by Susan Lewis
Vivi was also keen to receive regular updates on Jim Lynskey’s Save9Lives website, for it was almost ready, she was told by Jim and the designers, to go live.
However, most of her time was taken up by Jack, who was passing all the usual baby checks with flying colours, and who’d clearly inherited his father’s charm, for he had more fans in his little world than most could boast in a wider one. In fact everything was going perfectly, for the cardiac team were pleased with her progress – there had been no activity from the ICD since the early days following the birth, when her heart had stopped several times and had to be shocked back to life.
When the decision was taken to return her to the transplant list it caused as much hope as it did dread, for she was warned that should it happen she’d be unable to spend time with children under five for at least a year in order to lessen the risk of infection.
It was something they’d have to deal with when, if, the time ever came.
It was a sunny evening in late June when Josh returned from his rounds of the local farms, hot, tired and smelling richly of livestock, to find himself navigating through a rowdy outdoor tango class. Declining all offers to join in, he let Ellie out of the car and went into the farmhouse kitchen in search of Vivi, who was generally there at this time of day.
Surprised to find no one around, he glanced out of the open stable door that led to the garden, and the vision of his wife reclining on a chair with their son on a blanket beside her brought him to a stop. It was the most beautiful sight in the world for him, seeing them relaxing in a halo of sunshine, the blooming garden providing a frame of colour. Opening up his phone, he captured the image to add to the hundreds of others they’d already stored. After smiling down at the result, he looked out to the garden again and decided that the baby, lying on his back under a parasol planted in the grass, must be sleeping, and Vivi, one hand trailing close to her son, was staring into space, apparently miles away.
He’d have gone out to them then, were it not for the unexpected unease that suddenly knotted his insides. Something was wrong, he could feel it, sense it as it clawed its way into him. He felt a harsh flare of frustration and anger. She’d been doing so well, had almost fully regained her strength since the birth, and there had been no calls, or none that he knew of, from the clinic.
He didn’t need to be thinking the worst, he told himself sharply, there was no reason to …
Careful to hide his misgivings he went out to join her, and hearing him coming she turned to look up at him. She was wearing sunglasses and nasal specs attached to the oxygen supply close by, but when she tried to smile it didn’t quite happen.
‘What is it?’ he asked, wanting to drop down beside her, but staying upright as if holding back from her would somehow dilute or even dispel the bad news.
She swallowed hard as she said, ‘I’ve just heard that Jim has been taken into hospital.’ Her mouth trembled as sorrow welled up in her throat. ‘I keep thinking about him and how frightened he must be …’
Moving past the swamping relief that this wasn’t about her, at least not today, Josh felt a new surge of concern as he sat down beside her. ‘What happened?’ he asked softly, taking her hand.
Vivi said, ‘There’s a problem with his VAD. It’s stopped functioning properly.’
Knowing that was the biggest fear for anyone with a VAD, he said, ‘I’m guessing his mother called.’
She nodded. ‘She did, but I spoke to him a few minutes ago. He sounds fine, but I know he’s afraid. Terrified, more like; who wouldn’t be in his shoes?’
‘Where is he?’
‘Queen Elizabeth’s in Birmingham.’
‘But can they repair the device?’
‘He thinks it has to be a new one, which’ll mean more open-heart surgery.’
Feeling deeply for the lad, Josh said, ‘I’ll call him myself after I’ve showered.’
Her eyes came to his and after a moment he saw her move away from her fear for Jim, tucking it into a place where she would care and pray for him inwardly until his next ordeal was over. Managing a mischievous smile, she said, ‘Oh, it’s you who pongs. I thought it was your son.’
Enjoying the tease, he looked down at the baby and found he was watching them with his big navy eyes. Apparently realizing he now had his parents’ attention, he blew a happy little raspberry.
Laughing, Jack lifted him onto one shoulder, and held out a hand to pull Vivi to her feet. ‘I’ve been thinking,’ he said, as they went into the kitchen, bringing the oxygen supply with them, but he got no further as Jack grabbed his lower lip and tugged down hard. Groaning a protest, he prised open the little fist and promptly found his finger clamped between two hungry gums.
Enjoying the spectacle, Vivi said, ‘You were thinking?’
Deciding a chew on his fingers might be best after he’d showered, he popped the baby into his bouncy seat and was about to start revealing his thoughts again, when her mobile rang.
She clicked on without checking who it was, and her eyes danced as he threw up his hands in mock despair.
‘A honeymoon,’ he said, undeterred. ‘I think we should have a honeymoon.’
Clearly delighted by the suggestion she blew him a kiss, and said into the phone, ‘Sorry who did you say it is?’
As the woman at the other end introduced herself again, Vivi felt her mind starting to spin and her eyes flew in panic to Josh.
His own darkened, and seeing she was shaking he put a hand out to steady her. ‘What is it?’ he demanded urgently.
‘I see,’ Vivi murmured to the caller. ‘Yes, yes of course.’ She listened some more, still looking at Josh. Tears were filling her eyes now and her breath was short and ragged.
‘What is it?’ he repeated, making to take the phone. Dear God don’t let this be bad news about Jim.
