‘It not ouchy.’
I wasn’t sure if she was looking for reassurance or reassuring me.
We were alone together in a room off the children’s ward. She sat almost upright in the bed, naked from the waist up but accessoried with several pieces of medical machinery to which she was tethered by wires and tubes. Her breathing was still rapid, laboured. She was still using her stomach muscles to expel the small amounts of air she was able to draw into her lungs with each breath. When she spoke, usually to tell me that she wanted to go home, her words came staccato, punctuated by weary inhalations. Pale and with heavy-lidded eyes, she was too tired to protest about the oxygen mask, the electrodes, the sats monitor. But at least she was talking – unthinkable just a few hours ago (or was it more than that, or less? Time takes on a strange character when the bio-survival circuit is running the show). Her oxygen saturation levels were now up in the high 90s and there had been no sign of wheeze in her lungs when they last listened to her chest. As she fell asleep, I allowed myself to relax a little and sent a message to my partner to say that our two-year-old daughter was responding well to the steroids and bronchodilators and that we were probably out of the woods. Then things got gnarly again.
While she slept, her lungs started to constrict again, increasing the amount of work she had to do to draw in and expel each breath. The doctors decided that it was time to try Optiflow – a machine which delivers warm, moist, oxygenated air at pressure through a nasal cannula – to try to help open up her lungs. It was disappointing to be moving in this direction but it wasn’t too alarming. She’d been put on Optiflow the last time she was admitted and, unlike last time, no one had mentioned putting her on a ventilator. We weren’t going to be returning home anytime soon, but at least the horror scenario was off the table. Or so I thought.
After another brief spell alone in the room, and another message to my partner to deliver the bad news, the door opened and the Optiflow machine was wheeled in by a single nurse. She had to insert the nasal cannula, attach it to my daughter’s face, and set up and start the Optiflow machine to deliver the right oxygen mix. This would be a tricky thing to do under ideal conditions and without the additional PPE the nurse was required to wear (because COVID) – I’m sure my daughter isn’t the only two year old to freak out when strangers try to stick things up her nose – but unfortunately, conditions were conspiring against us. Firstly, the Optiflow machine wouldn’t work when the first attempt was made to switch to it from the regular oxygen mask. Secondly, the room was equipped with only one oxygen line, so as the nurse scrambled to get the machine working, my daughter was left without oxygen support. Her sats started crashing. While the Optiflow machine was fiddled with, she was switched back to oxygen through the mask but by this point she had a nasal cannula in her nose, effectively blocking her nostrils. I could only stand by helplessly, repeating the same encouragements over and over again in what I hoped was a soothing tone. Eventually, with support from colleagues, the nurse got the machine working but by this point my daughter’s oxygen saturation levels were back down in the low eighties. Looking back, I think it might have been the sucker punch that put her on a path to intubation and ICU. It was only a matter of minutes later that the doctors were surrounding us, talking about how tired she was, how it was better to take action before it was too late. Only minutes more before her mother joined us for the anxious send off (it was clear they didn’t want us in the room for the procedure) and the excruciating wait for good news. My daughter would say no more words to me for three days.
We are in the midst of the second great COVID-19 fear blitz. The corporate media is awash with stories about how England’s hospitals are bursting at the seams with Covid patients. The Guardian reports that the number of people being ‘treated for Covid’ is over 30,000 or 74% higher than the April 2020 peak. But a quick investigation of the data definitions on the Government website from which these figures are pulled shows that they count everyone admitted to hospital who has tested positive for Sars-Cov-2 in the previous 14 days, or while in hospital. They might be receiving treatment for anything. You’d expect there to be far more people in hospital in winter than in spring. The numbers are never compared with their equivalents from recent years. As deaths near their peak, the numbers are in the headlines every day. Over the next few days they will start declining and over the next few weeks will return to near zero. The first day without any COVID-related deaths will not make the headlines. Neither will any of the sensationalist headlines published between now and then be tempered with the fact that, according to the ONS, the median age of persons whose death involved COVID-19 is 83 years. Life expectancy at birth in the UK is 81.26 years.
