It was a progressive, inherited degenerative muscle disorder that affected boys almost exclusively, and girls carrying the defective gene were usually although not always unaffected. The deterioration, caused by a lack of dystrophin in the muscles, slowly but surely crippled the person until their body was unable to support itself. They usually died of heart or lung problems in their teens or twenties due to severe scoliosis compressing the chest cavity, but the spinal curvature was one of the things that could be improved. However, even she could see it didn’t look good and the surgeons were going to have their work cut out to fix it—assuming the young lad got the chance. ‘How old is…’ she peered at the plates ‘…Craig?’
‘Sixteen—so technically he’s on the cusp of moving up to the adult ward, but as it’s me who’s dealing with him I wanted him on Paeds—it’s more fun, and he’s short on fun at the moment. Nice lad. You’ll like him. Good sense of humour.’
She tried to smile. She’d met more than enough brave kids who made light of their situation with humour, and the worse it was, the funnier they could be. Till you caught them unawares and saw their true feelings. It wasn’t so funny then. ‘How long’s he got?’ she asked quietly, holding her breath for his answer.
Andrew shrugged. ‘Who knows? His heart’s enlarged, his body’s very weak now—the muscles are packing up faster than I’d have expected. He’s been in a wheelchair for five years already, so he’s not going to make old bones, but he’s still in full-time education, he’s as bright as a button and he’s amazingly gutsy. I just hope they can give him a while longer and make him more comfortable, but that all depends on the cardiac and pulmonary assessments—and first we have to sort this arm.’
She nodded slowly. ‘OK. I’ll arrange a bed for him. Do you want him in with the boys, or on his own?
‘Oh, in with the boys. Joel’s bored to death. They can entertain each other for the next few days. Right, I have to go, but I’ll be back later with the MDT—can I leave this with you?’
‘Yes, sure,’ she said, her eyes fixed on the X-ray plates, and he kissed her cheek and went out, leaving her standing there staring at the havoc wrought by this slow and insidious killer gene. A gene that was killing her cousin inch by inch.
A gene which, if she had inherited it from her mother’s side of the family, would make her a carrier…
CHAPTER EIGHT
CRAIG was admitted an hour later, and she’d put him opposite Joel so they could see each other.
It was no good putting them side by side, since Joel couldn’t turn his head with the halo splint, and as Craig was most likely to need nursing propped up in bed, it was the best way for them to be placed.
Luckily the boys’ bay was quiet now. Christopher and Jonathan, the twins who’d fallen out of the tree and broken their legs, had gone home before the weekend, and the other beds had post-op fractures and ligament repairs, comparatively minor injuries which had needed surgery but didn’t necessitate a long stay, so she was happy to shuffle them to make way for the boys who might well have longer to go.
Andrew was right—Craig was struggling. Every breath was a physical effort, every word took energy he didn’t have, but his eyes were bright and alert and he was open and friendly. ‘I’ve put you here,’ she told him. ‘This is Joel. I’ll let him tell you why he’s in here and what he’s done to himself. Mr Langham-Jones said you’d got a good sense of humour!’
Craig chuckled and raised his hand to Joel. ‘Hi, there. I’m Craig.’
‘What happened to you?’
‘I fell out of my wheelchair. It didn’t like the kerb. What about you?’
‘I fell through the roof of the conservatory.’
‘What, glass?’ Craig asked, looking suitably impressed.
‘No. The wooden panel by the house. It’s meant to be a fire escape, but it was rotten and I fell through it. Well, one leg did. The other one didn’t, so I swivelled round and went off the edge head first and broke my neck. I was supposed to be going home but I’ve got an infection where the screws go into my skull.’
‘Oh, gross!’ Craig said, pulling a face. Libby chuckled and handed him the tubes so he could insert the soft prongs into his nose and link himself up to the oxygen. He did it without even looking at them, an indication of how much he’d had to do with hospitals and oxygen over the past few years, and she had to fight the twin urges to hug him and run away.
She did neither, the soft voice behind her murmuring her name jerking her out of her turbulent thoughts.