She pulled away. ‘We’ll be there as soon as we can,’ she said, and ringing off she clasped her icy hands to his face.
‘Vivi, for heaven’s sake,’ he growled. ‘What the hell …’
‘It was the transplant coordinator,’ she whispered hoarsely. ‘They have a heart … They want me to get there as soon as I can.’
He stared at her, muted by shock. ‘To Queen Elizabeth’s?’
‘No, no, I’m not with them. I’m …’
Knowing full well who she was with, he pulled himself together and sent her to their room to collect the bag she kept packed in readiness for this. Meanwhile he alerted the local ambulance service, and went in search of his mother so she could take charge of the baby. He called Gina and Michelle, and tried the ambulance service again, needing to be sure they were on their way. There was such a small window between donation and transplant that they couldn’t afford to lose any time. It would take at least two hours to get to the hospital, and he had no idea right now where the heart was or when it had become available …
Thirty minutes later, deciding they couldn’t wait any longer for an ambulance, Josh drove them out of Deerwood and headed for the motorway. If he got pulled over for speeding he felt certain the police, once they realized the urgency, would put on their blue lights and escort them.
As they raced along the country lanes Vivi clung to the edges of her seat, knowing they were both, to some degree, still in shock. It wasn’t that they’d stopped hoping this would happen, they’d never be able to do that, but they had stopped thinking that every call might be the one they were waiting for.
And now it had come.
It was almost unbelievable, and yet it was real.
They were in good time, she assured herself. The drive should take no more than a couple of hours. The new heart could survive for up to six hours once it had been taken from the donor, and as far as they were aware that hadn’t happened yet, or perhaps it was under way.
She closed her eyes and tried to still her thoughts. They were spinning around her head in a crazy circus of dread and hope, collecting up everything she’d learned about transplants, the chances of sur
vival, the intricacy of the surgery, the chances of bleeds and infections, the immunosuppressant drugs that could cause cancer … Perhaps worse of all was the warning that she shouldn’t be around children under five for the first year, given how frequently they picked up and passed on infections. She couldn’t imagine being without Jack for all that time. It was starting to panic her. They hadn’t even considered how they’d manage it …
She felt Josh’s hand take hers, as though he sensed the commotion going on inside her. She clung to him tightly, as much to still herself as to remind them both that what lay ahead was necessary, vital and exactly what they’d hoped and prayed for. Provided the transplant was a success, it was going to make all the difference in the world to their lives. She’d be able, after time, to pick up her baby, play with him, run on the beach with him and make love to Josh as she never had before. More than that, she’d be able to watch her son grow up, be there for birthdays and sports days, to cheer him on and kiss him better. She’d be a part of his life the way a mother should be; the way she’d hardly dared allow herself to think of until now.
She took a call from her mother. They sobbed with relief and terror, laughed almost deliriously, and she felt glad to know that Gina and Gil were already on their way.
She called Jim, worried about how he’d take the news when his need right now was so much greater than hers. He sounded genuinely pleased for her, and guilt immediately flared through her conscience.
‘It won’t be the right match for me.’ He reminded her. ‘We have different blood types.’
This was true. Nevertheless …
‘Yours will be an inspirational story for the Save9Lives website,’ he told her, ‘so promise to be in touch as soon as you can.’
‘I will, you can count on it. And don’t forget to let Josh know how your surgery goes.’
With a smile in his voice he said, ‘You bet.’ Adding softly, ‘See you on the other side.’
The other side of two surgeries that were going to save their lives, albeit in different ways, and for her it would, please God, turn her back into a normal, healthy young woman, or as near to it as she would ever get now – a young woman who was a wife and a mother, and who had so very much to live for.
She found herself thinking about the family who’d just lost a loved one, and felt more guilt flood through her that she was benefiting from their loss.
She crossed her fingers so tightly they turned white, and closing her eyes she prayed silently, desperately, please let this surgery be a success. Please, please, please let me have this second chance.
They were almost halfway to the hospital when the transplant coordinator rang again.
‘Hi, Vivienne, it’s Ruth O’Donnell.’ The voice was soft and Irish-sounding, and Vivi felt a ludicrous surge of affection for her.
‘Hi,’ Vivi replied. ‘We’re about an hour away. We weren’t sure the ambulance was going to turn up, so my husband’s driving us.’
‘Vivi,’ Ruth said gently, ‘I’m really sorry to tell you this, but we’ve just heard from the donor team, and I’m afraid the family have decided that they don’t want to let their daughter’s heart go.’
Vivi reeled; the whole world seemed to tilt and sway, to come crashing to a terrible, juddering halt and then shatter into a thousand pieces. She couldn’t have heard that right, she just couldn’t. So much preparation, anticipation, the struggle to control her fear, the daring to let her hopes fly … She put out a hand to grasp Josh’s arm.
‘What is it?’ he asked worriedly.
Vivi swallowed hard and heard herself say, ‘It’s not going to happen. We … We can turn back.’
He glanced at her in disbelief, but she knew it would only take a moment for him to understand. This had always been a possibility, but it wasn’t one they’d even begun to prepare for.