Meanwhile the Nightingale hospitals seem to have slipped down the memory hole. Along with the fact that there is a shortage of ICU beds in the NHS almost every year. Overall, the number of hospital beds in England is at its lowest level since (you guessed it) Thatcher came to power.
She first got sick back in September, with some virus or other. It was just a runny nose and a temperature to begin with but then a nasty cough developed which turned into wheezing, which progressively made her breathing more difficult. The GP was reluctant to allow to her to go to the surgery to begin with (because COVID) but after a consultation by video invited us in for a proper examination. After administering Salbutamol – a drug which relaxes the muscles of the airways, used to treat asthma – we were straight off to Accident and Emergency.
There she was given more Salbutamol and oxygen to help keep her blood-oxygen saturation level up in the normal range. The diagnosis: viral induced wheeze. Which is a bit like viral induced asthma, where the airways of the lungs get inflamed and narrow because of a viral infection, except that children often get it and then grow out of it so they don’t call it asthma until it’s been going on for a long time. The prognosis: a stay in the children’s respiratory ward while my daughter, who had responded well to the Salbutamol and oxygen, was weaned off them. When she was getting the bronchodilator only once every four hours and could sustain her blood oxygen levels on air alone she could be discharged with a Salbutamol inhaler to finish the weaning process at home. This took until the next morning.
Hospitals are bleak places to be at the best of times. Right now, they’re intensely depressing. I have no explanation for how people get well in them. The staff are, for the most part, lovely. It’s not their fault that they have to keep their faces permanently covered so that they’re never allowed to properly greet their patients and so that it’s hard to distinguish between them. It’s not their fault that they have to deprive ill people of the physical support of their loved ones (only one parent allowed on the ward and no visitors). It’s not their fault that they’re harried and stressed by new safety protocols and staff shortages owing to positive PCR tests. It’s not their fault that they have to administer pointless and intrusive swab tests to already distressed young children. That’s all because COVID.
Eradicating the virus is, of course, everyone’s top priority. In the NHS, it’s a priority that now comes before diagnosing and treating serious illness. It’s not the fault of the doctors and nurses who work there, who’ve been exposing themselves to worse pathogens than Sars-Cov-2 day in, day out for most of their working lives. They’re just following orders. Orders which, many of them know, are irrational, senseless and often harmful. But if you want to continue your career in healthcare in the UK, it would be unwise to publicly criticise the organisation that is, by a huge distance, the largest employer in the country.
The cough lingered after that discharge and we were using the blue inhaler almost every day. About two weeks later we got worried about her breathing overnight and took her into A&E again. This time we were quickly assured that her sats were fine, told that we should use the inhaler more if we felt it necessary and she was given a three-day course of antibiotics. That night she seemed to respond to the medicine and the cough went away. Over the next few weeks she had a few minor recurrences of the wheeze which we were able to treat at home with the inhaler. There didn’t seem to be any reason to take her in, given that she’d been discharged so rapidly the last time, and the GPs we spoke to over the phone agreed, but she didn’t quite seem herself. Normally an active, outdoor-loving, independent and cheerful toddler, she was now quick to tears, clingy and often wanted to return home almost as soon as we’d left. Then one weekend in the second half of November she got a cold which made her downright miserable. The cough returned, the wheeze followed and we were back in A&E within a couple of days of the runny nose first appearing.
She nearly ended up on a ventilator that time. That was, to a large degree, my fault. When the wheeze came it always worse at night and would improve just before dawn. Thinking it would be a terrible thing to take her out into the cold November night air only to be sent home immediately (or perhaps I was really thinking only of my own comfort) I decided to wait until morning to take her in. But I should have recognised how much she was struggling, how difficult her breathing had become, how much it was tiring her out. In the car, her lips turned blue. When we got to A&E, the team responsible for carrying out intubations was alerted immediately. As well as bronchodilators, my daughter was given steroids, magnesium and antibiotics intravenously. A chest x-ray showed pneumonia on both lungs, but most severely on the right. Thankfully she responded well to the medicines and the Optiflow machine. She was kept in children’s ward for a few days while the antibiotics did their thing and she was weaned off the Salbutamol. She was discharged with a week’s supply of antibiotics, as well as the same weaning schedule as last time.
