Chapter Seventeen: The Motion to End Tobey’s Life
Richard surveyed the small conference room, one of the few still in use at the sprawling hospital. He fixed his scornful gaze on the tall, grey-suited, practitioner, whose wildly knotted hair clung to his scalp like a silvery woolly rug. He then peered ahead to glimpse an olive-skinned, pot-bellied, physician, who was surreptitiously picking his nose and paying little attention to the ream of notes which were spread out in front of him. And lastly, he cast his eye over to the right, where a clean-shaven, platinum-haired consultant was steadily taking sips from his cup as though it were a vermouth on ice.
Maybe he wished it was
And there were many others in the room all pretending not to notice him, looking at them.
At this moment Richard had their full and undivided attention; which was just the way he wanted it.
It was the third time that year that this particular group had assembled. The first time; was to discuss baby Tobey’s crippling condition. On that day, they had all agreed that the baby was born with a rare form of CMS, one the hospital had never encountered in all its history.
The second time they were called together was to discuss the introduction of palliative care for the patient. At the time, they held heated debates trying to find the best way to work with the baby’s parents, who were desperate for answers. Answers the hospital was finding increasingly difficult to provide.
And now today, Richard was pushing for another matter entirely. For him, it was time to carry out the inevitable.
Highly sensitive cases, such as the baby Tobey situation, always involved outsiders pouring into the hospital. They hungrily descended upon the premises like vultures to an open carcass; excruciatingly crunching through piles and piles of laborious guidelines and legal documentation for no reason, Richard perceived, other than to justify their asinine existence. Although, to be fair, it wasn’t so much the duty they had to do, which aggravated Richard so, but rather, the type of morons they sent out to do it.
Nevertheless, in terms of backing, Richard was highly confident he had the hospital’s full support. Paul Healey, the hospital’s administrator, was an insecure drunk. There wasn’t anything Paul could suggest, that Richard couldn’t overturn. And in time, it seemed the hapless man just gave up, preferring to make the doctor a worthy ally than a career-destroying foe. For Richard, Paul Healey proved to be the easiest person to get onside - on all matters...
Susan Graham, on the other hand, was a little harder to persuade. She was the matron or - clinical nurse - as they have been referred to recently. She was a very hard person to please. But it seemed, for reasons only known to herself, the time had finally come to put the baby out of his misery.
As far as Richard was concerned all those of importance to this case were in agreement. But now he had to rouse enough patience in himself to listen to these outsiders mull over and challenge his undeniable authority.
“For the fifth time,” Richard emphasized to the visitor on his left hand-side, “I am well aware of the European Convention of Human Rights. Nevertheless, we believe stopping further treatment would not be a breach of his right to life,” Richard continued. “In order for baby Tobey to exist, he will first need to be able to carry out some basic functions, wouldn’t you agree? Such as: coughing, reacting to stimuli and breathing, the last - and most crucial of which - he is unable to perform without assistance. Over the last year baby Tobey has repeatedly failed to exercise any one of these fundamental functions. And lest I add...” he impressed upon his audience, “over the last few months he has undergone a series of muscle biopsies and genetic testing - all of which have come up inconclusive.”
“What about the use of Prostigmin?” It was a brave doctor indeed to make this kind of assertion while Dr. Lawson was firmly putting forward his findings. However the visitor continued. “It’s not the first time it’s been proposed and we cannot deny it has been widely used to treat CMS patients. Albeit, not as young as baby Tobey but on the whole the results were quite positive.”
“Dr. Birhmani, have you been reading your notes?” Richard cut in. Some of the visitors shuffled in their seats at his marked abruptness, “As I said earlier, baby Tobey did not respond well to Prostigmin. As soon as we saw signs of distress we immediately discontinued use. We witnessed similar reactions with the application of Ephedrine and 34-DAP. Again, both trials had to be discontinued - and please!” He said, without the slightest hint of humility, “no more talk of subjecting the patient to a tracheotomy, as some of you have previously mentioned. I believe the unnecessary drilling of holes in the hope of facilitating breathing is, at best, an absurd fantasy, made to give the parents nothing but a false sense of hope, and worse, a profound insult to our profession!”
“An insult?” one of the specialists’ raised an eyebrow. “That’s a tad bit harsh don’t you think? We’re just having a discussion here Dr. Lawson. We’re just having a discussion.”
Richard exhaled and leaned back in his chair. “Look…” he implored feeling very much like the lawyer he so gratefully did not become. “…Our job is to prolong life, not to prolong death, and under the circumstances we are doing a bad job of both! Not that I care what the media have to say on this matter but our repeated failings are starting to be an embarrassment to the hospital. Deep down, I believe the baby’s parents are under no illusions of their son’s mortality. It is now up to us - the voice of medical reason - to stand firm and united on this matter. It is only then, his parents will be fully confident in their private convictions and agree for us to take the necessary steps.”