‘Andrew!’ She looked up, distracted, her head miles away on the other side of the country at a funeral, meeting her seventeen-year-old cousin, Edward, for the first—and probably last—time.
His brow pleated into a frown. ‘Are you OK?’ he murmured softly, and she nodded.
She wasn’t. She was far from OK, she’d been slapped in the face by reality, forced to confront what her future might have been had she been born a boy. What the future might be for any potential son she bore.
‘I’m fine,’ she lied. ‘I’ll get the paperwork. When’s the MDT meeting?’
‘As soon as I tell them he’s here,’ he said quietly. ‘We’ve gone through the notes, they want to meet him. I was just popping up to say hi and put him in the picture. Could you page them?’
‘Sure, I’ll go and do it now,’ she said, and leaving the boy in Andrew’s capable hands, she retreated to the relative sanctuary of her office.
He followed her in there a few moments later, shutting the door and giving her an odd look. ‘Libby, is everything all right?’
‘It’s fine.’
‘No, it’s not. It’s not fine. There’s something the matter.’
‘Andrew, I’m fine,’ she insisted. ‘I’m just busy.’
Busy, and unable to find the words to tell him, to bring the truth out into the open and give voice to it, because by doing so she’d be facing up to it and admitting that there was a possibility that she was a carrier of DMD.
‘Good news. We can do Craig’s arm under GA tomorrow,’ he told her over the phone that night.
‘That’s great,’ she said, trying to sound cheerful. ‘So what’s the bad news?’
‘I’m tied up here and I won’t get to you. I’ve had another look at Craig’s X-rays and I want to go over the notes again, do a bit more research, and I’ll be really late, so I might as well kip here. I’ll see you here tomorrow.’
‘I take it you’re still at work, then?’
He gave a rusty chuckle. ‘Yes, I’m still at work. I’m sorry. I thought—’
‘What?’
He hesitated, then sighed. ‘Nothing. I’ll see you in the morning. Sleep well.’
‘You, too. Try not to be up all night.’
‘I won’t. Take care.’
She stared at the phone. Damn. She’d geared herself up to talk to him, decided to tell him when he got to her house. And now he wasn’t coming.
There was no way she could do it at work, so she’d have to tell him tomorrow night. Another twenty-four hours.
She went to bed, too troubled to sleep at first, but she was woken later by her phone. She struggled up on one elbow and picked it up, scraping the hair back out of her eyes with the other hand and peering at the clock. Two-thirty? ‘Hello?’ she murmured.
‘It’s me. I’m outside—can you let me in?’
Andrew. She slipped out of bed, ran down and opened the door, and he stepped inside and pulled her into his arms for a hug.
‘I thought you weren’t coming?’ she mumbled into his shirtfront, and he eased her away and looked down into her sleep-glazed eyes.
‘I wasn’t, but—I don’t know, there was something in your voice, and you keep telling me you’re all right, but I know you’re not. I know there’s something wrong, and I just couldn’t settle until I knew what it was.’
She turned her head away, but not before he saw the slight sheen of tears. ‘You’re right. I need to talk to you. There’s something you don�
�t know—something even I don’t know yet.’
His heart pounded. He had no idea what it was, but his imagination was running riot and it wasn’t coming up with anything good. ‘OK. Let’s go somewhere comfortable and talk about it.’
‘Bed?’ she suggested, and he nodded and shrugged off his jacket, hanging it over the end of the banisters as they went up the stairs to her room.
And as soon as they were settled in bed, with his arms around her cradling her against his shoulder, she carried on, ‘I went to a funeral just over a year ago, of a great-great-aunt. And I met a young man there—a cousin. He was in a wheelchair.’ She swallowed. ‘He looked a lot like Craig.’
He felt a cold chill run over him. ‘DMD?’ he said, tilting her chin so he could see into her eyes.
She nodded, and he shook his head slowly. No wonder she’d been looking a little strange today, as if things weren’t quite right with her world. Of all the cruel twists of fate, to have Craig on the ward. ‘You didn’t know about it?’
