive at all. Do you want to bring her through now?’ No, I didn’t, but Sarah had already stood up and was following the nurse.