The room we were led into was small and bright and very warm. There were a lot of machines and cables and, incongruously, a corner unit set up with a baby-changing mat patterned with faded cartoon rabbits and a box of wipes. ‘Can you strip her down to her nappy, please?’ The knot tightened. Sarah started taking off Lauren’s clothes. Lauren lay placidly on the mat, blinking up at the bright light. ‘If you could just lift her onto here. Thank you. Now it’s just a case of attaching lots of these little tabs. They don’t hurt.’ The woman set to work, placing what looked like sticking plasters with pressstuds across Lauren’s chest and tummy. ‘What a good girl you are.’ And she was. She lay there quite content, pushing her little legs out occasionally, but not making a sound. Then the technician or nurse, or whatever she was, clipped all the wires into place and connected them up to the machines. ‘We need to run the trace for ten minutes, ideally. It’s sometimes hard with babies, but you’re being a little sweetheart, aren’t you?’’ She lightly stroked Lauren’s hair. ‘If you could just step back a little bit, Dad. Thank you. Sorry. I just have to make sure it’s as clear a trace as we can manage.’ I left Lauren’s side and handed her over to the calm woman. Sarah and I edged back against the wall, while Lauren lay, wired to the machines, her little belly rising and falling contentedly with each breath.
A syndrome. No, we came to talk to a surgeon about corrective surgery for her thumbs. Nothing else. Two hours later, Lauren was pinned to a table with wires and machines, with a woman studying reams of computer printout. Her heart was being tested.
No.
Mr Law had seen something we hadn’t. He’d exposed her to this, then dismissed us.
Lauren lay on the table, unconcerned. Her nappy bagged around her little legs and her arms waved. We’d grown used to her wonky thumbs, we loved her thick hair and her downy neck, her blushed forehead was just her, but he’d said they were signs. He’d taken her away from us, with his big hands, and he’d given her back flawed.
I took hold of Sarah’s hand and we stood patiently, pathetically by, while Lauren was tested.
‘That’s it. All finished.’ The woman switched everything off. Only when she started to peel off the tabs did Lauren finally protest. I scooped her up and soothed her, before carefully easing her flailing limbs back into her Babygro, relieved to get her away from the machines.
Sarah asked the question. ‘Can you say whether everything is all right?’
The technician hesitated. ‘The consultant will need to look at the results… but it all seems normal, from the readings we’ve got today. You’ll be sent an appointment to see Mr Oxhey – he’ll talk you through it all in detail.’
‘But… her heart?’ asked Sarah.
‘Seems to be working fine.’
‘So everything looks normal?’ Sarah again.
‘As far as I can see from these tests, yes. You’re free to take her home now.’
‘Thank you,’ Sarah and I said in unison.
We gathered our stuff together. I carried Lauren, not wanting to put her back into her car seat. I needed the weight and the warmth of her. The technician collected her printouts and walked to the door with us. ‘You were an absolute sweetheart, weren’t you?’ She lightly touched Lauren’s head. ‘Good luck with everything, she’s a beautiful little girl.’ We re-joined the sway of people, and the knot in my chest loosened enough for me to breathe again.
Two further tests, two long weeks of waiting and two curiously impersonal appointments later, the Rubinstein–Taybi diagnosis was confirmed and the knot pulled tight for good.
10
RTS
PHIL
I’D HOPE to have dodged some of the questioning, but when I come back downstairs it appears they’ve waited for me. Sarah is making small talk, trying hard to introduce the air of a coffee morning to this invasion of our family and our privacy. A spasm of irritation passes through me. No matter what the circumstances, Sarah always wants things to be nice. Well, they aren’t.
‘Can we get on with this? I have to get to work by ten-thirty a.m.’ My brusqueness squashes flat the fake bonhomie.
Mrs Winter responds by a return to ‘professional mode’. ‘I gather Rubinstein-Taybi syndrome is quite rare.’
‘Yes.’
‘Were the doctors able to give you much of an indication as to what the impact was going to be on Lauren’s development?’
‘No.’ I snap.