Everybody nodded. “And the necessary steps need no further introduction, I believe we all know what they are…” He looked around the office. He let the silence do the talking.
Not yet Richard. Not yet…
“As soon as possible, we will let the parents know of our intentions to take baby Tobey off the ventilator.” Nobody said anything, so he swiftly continued. “Once we have their full cooperation, we therefore request the motion for palliative sedation. We believe it’s the best course of action in this particular incident.”
He closed his folder. As usual, Dr. Richard Lawson had won his case. Twenty minutes later, the discussion would draw to a close. And fifteen minutes after that, Dr. Richard Lawson would fall head over heels in lust for an auburn-haired beauty he spied roaming the hospital’s hallways shortly after his meeting had ended.
Richard wasn’t one to collect phone numbers, but that didn’t stop him from staring at her. He watched as she gracefully flitted around the corridor until she eventually found herself a seat in the visitor’s canteen area…
For some reason, Lydia didn’t feel quite right about leaving the hospital. It wasn’t a sense of foreboding which had suddenly blighted her mood but more like the feeling that she had left something of significance behind.
Yes, as Christine quite rightly pointed out, it was the weekend. There was so much she could be doing with her time. But ever since their chance meeting she had silently made a promise to herself. She wanted to help Christine in any way she could – God knows the girl was going to need it! The world would think her crazy! Who would believe her? Did she even believe her? But for some reason the cynic in her had nothing to come back with. Christine was many things, Lydia thought, but crazy wasn’t one of them. However, she was, what she would call, a soft touch. The girl had loved too much, too soon, and was still none the wiser for it.
All that soppy emotion was still bubbling away underneath the surface, waiting for an opportune moment to come seeping out again. Lydia could see it from the way Christine held that hopelessly sick baby.
‘Oh Christine, what are you like?’
Babies. Hospitals. Bereavement. It was certainly not her idea of fun. Especially, grappling with such weighty matters on a Saturday night. But Lydia could not deny that there were just some things of true importance, and this situation just happened to be one of them.
Before she could talk herself out of it, she turned back around and headed towards the hospital’s main canteen. As soon as she found a seat, she texted Christine to let her know that she was there, waiting for her…
“The wheels on the bus go round and round, round and round, round and round,
The wheels on the bus go round and round all day long...”
The suction machine was indiscriminately harsh, or so it sounded to Christine as the appliance carried out its gruelling task. Christine sang the old nursery rhyme as sweetly as she could. She never faltered. Not once. Not even when it became too distressing to watch. It was clear to see that no one who was fully in charge of their capabilities would be able to withstand the apparatus’ violent intrusion. In spite of it all, baby Tobey remained silent. His small arms flopped up and down as the machine went to work.
“There! All done!” The nurse declared.
The two attendants began to connect baby Tobey back up to the ventilator.
“His doctor should be dropping by later this afternoon to take a blood sample,” the nurse smiled. “I see his mum has not returned. Do let her know about the doctor coming by just in case she has some questions to ask him... It’s always best to talk to the experts, whenever you can catch them that is.”
“I’ll pass on the message.” Christine wished they’d quickly hurry up and leave. She wanted to resume her talks with baby Tobey. But the nurse continued. “And just a quick reminder,” she peered down at her watch. “Weekend visiting hours are slightly shorter I’m afraid. Visiting times are from 2.30pm to 6.00pm. We’ll be sending out a reminder around quarter to...”
Christine rigidly smiled up at the nurse and nodded. She was now aware she didn’t have much time left either. “Okay. Thank you.”
Now please leave! She remained at baby Tobey’s side until the door was fully closed behind them. She then quickly pulled up a chair and began to gently stroke his back.
Just like before, she was unable to hear anything at first. She kept up with the strokes, humming a light tune as she went along. Then, ever so softly, she began to hear the scratchy but feeble sounds of him taking in breath. But that was all. It then suddenly occurred to her that the baby had, in fact, drifted off to sleep.
She sighed but remained seated at his side; stroking him until his mother later came to join them in the room.
“How’s he doing?” She whispered.
So absorbed in her own thoughts Christine didn’t realise how quickly the time had flown. She looked up at the clock. It was five minutes to six. “Oh my God - Is that the time?” She sprung up from her chair “I guess I should be leaving now - Ow!” her back groaned from the strain of crouching over the baby’s bed. “Kelly - I’m so sorry. I didn’t get much time with him. Not long after you left the nurse came in to give him his suction…And after that…I think...he’s fallen asleep, or so I believe…”
“That’s alright,” Kelly sighed. She gathered some items from the side table and placed them into her bag. “To be honest, I prefer it when he sleeps. At least then I know he’s at peace…”
The two women slowly walked towards the exit of the neonatal ward.
