The Knife's Edge

by Stephen Westaby

  When I found her again in the nurses’ changing room, Julie was gently sliding into the abyss. For a young woman in her twenties, this incident felt like a death sentence. In 1987 no one could put a figure on the risk of contracting full-blown AIDS from a needle-stick injury. What we did know was that it would be quite some time – months or years – before she would know whether she was safe or not. In the interim, everyone would treat her like a leper. The no-touch technique. No one would share her towel, let alone kiss or make love with her, and I felt responsible for all that. It had been my patient. It had been me who’d asked her to scrub for the case. Worst of all, I’d put that instrument down with the fucking needle pointing upwards. If only we could have wound the clock back.

  I didn’t want the poor girl to go back to her room and have no one to talk to. She needed a drink and so did I. The only place to find illicit alcohol was in the doctors’ compound, so I resolved to smuggle Julie back to my apartment after dark. When I explained to her that she needed AZT but there was none in Saudi Arabia, she just curled up into a ball and said nothing. I knew the cardiac surgeons whom she worked with at St Vincent’s Hospital in Sydney and I resolved to call them on the way to the airport. They would take care of her. We would organise her ticket, so all Julie needed to do was pack her bags. Would she ever return to Saudi Arabia with the prospect of HIV infection hanging over her like the Sword of Damocles? I doubted it. The poor kid came to work that morning full of life. One wobble on her stool and she faced a lifetime of uncertainty.

  The newly published US recommendations advised serial HIV testing for six months after the initial four weeks of antiviral drugs. And ‘counselling’, whatever that meant. She would either be HIV positive or negative, and in the meantime the waiting to find out would dominate her every waking hour. With that, Julie, the bottle and I settled down for the night, and I did what I always did for my patients. I suggested that the risks were very low and that things would seem better in the morning. What’s more, she was going home in a business-class seat. Scant consolation, I thought to myself, and if she was caught sharing my room we would both end up in jail – or worse.

  I tried to keep in touch with Julie over the following years. The antiviral therapy in Sydney made her dreadfully sick for weeks on end, and her happy life and cheerful disposition were replaced by self-imposed isolation and depression. She never wanted to see the inside of an operating theatre again. She drank too much, avoided relationships and apparently had to resort to shoplifting when the money ran out. Although she never registered HIV positive, the trauma of that needle-stick and the fear of AIDS almost destroyed her. Almost, but not quite.

  Ten years later I met her unexpectedly at a conference in Melbourne, where she was a heart failure nurse. She had seen my name on the programme posted in the hospital and was keen to let me know that she had a life again. It was an emotionally charged reunion because I had never forgiven myself for that innocent mistake with a viciously sharp needle. We found a fine bottle of blood red Australian merlot and she laughed a lot when I told her about the ‘stab nurse’ in Oxford. This was a far cry from the abominable Jeddah juice and that dreadful night with the bleeding hand.

  Philippe died from AIDS just months after his operation. Of the many haemophiliacs exposed to HIV through blood products in the UK, 1,056 became HIV positive, 31 developed full-blown AIDS and 23 died. Had the blood-products industry and gay groups not refuted the evidence accumulated by the US Centers for Disease Control in 1982, much of this could have been prevented. I went on to insist that all our cardiac surgery patients in Oxford be tested for hepatitis and HIV as a matter of routine. This suggestion soon hit the buffers. Irrespective of the myriad of blood tests we did as a matter of routine, those for dangerous viruses could only be performed with the patient’s explicit consent. Why? Because the potentially life-threatening diseases carried by some were associated with their personal habits, which – it was held – were no one else’s business. My operating theatre staff seemingly possessed no rights.

  I had no intention of being discriminatory or rejecting seropositive patients, but I wanted those in the front line like Julie to have the opportunity to protect themselves or indeed make their own choice as to whether they were willing to participate in the surgery. In my view, it was fair to test everyone whose blood we would pass between us, so I stuck to my guns. In my view, all patients benefited from their surgical team being protected, so if the system was not prepared to start routine testing I was not going to consent to annual hepatitis testing either. This precipitated a row with the medical director about hospital policy and fucking regulations. Anything but the welfare of my team.