Sarah has obviously had enough of me not playing nice. ‘They told us as much as they could but, like most conditions, it’s hard to predict and it’s very variable. Phil and I agreed, when Lauren was diagnosed, not to research it too much. We were warned that a lot of the online information was very general and could be quite… unhelpful.’
‘So you didn’t really know what to expect – longer-term.’
‘No, not really.’ This time it’s Sarah who’s not playing with a straight bat, because we did find out about RTS. Sarah made sure of that, with the disastrous trip to that bloody awful RTS family event. We exchange a look, but both keep our mouths shut, because what right has this woman to know any of this? She’s only here because they need to put this damn profile together. She’s not really interested in us. She’s here for the other family – the family that has got our daughter. And why should they have a neat, fully annotated handbook to life with a disabled child, when we didn’t?
‘What else do you need to know?’ I ask, aiming to move the conversation on, to its end. Sarah shoots me a warning glance, but Mrs Winter ignores my impatience. She looks down at her long list of questions and ploughs on, absorbing my resistance.
Over the next hour we relate the key events in Lauren’s life: her development, her surgeries, her curtailed life and her simple pleasures. My answers would fit on the back of a fag packet, while Sarah’s help to fill page after page of the silent woman’s book, a steady stream of thin words onto thin sheets of paper; 10.30 a.m. comes and goes, but Mrs Winter still isn’t finished. ‘Now, it would be helpful if you could tell us little bit about the impact Lauren’s disability’s had on yourselves, and the wider family.’
Enough.
I stand up. ‘I have to go.’ Sarah looks at me with a mixture of shock and irritation. ‘I’ve got a meeting. Surely you’ve got enough to be going on with.’ And without waiting for a response, I walk out of the room.
I’m uncharacteristically grateful for my thirty-minute drive to work; it gives me time for the anger that seems ever-present within me these days to subside. What’s happened is bad enough – the not-knowing is driving me mad – but raking everything up is making it worse. Life with Lauren has required us to keep focused on the here and now: no expectations, no looking back, that’s how we’ve coped, at least that’s how I’ve coped; yet since the DNA result, all everyone wants us to do is hack into the past. It’s ripping our life apart.
I change gear and pull onto the dual carriageway, nipping in front of a grey BMW that’s steaming up the inside. The driver, a woman wearing huge sunglasses, gives me an irritated flash of her headlights. I accelerate away from her. If only it were as easy to escape the past.
After we got Lauren’s diagnosis I stuck my head in the sand, but Sarah set off on a mission to find out anything and everything she could. This included getting in touch with a charity for families with RTS kids. Over the months she exchanged emails with some of the other mothers, and she read everything they sent her about the ‘condition’ – some of it aloud to me. But it was her ‘thing’. I didn’t want to think about Lauren having ‘a condition’, of her being like other kids. All I wanted to do was to act like everything was normal and, in wishing, make it true. So when Sarah mooted the idea of going to the RTS get-together, I was lukewarm, to say the least. What ‘sold’ it to me, in the end, was the thought of a weekend at the seaside. If it’d been in Stoke, we’d never have gone. Three nights in a specially discounted family chalet on the coast, with meals included, and free activities for the kids. I reckoned I could
just about manage that. Besides, once James got wind of it, there was no way we weren’t going.
It began well enough: the sun was out, the roads weren’t too busy and, as we turned into the entrance to the park, early on the Friday evening, the bunting was fluttering brightly. We could even see glimpses of the actual sea between the pebble-dashed chalets. The scream of seagulls and the smell of frying chips nailed ‘Welcome to the seaside’ pretty well.
At the reception desk a slack-faced teenager told us our chalet number, gave us a key attached to a fob the size of a grapefruit and handed me a plastic bag with the camp logo on it: a surf-dude bear riding the waves on a fluorescent yellow surfboard, more west-coast California than east-coast Yorkshire. The bag turned out to contain our bedding. When they described the facilities as ‘self-catering’, they obviously weren’t joking. As we were leaving the girl called us back. ‘I’m supposed to give you this.’ It was an A4 envelope, heavy with content. I shoved it in the bag.