She shook her head. ‘No. I had no idea. It’s an X-linked recessive, so it doesn’t show up in girls, and I’ve only got one sister, and my mother’s an only child, and her mother was one of two girls. There’s no evidence of it on our side of the family.’
‘And this cousin?’
‘He’s on the other side, my great-aunt’s side. We had no idea. We don’t have any contact with them, really, because we’re spread out all over the place. It was a complete bolt from the blue.’
‘I’m sure. Oh, Libby, I’m so sorry,’ he murmured, aching for her, this woman who was so good with children, a woman just made to be a mother, and the implications this could have for her. ‘And you?’ he asked, holding his breath for the answer. ‘Are you a carrier?’
She shrugged, her face unhappy. ‘I don’t know. My sister Jenny and her husband were trying for another baby at the time, and they stopped immediately and went for genetic screening to find out, and discovered that she’s a carrier. Luckily their first child’s a girl, so they’re having her screened, but they won’t have any more.’
‘Why? They can, with IVF.’
‘I know, but apparently they just screen for sex rather than the gene, and implant female embryos, so you can still hand the gene on even if the carrier’s unaffected, and Jenny says she couldn’t do that. It’s just handing the dilemma on to the next generation and, anyway, IVF’s not exactly plain sailing, there’s no guarantee it will work and there’s still a chance of having a child with a disability because of the possibility of a damaged embryo. The embryo screening process isn’t without risk, and it strikes me it’s just swapping a known risk for an unknown one, and I’m not sure I’ll want to do that, either.’
‘You’re getting ahead of yourself,’ he pointed out gently. ‘You don’t even know yet if you are a carrier, do you? Are you waiting for results?’
She shook her head. ‘No. I saw my GP about getting screened, but because I wasn’t in a relationship and not seeking to become pregnant any time in the foreseeable future, there didn’t seem to be any hurry.’
He let his breath out on a long, quiet sigh and drew her closer into his arms, deeply saddened for her. ‘I’m so sorry. I had no idea you were going through all that.’
‘Of course you didn’t. Why should you? And I haven’t really been going through it, I’ve been avoiding it, because it wasn’t relevant and frankly I’d rather not know. Except now, seeing Craig today—well, I have to know, don’t I? I have to find out. I can’t just ignore it any longer. I can’t afford to take the risk of bringing a child into the world to suffer like that. And he’s so brave and so candid…’
Her voice broke, and he cradled her against his chest while she cried, not only for Craig, but for the uncertainty in her future, for the very real possibility that having children, at least naturally conceived children, might be denied her. It was something everyone took for granted, and he knew only too well how hard it was to come to terms with when it was taken away.
‘Are you all right?’
Craig nodded sleepily, the pre-med taking effect. ‘Yeah, I’m fine. Can’t breathe very well, but that’s par.’
She helped him shift, propped another pillow under his head and adjusted the flow of his oxygen. ‘Better?’
‘Yeah. Thanks.’
‘My pleasure. The arm’s a bit of a pain really, isn’t it?’ she added softly, and he gave her a tired smile.
‘Yes. I could have done without it, but if I get through the GA, at least it’ll prove I’m a good anaesthetic risk.’
She tipped her head on one side at his choice of words. ‘Good working knowledge, too much practical experience or doctor in the family?’ she asked, and he chuckled.
‘All the above. I thought I’d want to train as a doctor if I stayed alive that long, but it’s unlikely so I’ve adjusted my expectations. If they can straighten my scoliosis, or at least stop it getting worse, there’s more chance, but I still think it’s a long shot. Pity, really. I’d be good—lots of empathy!’
She laughed with him, touched by his straightforward acceptance of his condition, by the courage he showed in the face of an operation which, while routine in anyone else, could possibly cost him his life.
No. That was stretching it too far. Andrew wouldn’t operate under GA if the team didn’t feel it was feasible.
This time.
So what about next?
A shiver ran over her, and she was glad when the porter came to take him to Theatre. She walked up with him, not because his case meant more to her than any of the others but because of his courage, because despite it, she knew he had to be a little bit afraid.