We stuck rigidly to that schedule, even though it didn’t feel necessary. She seemed a picture of health, a happy return to her old, ebullient self. Even her childminder, a pillar of emotional and practical support, remarked on it. We all breathed a long sigh of relief. Then, about 24 hours after the bottle of antibiotics had been rinsed and put in the recycling bin, she started complaining of a runny nose which, unlike her four-year-old sister she always seems to find distressing. To my great shame, I uttered curses under my breath. How dare the universe inflict this poorly child upon me! By teatime the following day, the cough was back and the inhaler was out. I intended to watch her like a hawk for as long as it took – either until she recovered with the help of her inhaler or until we deemed it necessary to take her back to A&E. By this point we’d equipped ourselves with a little pulse oximeter that you clip on the finger. At around 2am she was wheezy, coughing a lot and had had several bouts of puffs from the blue inhaler. But her oxygen saturation was at normal levels and she was chatting with her sister who had been woken up (actually, they were engaged in a blazing row about who was making the most noise) and so I relaxed and fell asleep. Another terrible error. I awoke to the sound of her crying out in distress. I had no idea what time it was when I woke her mother to tell her we had to go to the hospital again. Our daughter was heaving through each breath and her sats were in the low eighties. When we got to A&E it was about 6am. Nine hours later a machine was breathing for her.
When the NHS was founded in 1948 the chief concern among doctors was that their ability to provide the best possible care for patients would be hampered by centralised power and top-down directives.
The doctor fears that if his status is changed from that of a personality dealing with another human personality as his patient, into that of a civil servant, who in the words of Doctor F. M. Walshe,R.A. Butler MP, House of Commons debate, 9th February 1948stands in a fugitive and impersonal relationship to individuals,then his whole position in practising the art of medicine will have been undermined.
It is hard to imagine a better example of centralised power undermining the art of medicine than when the recommendations of the Scientific Advisory Group for Emergencies, based on a hyperbolic computer model from Imperial College, were adopted by the UK government in March 2020. The National Health Service was effectively shutdown, almost overnight. According to a Daily Mail analysis in October, the restrictions put in place with the stated aim of ‘saving lives’ have resulted in huge increases in cancer, stroke and heart disease deaths due to delayed treatment, tens of thousands of cancelled surgical procedures for children, record waiting lists for routine operations, calls to child abuse helplines rocketing and a nationwide doubling of rates of depression and anxiety. The incidence of Vitamin D deficiency in the UK was flagged as ‘extremely concerning’ in 2019. It is becoming increasingly clear that Vitamin D, which is synthesised in the skin when it is exposed to sunlight, plays a significant role in the human immune system, particularly with respect to respiratory tract infections, raising the question of how many of the excess deaths being recorded in this flu season (and badged as COVID deaths by positive PCR test results) might have been caused or aggravated by government injuctions to ‘stay indoors’.
There is no paediatric ICU at our local hospital in Hackney, so shortly after being intubated our daughter was transported to the PICU at St Mary’s, Paddington, where the facilities were incredible. The ward was spotless, full of the latest technology and specialist medics. It had a separate accommodation block for parents. During our stay, during the second and third week in December, normally a busy time, it was nearly empty. The staff there were sure this was because of the restrictions on children mixing at school. I’m glad I didn’t quibble about all those thousands of children’s surgeries that had been cancelled. Me and my partner were both allowed into the unit at the same time and could switch in and out, which was a great relief after the trauma of the intubation and extubation procedures, which left our daughter groggy, disoriented and frightened.