  From the safety of their desks, the General Medical Council declared that ‘serology testing solely for the benefit of the healthcare worker is unlawful.’ Yet if our nurses or perfusionists, who wallow in blood daily, inadvertently contracted hepatitis or AIDS from an untested seropositive individual they could pass it on to others – their spouse, their children or even other patients. It made no sense whatever not to know what we were up against. So I threatened a blanket ban on all categories of patient who were deemed high risk for positive serology, claiming that it was in the interest of the wider public. We all know what that meant, but needless to say this was a hollow threat. It was like a debate at the Oxford Union. Meanwhile, panic about HIV was spreading. Those in daily contact with blood, sharp instruments and complex equipment simply had to be protected.

  Over the years I went on to operate on a number of HIV-positive patients without using spacesuits or double-gloving. I felt it important for me to keep everything as routine as possible, because it was those in a state of nervous excitement who generally had the accidents. The World Health Organization estimated that 66,000 hepatitis B, 16,000 hepatitis C and 1,000 HIV infections were caused in medical or nursing staff by needle-stick injuries in the year 2000 alone. While 10 per cent of hepatitis B-positive needle-sticks eventually infected the recipient, the risk for hepatitis C was less than 2 per cent and for HIV it was just 0.3 per cent. But blood from terminally ill AIDS patients was substantially more infective. So Julie was lucky. Antiretroviral therapy and prognosis for AIDS have improved greatly during the last twenty-five years, yet the process of needle-stick prophylaxis remains onerous, uncertain and unpleasant for those involved. I eventually retired ‘clean’, despite hundreds of needle-sticks throughout my career. ‘Stab nurse Ayrin’ battles on as senior sister.

  It was not until October 2018 that an official inquiry was opened into what the press deemed the worst-ever NHS treatment disaster. The proceedings began with testimonies from people who’d been infected with HIV and hepatitis. In a video played to the courtroom, one man described how he felt that he had lost his whole life after finding out at the age of forty-three that he’d been infected with hepatitis C as a child, when he was given an injection of infected blood products after a swollen knee was mistakenly diagnosed as haemophilia. One woman stated that she’d caught AIDS through her deceased husband, who was a haemophiliac. ‘We were silenced and we kept quiet,’ she said. As many as 30,000 patients who had received straightforward blood transfusions were also infected. Whole blood and blood products came from 100,000 paid donors in the United States, many of whom were prison inmates or from high-risk groups.

  Why did this happen? Because the NHS was struggling to keep up with demand for treatment – a resources issue, as usual. As a result, around 5,000 patients with haemophilia and other bleeding disorders were infected over twenty years; half that number subsequently died. The UK government’s legal team admitted that ‘it was clear things happened that should not have happened.’ Speaking on behalf of the Department of Health and Social Care in England, Eleanor Gray QC said, ‘We are sorry. This happened when it should not have done.’ Tell that to Philippe’s mother, to Julie in Australia, or to me and the thousands of other NHS staff who remained at risk of contamination because the whole scanda
l was covered up.

  8

  pressure

  From a surgical perspective, small children with congenital defects in their tiny hearts are far more technically challenging to operate on than grown-ups, so our cerebral cortex and brain stem to fingertips axis has to be finely honed. Our empathy button also needs to be in the ‘off’ position – if only temporarily. We are all subject to transmitted anxiety, whereby someone else’s fears are transmitted to our own mind. Body language, wobbly words and overt displays of emotion all figure in this process, no more so than when we talk to parents about operating on their child.