The chalet, when we eventually found it, was a small box with a flat roof and a clear view, not of the dancing waves, but of the main roundabout and the laundry block. James rushed up the path gleefully. Inside it was tiny, with narrow doors, a low ceiling and a selection of space-saving fold-up furniture, none of which fitted. The brown blinds lent a dusty gloom to the overall depressing effect.
Two trips to the car later and the chalet was chock-full of our crap, including the travel cot, which fitted fine in every other bedroom we’d ever slept in, but had magically grown to the size of the Isle of Wight on our trip over. It simply would not ‘go’ in our room and, as none of the furniture moved in the sitting, additional sleeping, eating and cooking area, it wouldn’t fit in there, either. We folded it back up and agreed to sort it out later. Which, I guessed, would mean Lauren sleeping in the double with Sarah, and me having to squash myself in alongside James on the sofa bed.
James was bored by the time we’d got everything in, and he started whingeing. He wanted the beach and something to eat and a wee – all immediately. I sympathised. The tiny shower room with the mould-speckled decor fulfilled his need to pee, and a bag of Wotsits staved off his hunger, but the beach would have to wait. Sarah had ominously opened our welcome pack and was looking at the itinerary. ‘There’s a “meet and greet” starting in the restaurant soon, shall we head over?’ Thinking only about food and the possi-bility of a beer, I agreed.
The restaurant was more of a canteen. Huge and loud. Strung along one wall were the serving counters, each lit by the coppery glow of the overhead food warmers. There were already queues building up. Large families with small children criss-crossed the room bearing trays of gravy-covered chips and pizza slices. James’s eyes widened in delight as a mum came past with a tray laden with ice-cream sundaes and chips. But Sarah was walking away from the food counters. ‘We’re over here, look.’ Right down at the far end of the room an area had been cordoned off and, behind the rope, sat a separate group of people. The RTS families. I suddenly wanted to pretend we were just there on holiday and go and sit with the ‘normal’ folk.
‘You go over. I’ll get James something to eat.’ Sarah started to protest, but I interrupted her. ‘If we don’t feed him now, he’ll have a meltdown. We’ll be over in a few minutes. Come on, bud. Let’s see what they’ve got.’
Pizza and chips, ice cream smothered in chocolate sauce and Coke for James, Dutch courage for me, and red wine in a plastic tumbler for Sarah. We were all sorted.
In the time we’d been queuing, the RTS corral had filled up. It was chaotic: people fetching food, talking, others greeting each other like long-lost family members, and a few, like James and me, standing on the periphery looking lost. I eventually spotted Sarah and Lauren through the throng. They were sitting with a couple and their son, a little boy of about Lauren’s age. I steered James towards their table, nodded a hello and settled him down with his mountain of food.
Sarah did the introductions. ‘This is Phil and our son, James.’
The chap stood up and shook hands. ‘Callum.’ He indicated his partner. ‘Alexis, and this is Harry.’ The little boy had both his arms in casts, exactly the same as Lauren had had, after the surgery on her hands. Fingertip to armpit encased in plaster, the same awkward, rigid bend in the middle. I remembered the problems we’d had finding anything wide enough to fit over the clumpy casts. Callum must have seen me looking. ‘Another two weeks and they’re coming off, thank God. Your wife was just telling us about how Lauren got on, when they cut the casts off.’
I smiled at him, recalling the shocking smell of her skin and the deep, red seam of the scars that ran up her ‘straightened’ and ‘repaired’ thumbs. ‘Yeah, she coped fine, really. It just took a while to get her using her hands again.’ I became aware of James demanding my attention.
‘Daddy, Daddy. I can’t do my pizza.’ He was hacking ineffectually at it with a plastic knife.
‘It’s okay, mate, use your fingers.’
Sarah began filling out my response, with timings, physio details, advice and empathy, a useful version of what it had been like, but one softened by some careful omissions. I pulled up a chair, took a deep drink of my beer and started to take in our surroundings.