“However,” Christine continued, “Tobey did say he was in a lot of pain. He doesn’t like the drugs they’re giving him. And he absolutely abhors having his blood taken. It’s…” Christine didn’t finish her sentence, Kelly’s hands flew to her mouth. “I know! I know!” she cried in anguish. “I knew it – I could feel it! But what are we to do?” She said helplessly. “We don’t know what to do.”
Christine’s heart sank. The worst part of being a parent, she recalled, was dealing with these sporadic episodes of helplessness. There were times when you just couldn’t provide the assistance your child so desperately needs.
When one is faced with it for the first time; it is utterly devastating. When it happens often; it is absolutely heart-breaking. But when one has to live with it, day in and day out - pretty much like what the Daley’s were having to do, Christine couldn’t begin to fathom how they were holding up at this tumultuous time in their lives...
Say something positive
Christine swallowed. “He said he loves you both so very much. He said when you hold him he can physically feel the love you both have for him. It’s been such a huge comfort to him.” Christine watched Kelly’s tears flow down her dry red cheeks. She carried on talking. “Just before the suction began I asked him if he would like me to sing to him. He said yes. He wanted me to sing: ‘The wheels on the bus go round and round,’ he said you sing it to him; it’s his favourite tune.”
“Yes that’s right.” Kelly said bursting into a smile. “That was the song I was singing to him when I saw him blink. Oh my son! You really spoke to my son…”
Christine had already decided not to tell Kelly about the other matter. The one about there being; ‘something wrong at the hospital’ She didn’t want to worry her. Besides, if the Daley’s allowed it, she would come back again. At least to find out what Tobey meant when he said; ‘Someone is doing something they shouldn’t…’ Christine didn’t like the sounds of that. Come to think about it, she didn’t like the sounds of most things but when had that ever stopped things from happening…
Luckily, Christine quickly checked her phone before leaving the hospital. She saw Lydia’s message and smiled.
It took her longer than she anticipated to find Lydia’s exact whereabouts. It turned out the hospital had several canteens and refectories at the general public’s disposal.
They were sat down having tea and sandwiches when Lydia said. “Now Christine. Don’t laugh at me. But last night I had a very strange dream. Do you think you’ll be able to explain it to me?” She didn’t wait for Christine to answer before launching right into it. “I was looking up at a random billboard when I suddenly heard a voice from behind me. Now…this is the weird part…According to the voice, I wasn’t pushing myself as hard as I should be. It said that I should try harder. I turned around. There was a man standing there. He was non-descript. Honestly, I couldn’t describe him to you. It was just a man…Only…I’m quite certain I have never seen him before in my life.” She paused, “Well at least…I don’t think I have. Anyway, he continued talking to me. He was still saying something about me not doing what I wanted, or should be doing, or supposed to be doing…I can’t quite remember what exactly. However, I do remember not feeling afraid. In fact, I was quite relaxed. He was far from menacing - if you catch my meaning…It was just…very weird…A really bizarre dream.”
She shook her head, “What do you make of it?” She said turning to Christine.
“Well, Lydia, that pretty much sounds like a dream to me.” Christine answered. She casually shrugged, she was trying her hardest not to laugh.
Lydia was sat with her mouth slightly opened, waiting expectantly for Christine’s reply. “Oh. So that’s it?” she blurted after a moment, seeing the humour in Christine’s eyes. “That’s it? Oh thanks a bunch!” She laughed
“What do you want me to say?” Christine said joining in with her laughter, “I’m not a psychic, Lydia, or a soothsayer or a mind reader or whatever the papers are calling me these days! Who knows what I am?” She exclaimed. They both softly chuckled at the absurdity of it all.
“That’s true,” Lydia agreed after a time. “What was I thinking?” she looked down with a lingering smile but then looked up solemnly at Christine. “Actually…There’s something I haven’t told you.” Christine immediately noted the change in her friend. She waited for Lydia to continue. “I didn’t get around to telling you this before but…I’m actually related to someone…quite famous....”
“Famous?” Christine didn’t hide her puzzlement.
“Yes. My sister is Stephanie Downes…” She waited for this information to sink in.
“Stephanie Downes, Stephanie Downes?” Christine repeated at least to ascertain that Lydia wasn’t mistaken and was indeed referring to: ’The Stephanie Downes’; ‘A’-list celebrity, humanitarian crusader, wife of Oscar-winning director - Charles Lintz - ‘Stephanie Downes’
Before Lydia had finished nodding Christine’s eyes widened as the realization hit her.