She rallied quickly, largely thanks to the excellent care and attention she received. But the cause of her several bouts of respiratory distress puzzled the doctors and so four days later she was transferred to the Royal Brompton hospital, which specialises in heart and lung diseases. My partner’s account of the transfer and their week-long stay there (only one parent was allowed to accompany her) was grim. It was undoubtedly largely due to the new safety protocols but our daughter wasn’t examined by a doctor until the day after they arrived. She was supposed to be seen by a physiotherapist twice a day to work on loosening the mucus build up in her lungs but they came only sporadically. My partner was told that she should run, jump, climb etc (anything that gets her out of breath) as much as possible, but the play room was locked up for most of the day and they were confined to the ward. Suspecting that a foreign object had entered her airways, the surgeons insisted on a bronchoscopy (where a camera is inserted into the lung while the patient is under general anaesthetic) but the delayed results of a COVID swab meant that that procedure was postponed after she’d been fasting for a whole day. The bronchscopy didn’t turn up any foreign objects. When she was finally discharged into our care on December 20th and we drove away from the hospital, it felt like we’d achieved what Orpheus couldn’t and rescued her from the underworld.
I prayed multiple times that day my daughter was put on a ventilator. Or rather, I beseeched the source of all being to allow my daughter to carry on living. I attempted to bargain with it, which is silly, because how can you bargain with a non-entity? But rest assured, if I had been given a choice between sacrificing every 80 plus year old in the country or letting my daughter die, those old timers would be dust. I also attempted to bargain telepathically with my unconscious daughter (“get through this and I’ll never be cross with you again”). This almost certainly had nothing to do with the intubation going well, or with her steady recovery over the following days and weeks. It certainly hasn’t stopped me getting cross with her. But it did help break down the walls of the reality tunnel that I’ve been inhabiting for most of the year.
I had become deeply resentful of the NHS for the totemic role it has played in the deadly-pandemic narrative. If it the pushers of lockdown hadn’t been able to exploit the institution’s quasi-mythical status I’m not sure the people of Britain would’ve gone along with trashing the economy and surrendering their most basic human rights. But in the cult of COVID, the NHS has taken on the mantle of supreme perfection, of that which must be saved at all costs. With every Thursday-night clap, with every rainbow stuck up in a window, the notion that it was our duty to protect the NHS, and not the other way around, was reinforced. How could the doctors and nurses be going along with this? How could they not be up in arms about all the care – both routine and critical – that was being suspended under the auspices of a deadly pandemic that was steadfastly refusing to materialise?
Spending time in hospitals helped me realise that nothing else could have been expected. The NHS has been under attack, from Tories of both the blue and red variety, for over forty years. Neoliberal orthodoxy has insisted that the NHS runs with as low overheads as possible while adopting marketisation, targets and universal standards. This means that redundancy has been all but eliminated from the system so that it is only ever one bad flu season away from total collapse. Last year provided that bad flu season. From the inside of the NHS of course it looked like armageddon. A National Heath Service that was fit for purpose would plan for the contingency of a flu season that’s twice or three times as bad as in an average year. What we have seen in all those countries with high mortality rates is not an inadequately draconian response to the pandemic (Sweden and Belarus have definitively blown that hypothesis out of the water) but health systems held at the brink of collapse by four decades of neoliberal economic policy. Systems running with no additional capacity for dealing with events that deviate from the statistical average. Systems staffed by overworked, underpaid people constantly made to feel that their position is under threat and increasingly burdened by the additional bureaucracy that always accompanies what is called modernisation but what is actually managerialisation. And now those health systems have become the Trojan horse through which an even more intense form of neoliberalisation mounts its attack on what remains in the public domain. It may even be that the very concept of the public is now an anachronism, a relic of a bygone era. Where now is it possible to find a public space, a public building, a public service, even a public house, that can be accessed without subjecting oneself to onerous, invasive and humiliating rituals of obeisance to the state-corporate megamachine?
There are countless pathogens that could have triggered the illness that my daughter suffered from. She tested negative for Sars-Cov-2 several times but given the known deficiencies of the PCR test as a diagnostic tool, it can’t be definitively ruled out as one of the causes. But whatever virus it was, whether it was more or less deadly than Sars-Cov-2, I don’t want it wiped out. I don’t want it to receive the exceptional treatment that Sars-Cov-2 has been getting from governments around the world, or whole populations to be vaccinated against it. I do not want humans to attempt to exercise that level of minute control over nature. We’re no good at it.
