So why was he in hospital this time? For weeks the boy had been losing weight and feeling generally unwell, and by now he was skin and bone, a pathetic sight given his swollen and deformed joints. Even with the air conditioning on at full blast, he would sweat profusely during the night. Then he had rigors, shivering uncontrollably as if he were having an epileptic fit. He also had pains in the chest, worse when he breathed in deeply – pleurisy brought on by dead wedges of lung, what we call pulmonary infarcts from infected emboli.
An esteemed American paediatric cardiologist made the diagnosis in five minutes. Philippe had tricuspid valve endocarditis, together with an infected ventricular septal defect directly beneath it. He was already receiving a powerful combination of antibiotics, but the fever didn’t settle. Serial echocardiograms showed proliferating infected vegetations on the valve, which might grow through into the left ventricle then cause a stroke. I was asked to close the hole in the heart and either repair or replace the torrentially leaking valve. Repair was easier said than done, with aggressive bugs chewing through the leaflets. But he was a child, so just chopping out the valve as with the drug addicts was not an option. If the worst came to the worst, I would sew in a pig valve.
I already knew about contaminated blood products and the AIDS epidemic in haemophiliacs. Between 1981 and 1984, 50 per cent of haemophiliac patients in America were infected with contaminated blood and many died during the following decade. The same happened in Oxford, where the litigation involved was still active in 2018. AIDS could have explained the boy’s emaciated state, but endocarditis would do that too. The responsible way forward would be to test him for HIV and hepatitis so that we could warn the staff. This required the express permission of his parents, but only Philippe’s mother had been seen in the hospital. I was asked directly whether I’d be willing to operate on the boy if he was HIV positive. Without hesitation I responded that of course I would – the poor lad had suffered so much in his short life and would certainly die within days if no one was prepared to intervene. I would set aside the danger to myself. That’s what surgeons do. Or did.
The boy’s French mother took immediate offence at the mention of AIDS in regard to her son, insisting that this had never mentioned by medical staff before and claiming that no one they had met through the haemophilia clinic had ever contracted HIV during their treatment. Which clinic did the boy attend? She wouldn’t say. Had he been tested for hepatitis? Yes, and he didn’t have it. My American colleague sensed a standoff and an impending meltdown. The woman was already stressed enough at the prospect of her son’s surgery, and her husband was nowhere to be seen. This was Saudi Arabia – strict laws, different culture, and AIDS was a dirty word.
I scheduled the urgent surgery and resolved to warn the staff of the potential risks. But my focus was on managing his risk of bleeding. I needed to organise the liaison between the anaesthetists, perfusionists, haematologists and the blood bank. Were there any guidelines for heart surgery in children with haemophilia? Not in 1987. So we had to work it all out from scratch. How much factor VIII concentrate did we need to transfuse to raise his levels from negligible to normal and eliminate the bleeding risk? That depended upon his weight. How much more should we infuse during cardiopulmonary bypass and then post-operatively to maintain his blood level? Between us, we worked out a dose regime and ordered the stuff on an urgent basis from the drug company in the UK. I couldn’t take him to surgery without it, so I asked that it be dispatched overnight. We decided to monitor his factor VIII levels every six hours in the days following the operation and try to keep them normal for at least a week afterwards. I would also give him my magic medicine aprotinin during and after the surgery to keep his platelets sticky.
I asked Julie, a vivacious, fun-loving Aussie who was bloody good at her job, to act as scrub nurse for the operation, and I told her that we didn’t think he was hepatitis or HIV positive. Having said that, I couldn’t absolutely guarantee it, but the mother had reassured us of the fact. There was general and widespread hysteria about AIDS at the time as it seemed that no antiviral treatments had yet been developed and the mortality rate was high, and many felt that it was unreasonable to operate on HIV-positive patients because they were destined to die whatever we did. Efforts to defuse the backlash against the gay community gained little traction in Saudi Arabia. Even Julie was uncharacteristically reticent at the prospect, but she agreed to handle the instruments and keep me safe. I simply told the team that we should take the same precautions – hit and miss though they were – that we would use for a hepatitis case. Perhaps the mother’s insistence that serology was off limits should have told us something.