‘I’ll see you later,’ she said as the anaesthetist started the drugs, and he winked at her, his eyes glazing as the anaesthetic took effect.
‘OK?’
Andrew was standing waiting, and she saw his eyes concerned above the mask.
‘Fine. He’s OK with it.’
His eyes studied hers for a second. They both knew he wasn’t asking about Craig, but about her, and she smiled and nodded assurance.
His eyes creased in a smile. ‘Good. We’ll see you in a bit. It shouldn’t take long. I’ll let you know.’
Craig was due back on the ward later that afternoon, after a lengthy period in Recovery, but he’d done well, according to Andrew, it had all gone according to plan, he’d coped well with the anaesthetic and he would be fine. Nevertheless, she’d be glad to see him back in his bed.
So would his mother, who’d made herself scarce when he was going up to Theatre so she didn’t embarrass him, but ever since had sat in silent vigil by his wheelchair, waiting for his return.
‘He’ll be back soon,’ Libby told her. She’d made them both a cup of tea at the end of her shift, and they were sitting drinking it while they waited.
‘It’s funny. I’ve known for years we were going to lose him, but this fracture has been a bit of an eye-opener. I mean, you expect him to die of cardiac problems or pneumonia, not a broken arm. And he could have done. If it had gone wrong—’
‘But it didn’t, and they wouldn’t have operated like that if they’d felt it would. They would have done it with a local anaesthetic, but it wouldn’t have been very nice for him.’
His mother laughed a little bitterly. ‘None of it’s very nice for him. We were really shocked when we learned what he’d got. There isn’t any of it in the family anywhere that we can trace. It’s just one of those things.’
‘It happens like that sometimes,’ she said. ‘A freaky gene—a bit of damage. Things go wrong spontaneously from time to time.’
‘I know. But why did it have to be my boy?’ she asked, and Libby could see her eyes were filled with a sadness that ran too deep for tears.
‘Change of plan,’ Andrew told her on Thursday evening when he arrived at her house armed with the makings of supper.
‘Change of what plan?’
‘The weekend,’ he said, buzzing her cheek with a
kiss and grinning cheerfully. ‘We’re going to London tomorrow night and we won’t be back till Sunday. Pack smart casual and something a bit dressier for going out for dinner—and bring a warm coat for walking by the river, and comfortable shoes for sightseeing.’
‘Sightseeing?’ she said, bemused, and he smiled.
‘Don’t tell me you’ve seen everything?’ he asked. ‘And even if you have, you haven’t seen it with me, so just do as you’re asked and go and pack while I get the supper.’
She felt a little fizzle of excitement, just at the thought of going away with him, but—London? It was so dreary in the winter, but of course with him it would be different. More fun. Everything was more fun with him. ‘I’ll have to get Amy or someone to feed the cat. I hope she can.’
‘So do I. I’m tired. I want to get away.’ He hesitated, frowning. ‘Unless you really don’t want to?’
‘No, I’d love to, of course I would,’ she said hastily, because he was tired, and he did need to get away. Away from his family, from the hospital, from all of it. And so did she. She desperately needed some downtime with him, and the idea of going away with him was suddenly wonderfully appealing.
‘It sounds lovely,’ she said with another smile, and ran upstairs to pack, thanking her lucky stars that she’d done the washing the night before and it was dry. She packed her best matching underwear, a nightdress and light dressing gown for the hotel, trousers, her little black dress, flat shoes, heels, pretty tops, and left out her decent black trousers and a pretty jumper for travelling down the next night.
‘Done,’ she said as she went back into the kitchen, and he smiled and held out his arms.
‘Good girl. Now come and give me a hug, and then you can help me make the supper.’
‘Make it?’ she said, leaning back and laughing up at him. ‘It’s pizza and salad!’
‘I told you not to expect too much of my culinary skills,’ he grinned, releasing her and swatting her on the bottom. ‘Come on, open the bag of salad and let’s eat. I’m starving and the pizza’s done.’
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