The character of the debate is becoming ever more polarised. On one side are those who mistrust the cadre of public health experts and politicians whose doctrines purport to ensure the greater good, because they seem so similar to the cadre of economists and politicians whose doctrines have, over the last four decades, slowly but surely eroded their securities and freedoms to the point where any alternative seems preferable. On the other side are those who place their full faith in the scientific establishment, seemingly believing that Science ‘knows’ what is best for them.
Both extremes lead to disaster. Not every civil servant is out to crush your human dignity. Flee too hastily from the dogma of the orthodoxy and you might fall down a QAnon-esque rabbit hole. But at the same time, blind faith in the pronouncements of the high priests of Science can lead to the extreme neuroses exhibited by people who wear face masks while driving alone in their cars. Science does not know. Science guesses. To speak of what science ‘proves’ or of the science being ‘settled’ betrays a misunderstanding of the scientific method. Capital-s Science, the dogma of public officials may ‘know’ but small-s science is always questioning, always unsure, always qualified. The science on Sars-Cov-2 estimates that the mortality rate of those infected is in line with that of the seasonal flu. The Science tells us that COVID-19 is a grave threat to public health. The science produces no strong evidence in support of asymptomatic transmission, or in support of face masks and social distancing and lockdowns and school closures as inhibitors of the spread of aerosolised viruses. The Science tells us that it’s better to be safe than sorry. The science suggests that developing a vaccine for Sars-Cov-2 that is demonstrably effective is virtually impossible. The Science says ‘it’s done; roll up your sleeve’. In general, science progresses slowly, with consensus gradually emerging over the course of decades, while Science quickly publishes dogmatic assertions via secretive and unnaccountable agencies which are beholden to political and financial interests.
But I’m talking out of my reality tunnel again. This is all based on my arbitrary penchant for personal freedoms like those of speech, of expression, of movement and of association, as well as my conditioned reflex to resist curtailment of those freedoms as part of a mobilisation of all the resources of civilisation in a Quixotic crusade to stamp out a virus that is already everywhere (probably before 2020) and mutating at a rate that vaccine developers could never hope to keep up with. I always thought that before coming together to devote all our energies to the total elimination of even minor diseases and the endless extension of human life, it would be ethically imperative to first eliminate poverty, malnutrition, exploitation, needless pollution, warfare and systemic brutality. But perhaps I am a dinosaur. Perhaps all the slow, deliberate science on respiratory diseases that happened prior to 2020 was shoddy whereas the frenzied, headline-chasing, policy-enabling Science that has ridden the coat tails of the pandemic into public awareness is careful, thoroughgoing and not at all subject to confirmation bias. Perhaps what we are witnessing is a great leap forward in human progress which ushers in a new golden age. One where rich Westerners get to see their life expectancy at birth tick up by one more year, while billions suffer to help them achieve it. Though I suspect there are plenty of dinosaurs left to scupper the plans of the hyperneoliberal technosphere as it pursues its ultimate goal of a biology-free capitalist utopia.
Our daughter is well now. We’re still administering daily physio and puffs on both her reliever and preventer inhalers, as prescribed by the doctors at Royal Brompton, even though her chest seems completely clear. We’re still on tenterhooks every time she coughs and I’ve even caught myself being wary of letting her mix with other children in case she catches something. But on reflection, I know that that would be a silly strategy. At her age, she needs to come into contact with all the common viruses and bacteria to help make her immune system more robust. On top of which, I accept that there is a trade off to being human. Being human means being with the humans. Children who grow up feral, who never learn language, never gain access to the more recently evolved circuits of human consciousness. The more others we encounter, the more facets of our humanity have a chance at being expressed. For good or for ill. A human life is but a brief caesura between infinities of nothingness stretching away in either direction. Don’t waste it in lockdown.