I had a cunning surgical plan for the boy. I intended to clear the infected debris from the larger of the two tricuspid valve leaflets, then partially detach it to provide access to the hole between the two ventricles. I would close that with a Dacron patch, then enlarge and restore the anterior tricuspid valve leaflet with a patch of his own pericardium. Surgeons always need to have a strategy, but unpredictability was the exciting part about emergency surgery. I would keep it simple. If the valve fell to bits, I would simply replace it – easier surgery that didn’t take much thought or judgement. I just needed to avoid stitching near the invisible electrical conduction system where it passes close to the ventricular septal leaflet. Destroy that, and the boy would need a pacemaker for life.
When I operated, I focused on the technicalities of the procedure and what I needed from the heart–lung machine – when to cool the body, when to rewarm, when to drop the flow, when to increase it. I would check the potassium level in the blood and whether there was urine flowing into the bag. I concentrated on the dangers to the patient, not the risks to myself, but it was not that easy for the assistants. Hepatitis was bad enough, but inoculation with serum from an AIDS patient terrified the life out of most healthcare workers.
Yet Julie was her usual cheerful self that morning, radiating charm and calm. All the nurses wore gloves and plastic face shields whether they were standing at the operating table or not, and the runners would not handle the swabs, picking them up with long metal forceps, then dumping them in a plastic bin. Julie double-gloved, with a niqab covering her head and goggles to keep blood out of her eyes.
Philippe was a sorry sight, lying there with his deformed joints, gaunt frame and skinny limbs covered in bruises. So much for factor VIII replacement. I told Julie and my surgical assistants to stand back as the saw spattered bone marrow onto the drapes and copious volumes of straw-coloured fluid were dispatched into the sucker bottles from around the heart and lungs. Without a functioning tricuspid valve, the right atrium was tensely distended, and dark blood pissed out as I placed the purse-string sutures that formed a seal around the bypass cannulas. To avoid Julie coming into contact with the needles, I carefully set the needle holders down on a magnetic mat by the bypass tubing. She could avoid handling the contaminated needles by shaking them from the jaws of the holder directly into the sharps bin.
At first sight the tricuspid valve looked like a bunch of grapes and had the sickly smell of digesting protein. With an addict I would have chopped the whole thing out, but for a child I needed to construct a silk purse out of that sow’s ear of rotting tissue. I became more optimistic once most of the vegetations were scraped away and dumped into a bottle for the bacteriology department, and Julie’s tense shoulders had dropped perceptibly by now. She was more relaxed, conscious that I was making every effort to keep her safe. The anterior tricuspid leaflet had a large hole eroded through its middle, so I simply enlarged it to give myself a view of the ventricular septal defect beneath. The hole was also obscured by infective crap that I disposed of down the high-pressure sucker. It was vital that none slipped through into the left ventricle then found its way into the boy’s brain.
I closed the hole in the ventricular septum with a Dacron leaflet, then replaced most of the body of the anterior leaflet with prese
rved cow pericardium. No drama, and the heart separated easily from the bypass machine with lower pressure in the veins. Once the boy was given antibiotics targeting the infecting organism, he ought to be in the clear. We were on the home straight, so the tension in the room started to dissipate. I took the No. 11 blade to make the stab wounds for the chest drains, then carefully and deliberately placed the scalpel on the magnetic mat so that Julie could dispose of the blade.
With drains and two pacemaker wires in place, I set about closing the breast-bone. The stainless-steel wires are pulled into place on the end of a thick, sharp needle that is manually driven through the bone. I held the shaft of the needle tightly in the jaws of a heavy metal needle holder, which is usually handed to me directly by the scrub nurse. For this potentially infected case, we’d agreed that Julie would place the holder down on the magnetic mat and I would take it from there to avoid hand-to-hand exchange of the lethally sharp instrument.
