I watch the mother’s face mostly, details I hadn’t noticed before: the slope of her eyebrows, the clenching of her teeth, eyes rimmed with red. But it is Rhianna’s granddad who looks to be carrying the most grief. His face is unironed linen, folded in and crumpled over.
Rhianna is a talented singer, dancer and actor. She has been attending a local theatre arts school since she was two, and spends her spare time watching musicals with her granddad, who lives nearby. She regularly visits him after school and they rush through her homework in order to sit down to early Elvis films, or South Pacific, My Fair Lady, Mary Poppins. Her mum tells me that Rhianna’s bedroom at home is full of memorabilia that he’s given her, from his days ‘tapping the boards’: ticket stubs from shows he’s seen, old danceshoes tied together with their frayed laces, hanging from hooks on her wall; a top hat that he wore in panto one season in Bognor Regis; a framed certificate in stage lighting; the original umbrella – he tells her it was one of many – from Singin’ in the Rain.
Rhianna has a large wardrobe full of costumes from shows gone by, attended every single time by her granddad: glittery leotards that leave a layer of gold flecks on her carpet, a jade green mermaid dress, a white layered tutu. Her quilt has tiny ballerinas dancing across it, and next to her bed is her most prized possession: a tiny windup musical box, a dancing figure spinning on top, which Rhianna liked to wind up every morning as she woke: a ritual that became background noise to her parents.
It is the lack of the music box being wound up that first alerts her mum that something is wrong. The mornings are silent. There is none of the tinny tinkling that usually greets them, coming from Rhianna’s room. When they go in, they notice that she is still fast asleep, sleeping longer and yet more tired. They put it down to the number of times Rhianna seems to wake in the night to use the toilet.
‘Stop drinking so much milk before bed,’ her mum tells her.
But she is worried. Rhianna was always a tiny thing, but now her clothes are hanging off her.
One morning Rhianna begins to complain of tummy ache, feeling sick. Her granddad stays with her while her parents go to work. By the time her parents return, Rhianna is confused and doesn’t appear to recognise them. Everything goes through her mum’s mind. Rhianna is seven. Her room smells of nailvarnish remover. Did she take it from the bathroom and spill it? She may have inhaled fumes from painting her nails repeatedly. Or perhaps she’s being bullied at school? Recently she even seemed to have lost interest in her love of singing, acting and dancing. For such a bubbly, confident girl, she had become very quiet. They fear they will never wake to the sound of the music box again.
I think of my own daughter’s music box: the miniature ballerina that she delights in watching, her eyes wide, mesmerised.
Rhianna deteriorates even more, and by now her breathing is different, shallow, fast. The doctors in A&E work quickly, taking a history and blood tests.
‘She has diabetes,’ they tell her parents.
Something called ‘diabetic ketoacidosis’ (DKA). They transfer her to the Paediatric Intensive Care Unit, where Trisha and I meet Rhianna for the first time. Trisha is on a nurse orientation programme and arrived some months before from the Philippines. I am her mentor.
The transition between being a junior nurse and coached by senior staff, and becoming a mentor nurse and more experienced, is something I have barely noticed. It has crept up on me, though moving up nursing grades means taking responsibility for students and orientation programmes, and for nurses from other countries who have arrived in London following NHS recruitment drives in India, Europe or the Philippines. Mentoring a nurse from abroad is a different experience from mentoring a homegrown nurse. Most of the junior nurses from the Philippines that I’ve ever worked with were senior nursemanagers at home and have far more experience than I do. They smile anyway, when I tell them what they already know. We all understand that both nurses and doctors will learn good teamwork, not in a classroom, but by experiencing it; as Kant put it so well: ‘There can be no doubt that all our knowledge begins with experience.’
‘Diabetes is getting so common at home,’ Trisha tells me.
‘It’s getting more common everywhere,’ I say. ‘Type two anyway.’
Diabetes was first discovered in the 1550s bc, when ancient healers noticed that ants were attracted to the urine of patients who were emaciated and urinating frequently. It is estimated that 3.9 million people in the UK alone are sufferers, and this number is going up at an alarming rate. There are some interesting developments in the treatment of type2 diabetes, involving the venom from a giant lizard. A drug – exenatide – was approved for development in 2005. It is synthetic, although it is extracted from the Gila monster’s saliva. Rhianna, though, is suffering from the rarer, and far more acutely dangerous, type 1 diabetes.
Rhianna’s parents are distraught.