But of course! She wasn’t seeing Lydia for the first time she grasped. She’d seen a face uncannily similar to Lydia’s before. Beaming from the TV screens; splashed across the front pages of magazines, talking in interviews, accepting awards…
“Oh my God!” Christine said out loud, “She’s your sister!”
“I know. That’s what I said.” Lydia smiled back.
Christine looked at Lydia with amazement and bemusement. “W-what? Why didn’t you tell me this before?”
“Oh, I don’t know!” Lydia said emphatically. “I swear! It sounds silly but I just forgot to mention it. I guess there were more important things going on.” She waved her free hand about. They were both smiling at each other now.
Well it wasn’t entirely implausible Christine accepted. She did have other matters to contend with. But this recent bit of news was still quite out there to her, and she thought she knew a thing or two about ‘out there’
“Wow! So you have a famous sibling…”
Lydia nodded. “I do indeed.” She gathered the tangerine peelings which were scattered on the table and placed them neatly onto her empty tea-cup saucer. “Although,” she further added, “she is, in fact, my older sister and ‘Stephanie Downes’ is her stage name. Her real name is Sophia but she actually prefers to be called Stephanie now. She’s also four years older than me - but don’t let that get out!” she quickly laughed. “To be honest, it’s not that big a deal really. Although, in my opinion, if you think being a celebrity is hard enough, try being a sibling to one.” She playfully stuck out her tongue as she said this. “In the past, whenever people found out who my sister was they’d suddenly change, you know, act a little differently around me. And sometimes they would become a little bit too enthusiastic - for want of a better word,” she said dryly. “And, god forbid my sister does anything remotely human like end a relationship or put on a few pounds, that’s when the act of snooping really drives up a gear and friends - or people I believed to be friends - start seeking answers from me. Whenever that happens it can be quite annoying but I guess its par for the course. Don’t get me wrong! I have no qualms about publicizing my sister’s crazy antics, I wouldn’t be a true baby sister if I didn’t,” she declared flashing her little girl grin. “But as you might find with many things, the truth can so quickly become a lie. And when that happens it’s not only unfair, it can also be quite dangerous too.” Lydia shrugged. She looked down at the table and tutted, “So I guess I’ve only told a few people, and I suppose everyone else just figures it out for themselves. In any case it’s no big deal. That’s my sister’s life. She happily signed up for it, and is - on the whole - very proud of the life she leads, as we all are of her.” Lydia looked to Christine. “You are aware my sister is expecting right? It’s all the bloody tabloids talk about at the moment.” Her eyes gleamed then she suddenly ‘ahhhed’ as though she was having a Eureka moment.
Christine nodded and smiled at the obvious parallels. “Yes. Your sister’s pregnancy. I do believe I read that somewhere,” she smiled giving Lydia a sideward glance. “I guess you’ll be wanting me to have a chat with your sister’s baby as soon as it arrives. You know, probably ask if he or she had a comfortable journey? And how do they take their milk? That kind of thing.”
Their wayward laughter drew disapproving looks from a family seated nearby.
“I don’t think that’ll be necessary thank you very much!” Lydia giggled, wiping her eyes. “Oh why do I always cry when I laugh? I look pathetic.”
Christine was so glad Lydia had stayed behind. Seeing baby Tobey earlier; lying lifeless in his little bed shook her more than she let on. It had brought back dark memories of her own son; memories of him not responding to her when she gently lifted him out of his cot…
Right now, she was feeling a little uplifted. So much so, she almost forgot what she wanted to share with Lydia. “Lydia - the baby told me something!” All traces of humour had left Christine’s face. “Just before he had his suction he said there was something wrong at the hospital. Something about babies disappearing…” She paused. “I don’t know but I get the feeling he was very frightened…”
“Babies? Disappearing?” Lydia pulled a face. “That doesn’t sound too good.”
“I know,” Christine frowned. “Kelly said I could come back again to speak to him. I think I will.”
Knowing a bit about Christine’s past, Lydia was a little wary. “Are you sure you’re up for this?”
“Yes…It is a bit…difficult…” Christine mumbled, noting Lydia’s concern. “But if there is something wrong I guess here is where I can actually be of help.”
Although it was getting dark outside the two women had firmly ensconced themselves in the canteens’ seating area. They were drinking beverages and chatting like old friends do and occasionally indulging in the odd bit of celebrity gossip.
“It’s not gossip Christine if one’s own sister offers clarification on matters.” Lydia said guffawing at her friend’s gaping expression. “Yes. That is what really happens behind closed doors. And that my dear is how it has always been…”