This was all going smoothly until Julie’s attention was drawn away to count the swabs before the edges of the sternum were pulled back together. I set the needle holder down with the last needle fixed in the jaws but pointing upwards. I was watching the heart, not Julie. I expected her to pick it up directly and toss it into the sharps bin. But she was facing her runner, not me.
As I said, ‘Here’s the needle, Julie,’ she swivelled on her standing stool, lost balance and reflexively thrust her hand down onto the operating table to prevent herself falling. Her palm came down hard on the sharp point of the bone needle held fast by the jaws of the holder, the bone-marrow-contaminated spike being driven deep into her palm. She screamed, although I couldn’t tell whether this was from the pain or simply the awful realisation that she had a deep needle-stick injury. Probably both.
Julie stepped backwards from the stool and stared at her wounded palm. Her glove had been torn when she drew her hand away from the spike and the wound was now briskly pumping blood. I barked at her to let it bleed, naively believing, as most of us did, that any contamination would be washed out. She stared at me, her piercing dark eyes clear through the goggles, and I registered the mix of fear and anger as she stood offering the bleeding hand to me. As her blood dripped onto the floor she mumbled, ‘For God’s sake, why did you leave it with the sharp end sticking upwards?’ I had no answer.
I felt as sick about those disastrous few seconds as Julie did. She didn’t know about the haemophilia–HIV link. Her immediate concern was the hepatitis risk, but we could do something about that. I stepped away from the table, discarded my blood-caked rubber gloves and said, ‘Let me help.’ There was an old-fashioned approach whereby we used to suck on a needle-puncture wound to draw out the evil humours. Totally worthless, I suspect, but she didn’t try to stop me. It must have been a bizarre sight as we stood together, with me sucking her hand. I told my glum assistants to get on and close the chest, then escorted poor Julie to the coffee room.
I sat her down still quivering with the shock of it all, while I gathered my own thoughts. I knew that there were written guidelines for hepatitis post-exposure prophylaxis, and I quickly found the operating theatre’s protocol book, which read:
Unless already known, the infectious state of the source should be determined. Unless known to be negative for hepatitis B and C viruses, post-exposure prophylaxis should be initiated within one hour of the injury. Prescribe a booster dose of hepatitis B vaccine together with hepatitis B immunoglobulin for added protection. There is no vaccine for hepatitis C so treatment consists of monitoring for seroconversion.
In other words, you just wait and see if you get it. That’s why Julie was so pissed off. She had gone through all this before back home in Australia after a needle-stick during a heart transplant when the donor was discovered quite by chance to be a hepatitis carrier.
I went back to theatre and asked the anaesthetist to draw some blood from the child for serology testing, but he told me that this couldn’t be done in Saudi Arabia without the mother’s permission. My blood pressure was already too high, but it immediately shot through the roof.
‘Just take the fucking blood,’ I yelled. ‘I’ll write the forms and take it to the lab myself.’
On the request form I wrote: ‘Desperately sick haemophiliac child after cardiac surgery. Need to know what we are treating. HIV and hepatitis status please.’ The boy was still on the operating table, so right now I was his guardian. I just needed to convince the lab that the tests were in the boy’s interest, which they were. But my motives were dishonest. Philippe was doing fine. It was Julie I was concerned about. Hepatitis was bad enough, but AIDS was a death sentence in the 1980s. So I left Julie with her bleeding hand under a tap and set off to find the laboratories.
I was expecting a confrontation about permission to test for HIV, but it never materialised. AIDS was rare in Saudi Arabia and the assays were new, so I guess that they were eager to try them out. It was not the virus itself that the assays measured but the antibodies produced by the patient in response to the infection. Then the obvious question – how soon could they let me know if the patient was HIV positive? They said they’d call in a couple of hours, but if the boy did have AIDS what should I do? I felt a deep responsibility for Julie, not to mention genuine affection. Her cheerful disposition had made my life much happier than it might have been in a difficult environment. One expression I often heard from my beloved elderly mother was, ‘Put yourself in their shoes. Try to understand what it’s like to be them.’ She would apply that principle to the sick, the disabled, the mentally ill and the poor. Or should I say poorer. ‘They all have feelings,’ she used to say. Those few phrases defined empathy.