‘We missed it. How could we have missed it? She was drinking so much milk. So thirsty. Eating loads. And losing weight.’
Rhianna is the only patient under my care. Usually in PICU there is one nurse to one patient. Rhianna needs various treatments: insulin infusion, fluid resuscitation, potas sium, and careful monitoring, as the timings of the treatments themselves can cause fatal harm.
Her granddad doesn’t speak, but his eyes are full of pain and guilt. He shakes his head every so often and watches Rhianna’s quick breathing.
‘We are monitoring her very closely, her observations and bloods. Checking her blood levels. The way she is breathing is because she’s trying to blow off carbon dioxide, which is a good sign that she is fighting it.’
By the time a child with DKA decompensates, stops propping up physiology by keeping things like their blood pressure normal, they stop fighting and their chance of survival diminishes. Rhianna is compensating. Although it is terrifying for her granddad to watch, I am relieved to see her fast breathing. Her pH is the lowest I’ve ever seen. Acidbase balance is incredible; we are too acid or too alkaline close to death, and our body compensates to rectify it – our will to live. If the acid level is too great, we produce hydrogen ions to neutralise it, like sponges mopping up and absorbing a spillage. We can tell how sick a patient is, in the first instance, by how many sponges they have produced; how they perform, or not, on a cellular level – homeostasis. Human beings are so incredibly fragile, and we need our pH to stay within minuscule parameters: for example, our acid pH should be between 7.35 and 7.46. If a patient’s pH is 6.8, it is incompatible with human life. Eventually we stop making sponges – we decompensate. We only have so much fight in us.
By all accounts, Rhianna’s pH is incompatible with life; should it drop by a decimal point, then Rhianna will surely die. Her breathing is maintaining that decimal better than anything we can do using technology. A life support machine would probably kill her. It is similarly dangerous when treating patients who suffer from asthma. Dusan, the senior consultant, teaches some junior doctors in a miniteaching session, and I listen in: ‘The minute we intubate, there is a risk of bilateral pneumothorasis, subcutaneous emphysema, hyperinflation requiring a senior anaesthetist and early inter vention.’
I look at Tracy, who is standing next to me. ‘What does all that mean?’ I whisper.
She shrugs. ‘We can put air in, but can’t take it out.’
As with asthma, treating a child with DKA requires medi cine and expert knowledge, of course, but also faith in nature. We are getting used to seeing the patient first, holistically, before simply correcting the numbers. Medical treatment for DKA used to involve wading in to correct the numbers, giving fluid and insulin and bicarbonate, before we realised that this aggressive treatment was making children’s brains swell, hastening – if not causing – coma and death. DKA is now treated softly, slowly. We remember the dock leaf next to the stinging nettle. We let Rhianna breathe quickly, let her numbers look horrific, support nature as she stabilises. I stand guard against anyone who wants to intervene too much.
Trisha and I are working today in the bed space next to Tracy. Coming up to retirement age, Tracy has never wanted to move up the managerial or education nursing routes, instead choosing a lifetime of patient care, happy to stay at her pay grade. She has twenty years’ more intensivecare experience than our most senior consultant, Dusan, who is standing at the nurses’ station eating a croissant while looking at an Xray.
A new doctor is writing up a prescription. He wanders over to Tracy’s patient’s ventilator and begins fiddling with the pressures. He adjusts the controls for tidal volume, the venti lator alarms and the patient’s chest rises higher than before. Tracy moves quickly. First she slaps the doctor’s hand away; next she turns the dials back to exactly where she had the settings, then checks the patient’s breathing.
The newbie looks bewildered. ‘This patient’s CO2 is rising,’ he says.
‘I’m well aware of that.’ Tracy blocks the doctor from the ventilator controls with her body. She folds her arms. ‘I’m planning to extubate him later.’
‘We haven’t discussed that on ward round.’ The doctor looks confused. ‘There’s nothing planned, in his medical notes.’ Tracy laughs. She says nothing, but waves the doctor away with her hands.
He tries a different approach. ‘I’ll have to raise it with the consultant.’
‘You do that,’ she says. ‘He’s over there.’
In the UK it’s the doctors – but usually the nurses really – who manage the weaning off of a child from a life support machine. In America and Canada, registered respiratory therapists are the ones who are trained to do this. Tracy doesn’t have any specific qualifications to alter the ventilation. But, as with most nursing, I always judge skill based on who I would want to look after my family members. Tracy would be at the top.