Lauren and Harry sat side-by-side in their buggies. Two unrelated children from opposite ends of the country, different parents, completely different backgrounds and biology, and yet so many similarities. They had the same slanty eyes and the same pointy nose, the same-shaped mouths, the same dark eyebrows and same dark hair. Again the anger rippled through me. I didn’t want my child to look like other people’s children, I wanted her to look like me. And when I forced myself to look beyond Lauren and Harry, I started to see all the other RTS kids. I saw the same features replicated, time and time again, across thin faces and chubby faces, across boys and girls, across babies and teenagers, and it struck me, like a punch in the stomach, that we were sitting in a room full of strangers that all looked like my daughter.
Yeah, it would be fair to say that the trip to the seaside brought me up to speed on the impact of RTS, so abruptly that it hurt.
11
Pandora’s Box
SARAH
WHEN I told Mrs Winter that we made a pact after Lauren was diagnosed, I was telling the truth. Phil and I did, initially, agree not to go digging up anything and everything on RTS, but I didn’t honour our agreement. The first opportunity I got, I went straight onto Google and opened up Pandora’s box. The litany of statistics and facts was overwhelming, but also brutally informative:
What is Rubinstein–Taybi syndrome?
Rubinstein–Taybi syndrome is a condition characterised by short stature, moderate to severe intellectual disability, distinctive facial features and broad, often malformed thumbs and first toes. Additional features of the disorder can include eye abnormalities, heart and kidney defects, dental problems and obesity. People with this condition have an increased risk of developing non-cancerous and cancerous tumours.
How common is Rubinstein–Taybi syndrome?
This condition is uncommon; it occurs in an estimated 1 in 100,000 to 125,000 newborns.
What are the genetic changes related to Rubinstein–Taybi syndrome?
Mutations in the CREBBP gene are responsible for some cases of Rubinstein–Taybi syndrome. The CREBBP gene provides instructions…
The technicalities were too much for me to grasp, but the rest of it was painfully clear. I was swamped by the detail. ‘Kidney defects’, ‘mobility problems’, ‘obesity’, ‘tumours’; no one had said anything about cancer. Reams and reams of text about the carnage that RTS caused. And Phil was right. I regretted it. I wanted to unread all the problems, I didn’t want to know about what might be and what was statistically possible or probable, I wanted the protection of ignorance.
But that first foray into the facts was just the beginning, because as Lauren grew and her disabilities emerged, I realised that I didn’t have a choice, because if I was going do my best fo
r Lauren, I had to know. Ignorance wasn’t an option.
Which is why, when Lauren was two, I dragged us all to the RTS get-together. I foolishly thought I was prepared for it, that it might be good to meet real families rather than just wading through the facts. But it wasn’t what I was expecting. No, that’s not right, it was what I was expecting. It was supportive and informative and friendly, like being welcomed into a family, but almost as soon as we arrived I realised… it was a family that I didn’t want to belong to.
With each child we encountered, my sense of claustrophobia built. I was okay with the babies and the toddlers, but the older children and the teenagers bothered me. They were a window onto a future that I didn’t want to look through. In the play barn on the first morning an older couple, with their teenage daughter trailing in their wake, came and sat with me and Lauren. Phil was climbing through tubes and careering down slides with James at the time. Without any preamble they asked, briefly, about Lauren, then launched into the history of the struggles they’d had with their daughter: schooling difficulties, funding and provision fights with their local authority, behaviour problems handled badly by teachers. They even went into intimate details about their daughter’s ‘difficult-to-deal-with’ puberty, and all the while their daughter sat and stared at me, passive and unheeding. When a sweaty James and a dishevelled Phil reappeared, I made our apologies, saying that we needed to go outside to let James cool down – any excuse to get away from the weight of the burden that the couple so desperately wanted to share.
Outside it was a lovely day, blue sky, high clouds. The normal business of having a good holiday was going on all around us. There was a steady stream of kids, wrapped in towels with ratty wet hair, coming out of the pool, and there was a game of Crown Green Bowls under way. As we headed to the playground we walked past an elderly couple on a bench who were sharing a bag of freshly cooked doughnuts between them, sugar coating their lips. An amazing vanilla smell rose from the greasy bag. As soon as we reached the play area, James made for the curly slide, shouting, ‘Watch me, Mummy, watch me!’
The Second Child Page 6