  To maintain objectivity, the paediatric surgeon’s psyche requires an invisible brick wall to deflect the misery, terror and panic vibes. This shouldn’t be interpreted as callous or psychopathic, because it’s not. Quite simply, the ability to resist the pressure of these emotions emanating from others is an acquired defence mechanism without which we couldn’t do the job. Operating on other people’s children is a peculiar responsibility.

  According to new research from Cambridge University, people acquire empathy through their upbringing and environment. What the Cambridge psychologists did was to analyse the genetics of 46,000 people who were asked to respond to a questionnaire designed to demonstrate empathy levels. They found that just 10 per cent of the variation between people’s compassion and their ability to respond appropriately to the feelings of others was genetically based. Women are more empathetic than men. Given that empathy is an acquired trait, it broadly explains how doctors and soldiers learn to avoid it when they have to. I had a hugely empathetic mother, but when it came to children’s hearts I learned to dispel the influence of her DNA. Clearly it is not a static phenomenon. When the pressure abates, empathy can return. And empathy at work is not the same as empathy at home. I was constantly concerned for my own children, particularly when my son Mark became a competitive rugby player, then drove as stupidly fast as I did.

  As you might imagine, there was vastly more to establishing a children’s heart surgery programme in Oxford than merely being able to perform the operations. My experience of congenital heart surgery with Kirklin and Pacifico, then a stint at Great Ormond Street Hospital in London, gave me the confidence to consider the prospect. Nothing gave me as much pleasure as watching sickly blue babies with terrified parents leave the hospital pink with happy families – mums, dads, grandparents, siblings all relieved of that crashing weight on their shoulders and never forgetting what their surgeon did for them. This was my motivation.

  The commitment was huge in terms of time, energy and emotional commitment, but it gave me intense satisfaction. I had superbly dedicated children’s cardiologists, anaesthetists and intensive care doctors behind me to relieve the pressure. Then, from a selfish standpoint, paediatric cardiac surgery lent Oxford an element of prestige that the rival Cambridge centre at Papworth lacked, something to offset their first-rate transplant programme.

  Because we started from nothing, we remained the smallest paediatric cardiac centre in the UK, but goodwill and massive charitable donations built us the fine Oxford Children’s Hospital. We had world-class obstetrics, neonatal intensive care and other paediatric surgical specialities alongside, everything we needed to provide the critical infrastructure for safe heart surgery.

  Age eventually mellowed my perspective on professional life. I was recently preparing to give a talk in flooded Houston the week after the devastating 2017 hurricane and long after I had stopped operating on children. Sifting through my secretary Sue’s print-out of the slides I found an envelope that she hadn’t mentioned, one that had travelled with me all the way to the Texas Heart Institute. The letter within read:

  Dear Dr Westaby,

  I hope you are well! My name is Cara and you operated when I was 10. I must admit it is only in the last couple of years that I have started to understand how difficult and pioneering the Ross procedure was and how lucky I am to have recovered the way I have. I have recently completed my Batchelor of Psychology degree. At my last appointment with my cardiologist, he told me that I am healthy enough to have children and am unlikely to need more surgery in the foreseeable future. I understand that this result was very improbable at the time of my first and second operations and would like to thank you most sincerely from the bottom of my heart for giving me the opportunity to experience this life. I am visiting the UK with my partner showing him the important places from my childhood. As you and the John Radcliffe are top of that list, I felt it important to pop by.

  Lots of love,

  Cara xxxx

  But I wasn’t in the hospital at the time and so I never got to meet grown-up Cara. Sue had taken the letter and slipped it in with my papers for the trip. There was no contact address, no way for me to tell Cara how much I appreciated her message. Some time ago I wouldn’t have given it a second thought. Just another thank you letter, another day, another complex reoperation in a child. I didn’t put myself in her position, nor feel concern for her petrified parents who probably thought that this third epic could be her last. Did I even meet them? Or did I fly in the night before and do the plumbing in the morning? An anonymous technical exercise was what I preferred in those days. Others did the talking. Now things were different and I was bitterly disappointed to miss her. I felt strangely protective about her prospects for motherhood and sincerely hoped that her own child wouldn’t inherit the same problems that she had suffered.