The doctor humphs off and I watch him lean in to talk to Dusan, who pops the last of the croissant in his mouth. He puts his arm on the new doctor’s shoulder, shakes his head, looks over at Tracy, smiles. They are old friends and have shared more than most of us see in a lifetime. They trust each other.
Tracy shakes her head. ‘If the Hippocratic Oath is to “Do no harm”, then a nurses’ oath should be to make sure the doctors can fulfil their Hippocratic Oath.’ She laughs. ‘I think all junior doctors should spend a month as a nurse. We’d never have to clean a coffee cup left in the sink again, that’s for sure.’ Rhianna’s breathing becomes slower and deeper. She is developing Kussmaul breathing. Adolph Kussmaul was a nineteenthcentury doctor who identified deep, laboured gasping as a sign of coma and imminent death. It looks terrifying – what people describe as ‘air hunger’. Rhianna is barely conscious, biting the air in front of her. I think of the woman I first saw giving birth. How we are born, how we die. Those times when we are most human are when we appear least so. Rhianna has her eyes rolled back, biting the air, her body contracting with each strange breath.
‘Can she hear us?’
‘I’m sure she can,’ I lie.
But her mum can’t think of what to say.
Her granddad begins talking. ‘You need to get well soon,’ he says. ‘There is the end of year show coming up.’
‘Will she be better?’ her mum asks. ‘How long will she be in intensive care?’
Diabetic ketoacidosis can lead to cerebral oedema (swelling of the brain), coma and death. If cerebral oedema occurs in children, as it has in Rhianna, approximately 58 per cent of children recover completely, 21 per cent survive with a degree of brain damage, and 21 per cent die.
Rhianna’s mum keeps asking me questions about her recovery. Rhianna may not recover, but these are figures I keep to myself. I do not want to be dishonest, but I can see no benefit in telling her at this stage. I hope she will never need to know this. There is not much nursing I can do for Rhianna now. Only time will help, or not. But nursing means thinking ahead, even if the path in front is unthinkable. I move the furniture to the side of the room, check that the crash trolley is nearby; when her parents say they might pop out for a coffee, I suggest that Trisha makes them one instead, in case the doctors are coming to give an update. The room feels heavy, the air thick. The best nursing I can do is make sure the parents are with Rhianna if she dies, ensure they have spiritual support, that if the worst happens they get to say goodbye. The death of a child is unthinkable, but even more so a child dying alone.
‘Is there anyone I can call, who you’d like to be with you all at this time?’ I ask. ‘Any family – or people from your community; your church, if you have one?’
Rhianna’s brother visits. He’s eight, all wide eyed and slow moving. He keeps his hands in his pockets, I notice. Trisha notices, too. It turns out that she has a son the same age, whom she has left in the Philippines with her mother so that she can come and earn money to send home, working as a nurse in the NHS. It is not uncommon: all of the Filipino nurses I’ve ever worked with have left children behind, to come and work in the NHS.
Trisha squats down at his level. ‘Don’t worry about touching anything. If you wash your hands, you could touch her hand, while I tell you what all the tubes are for.’
She takes him to the sink and helps him. When they return he is less wide eyed.
Trisha laughs. ‘She certainly does look strange, I’m sure. But she is getting better now, thanks to the fantastic doctors. Maybe you could be a doctor when you grow up.’
‘I want to be a footballer.’
‘Of course,’ she says. She looks for a few seconds at the floor. ‘Like my son.’
Rhianna is not on the High Dependency Unit when I return for a day shift after a few days off. Her empty bed space is being cleaned for another patient. There are a few terrifying moments when you come back on shift and look for patients who were previously very sick, and you do not yet know whether or not the patient survived. Nurses never know, when they go home, if they will see the patient they have cared for the next morning. It is not something you can think about too much or the job would be impossible.
‘Gone to the ward,’ Dusan says. He is looking at an ECG on a monitor.
I’m glad Rhianna’s family never needed the awful statistics that I held in my head. I never see Rhianna again, or her granddad or parents, but I often think of her, waking up next to an old music box, and imagine how the sound of that music must feel to her family when they hear it. I like to imagine her at her granddad’s house, rushing through her homework in order to watch old films and dreaming of pop stardom. I am relieved that medical understanding of DKA has led to treatment that respects human physiology and compensatory mechanisms, and to caring for the whole person instead of simply trying to correct a set of numbers. Rhianna’s brain recovered without injury; she is now truly living.