His face was pinched and pale as he reduced speed and steered the car into the slow lane. ‘Is there something wrong with the heart?’ he asked, trying to understand.
‘The donor’s family don’t want to go through with it,’ she explained, sounding strangely calm when all she wanted to do was scream and cry in protest and despair and grief. To Ruth she said, ‘I take it the girl wasn’t a registered donor?’
‘No, she wasn’t,’ Ruth confirmed. ‘You know, I’m sure,’ she continued, ‘that whenever death occurs suddenly, mostly through accident, the organ donation centre is immediately alerted. There’s almost no time to lose, especially for a heart, so they, we, have to start preparing in the hope that the victim is either a registered donor, or their family will be willing to make a positive decision for them. I’m so sorry, Vivienne, that in this case it’s gone against us.’
Hearing the tears in Ruth O’Donnell’s voice Vivi almost tried to comfort her, but the words wouldn’t come, so she simply rang off and let her own tears slide unchecked down her cheeks.
She didn’t want to feel angry with the family, whom she’d never know. It wouldn’t do any good. It hadn’t been their intention to thwart or hurt anyone; their only thoughts would have been for themselves and the precious daughter they’d lost. Allowing her beautiful healthy organs to be taken and given away to strangers, people they’d never know and might not even like, was too much at this time.
Maybe that was what they thought, how they felt. Vivi had no idea. All she knew for certain was that she and Josh, and their family, were left to deal with the fact that there was a perfect heart out there for her, one that could transform their lives and help at least some of their dreams to come true.
But the girl wasn’t a registered donor, so they had no right to it.
All they could do now was leave the motorway at the next junction and return home.
CHAPTER TWENTY-FOUR
The only surprise for Vivi over the next few weeks was that it took her cardiac team so long to begin the conversations about implanting a Ventricular Assist Device. She was weakening by the day; she knew it, so they must surely be picking it up in her nightly monitorings. They’d also have registered the fact that she was getting more shocks from the ICD than usual, shocks that she wasn’t coming back from as quickly as she once had.
Knowing that her heart was frequently stopping frightened her far more than she was allowing anyone to see, although she was aware of how easily Josh could read her. She knew that it was frightening him too, but he was better at hiding it, at least from everyone else. Together they put on a valiant front, not allowing the others to know how serious things were becoming; there would be time enough for that when they couldn’t hide it any more. In the privacy of their bedroom, with Jack lying between them, they talked about the future in ways that often became too difficult to put into words, that made them both cry harsh, desperate tears and cling to one another as though their love alone had the power to change things.
Was time really running out? They kept trying to believe that it wasn’t, that they were only reacting to the shocking, wrenching disappointment of losing out on a heart. Having to turn back that day had been devastating, had made it almost impossible for them to believe the gods were ever going to be on their side. Vivi was determined not to dwell on the fact that the family had apparently regretted their decision twenty-four hours later. It had already been too late by then; she had to let it go. Instead she tried to focus her mind on the beautiful moments of each day, and how truly blessed she was to have Jack and Josh when only a year ago she’d had no hope of ever being a wife and mother.
Another heart would come along, she assured herself, assured Josh, and he often said the same. In the meantime, with a VAD she was going to survive much better than she was managing right now. She might not want to have a mechanical pump implanted inside her heart to make the blood flow through her veins and other organs, or a driveline as thick as a pencil coming out through her skin to connect with two brick-sized batteries and a slightly smaller computer device. She abhorred the thought of going about the place looking like a mobile ICU, worse still was having
to plug herself into the mains at night, but then she’d remind herself that if Jim Lynskey could live with it, so could she. She tried not to think about the fact that his surgery to replace the faulty VAD had turned out to be so complicated that it had gone on for over twelve hours and taken him far closer to the end than he’d ever been. This was something she’d have to worry about in the future, should her own device start to fail and need to be replaced. The point for now was that Jim was recovering, albeit slowly, and the alternative of not having the device wasn’t one any of them was going to explore.
Her cardiac team had made the decision anyway. She was going to be implanted with a VAD, so this was what all the discussions were about as she and Josh went back and forth to the hospital seeing one specialist after another, and more dedicated nurses than they could count. They were plied with all sorts of information, from possible surgical complications, to device function, right down to how much the VAD cost – seventy thousand pounds – and the fact that the NHS would cover it. Though she felt slightly awkward about that, she wasn’t going to refuse it. Instead, she was going to count herself fortunate that she was able to have one at all, because not everyone with a failing heart could.
Just, please God, don’t let her heart give up before they had a chance to give it the help it needed.
When the day came for her to check into the hospital Josh drove them along the now familiar route from home to the centre, going at a far less hectic pace than he had the first time they’d made the journey. Vivi couldn’t help recalling how much hope they’d had then, how it hadn’t even crossed their minds that a transplant wouldn’t happen, until they’d been told to stop and turn back. The same wouldn’t happen with a VAD. The inanimate, innocuous-looking pump made of metal and plastic was no doubt already at the centre waiting for her. It was a miraculous invention, designed to act as a bridge to transplant. A bridge to nowhere, was how someone had described it online, for once the VAD was implanted the chances of qualifying for a new heart all but disappeared.