  Cara had been born with left ventricular outflow obstruction and an aortic valve that was far too small. As a result, her heart muscle was dangerously thick and it had to work far too hard to force blood around her tiny body. Mum soon noticed that something was wrong. Breast feeding was a problem, not a pleasure. It began enthusiastically enough, but disintegrated into breathlessness and wailing. Cara had ‘failure to thrive’, as the doctors put it. She was an emaciated, miserable baby, not plump and cheerful as she should have been.

  When someone took the trouble to listen to her heaving chest there was an obvious murmur, a harsh sound behind the breast-bone as the powerful little ventricle squeezed blood through a pinhole. With just the stethoscope, her lady GP couldn’t know what the diagnosis was, probably a small hole in the heart that shouldn’t be there. Unfortunately, that was not the case. The hole should have been there, but much larger and with a three-cusp aortic valve in it. So skinny Cara was a hospital case rather than a baby you could pat on the head and patronise the mother by saying that it will all get better. It wouldn’t. If left alone, this would soon have become a fatal problem.

  Cara was referred as an emergency by my enormously talented paediatric cardiology colleague Neil Wilson. Using an echo probe, he’d made the diagnosis in five minutes – critical aortic stenosis and borderline hypoplastic left heart syndrome. Put simply, a tight valve with a left ventricle that was too small and grossly thickened. As a first option, Wilson wanted me to open up the stiff, thickened valve, what we call an aortic valvotomy. This should improve the heart failure symptoms and enable the left ventricle to grow.

  So I took little Cara to the operating theatre the same day, where her diminutive, pale body looked lost on the table-top expanse of shiny black vinyl. We covered her with blue linen drapes so only the breast-bone remained visible through the adherent plastic sheet. Beneath, those skinny ribs heaved up and down in time with the ventilator. There was little fat between skin and breast-bone, even less than at birth. My blade sliced through the layers in one stroke and sharp scissors bisected the length of the breast-bone with little resistance, and no need for the saw. The electrocautery singed the oozing bone marrow, and in went the smallest metal retractor.

  In babies, the fleshy yellow thymus gland covers much of the front of the pericardial sac. We removed it, cut through the glistening grey membrane, and there was the struggling heart. Cutting into the pericardium of a baby is like opening a surprise birthday present. We can anticipate what we’re going to f
ind from the echocardiogram but it doesn’t spoil the moment, much like entering the Woodstock Gate into Blenheim Palace near my home. I’ve done it so often, but each time the impact is breathtaking. Every baby’s heart is different and unique in some way, never a disappointment but often intimidating; such were Cara’s diminutive aorta and left ventricle, as underdeveloped as the echo had suggested. The aorta would only accept the smallest perfusion cannula for the bypass circuit, and we knew that the narrowed valve had fused cusps with a pinhole orifice, which we needed to make bigger. Her ongoing survival depended upon that.

  Nothing is simple in neonatal heart surgery. There is substantially more fluid in the cardiopulmonary bypass circuit than in the baby itself, which poses some difficult questions. How much will it dilute the blood? How much flow does the baby need and at what temperature? And how much cardioplegia is required to stop a thick, walnut-sized heart?

  A surgeon doesn’t work in isolation, but I couldn’t concentrate on the technical details if I was constantly having to tell my assistants what to do. Happiness is a consistent surgical team. Same people every case, the American way. People you can trust to do a good job, not a different face every time depending upon who is available. My enthusiastic international fellows were the answer, professionals who were eager to be there for every case because they wanted to learn. I was surrounded by top guys from the US, Australia, Japan and South Africa, although it didn’t matter where they came from as long as they were keen. I certainly didn’t need whinging registrars simply rostered to be in my theatre when they would have rather been off duty, all set to clock off when their European working time hours expired. Stocking up on rest does not make for a great surgeon.