By the time I returned to the operating theatres some shit for brains had terrified Julie by warning her that Philippe could be an HIV carrier. Her sore hand now bandaged, she was pleading for someone to do something, anything, to dampen down her fear. I rang a colleague to ask whether there were any American infectious disease doctors in the city who knew about AIDS and could help us. Then I needed to talk with the boy’s mother. While Julie was in meltdown about the risk of contracting AIDS, Philippe’s mother was desperate for news from the operating theatre. I guess my face had that worried look as I approached, because she burst into tears as soon as she saw me. I held out my hand to her with the words, ‘He’s fine, it all went well.’
First things first. I described what I had done inside that rotting heart and said she could soon sit with the boy for an hour or so. I asked whether Philippe’s father would be joining her and was told that he was ‘somewhere in Europe’. Non-committal. I had to get to the point. Given the infected blood-products scandal in the US and Europe, had anyone ever tested her boy for HIV? I apologised for pushing her on this, but explained that a young nurse had been contaminated with Philippe’s blood and desperately needed reassurance that there was no risk of AIDS or hepatitis. My question was carefully worded so as not to require a verbal response. I was as much a psychologist as a psychopath, and simply watching the expression on her face would give me the answer.
It was like throwing a switch, as she quickly diverted her gaze to the blank wall. Next question. ‘Please tell me. Does Philippe have AIDS?’
Defensively reverting to her own language, she softly murmured, ‘Oui.’
I took her sweaty hand and gently asked her why she hadn’t told us.
‘Because you wouldn’t have operated on him if you had known, and I didn’t want him to die.’ With that, the poor woman fell onto the bed and started to weep uncontrollably. It was not a happy day.
We had to quickly find some sort of treatment for Julie, but I had no idea what that might be as quite frankly I knew nothing about HIV. I had never previously thought about it, yet I needed a firm grasp on the way forward before I faced her. By amazing coincidence, only a few weeks earlier the US had approved an antiviral therapy for AIDS known as AZT. For needle-stick injuries involving contact with an infected
patient, the recommendation was to give AZT as soon as possible after exposure, certainly within seventy-two hours for there to be any hope of success. The treatment had to be continued for a month, and the side-effects included kidney failure, nausea, vomiting and diarrhoea. When I pressed the lab for Philippe’s serology, they couldn’t tell me whether it was positive or negative. It was their first attempt. I pressed harder, asking whether they could rule out it being positive, but they said they couldn’t. I wondered whether dilution of his blood by the bypass machine or the drugs we had used like heparin or protamine could have made any difference.
I resolved to tell Julie that the test was negative but insist as much as I could that she should go through the AZT prophylaxis regime anyway. Better be safe than sorry. I was hedging my bets here. It was a fine balance between trying to minimise Julie’s distress and knowing the full implications of the mother’s confession that her son was an HIV carrier. With other symptoms masked by the endocarditis, he might well have full-blown AIDS, and I needed to warn the intensive care unit about that now as a single room and spacesuits would certainly be required. As far as the nurses were concerned, this was worse than smallpox or bubonic plague.
We drew a blank on finding AZT, having called the medical director of the hospital, whose reply went along the lines of ‘What’s AZT?’ His main concern was that other patients would not pay to come to the hospital if they learned that it was harbouring an AIDS case. Worse still, he now wanted everyone who’d been in contact with the boy to be tested for AIDS too, and the theatre obviously had to be cleaned and fumigated before it was used again. I could see this deep-cleaning regime extending all the way back to the airport, so I made the decision that we needed to dispatch poor Julie back to Sydney as quickly as possible. That would have to be as soon as tomorrow for AZT to be effective. She was unlikely to be able to afford an expensive ticket bought the day before travel, and as I felt strongly that the hospital should cover that cost I’d have to confront them about that. If they wanted to keep the AIDS story quiet, they should help Julie to leave the country sharpish, preferably in business class.
The Knife's Edge Page 14