In a panic, Nicky bundled all three children into the car and was already waiting at the medical centre when the doctors arrived. There was no crass reassurance or chastisement this time, and an ambulance was called immediately. This took Oliver and his mother directly to the nearest hospital, Stoke Mandeville on the outskirts of Aylesbury, while the bemused brothers, half-dressed, had to wait at the doctors’ surgery for family friends to pick them up and take them to school.
During the winter of 2009 there was an epidemic of swine flu in Britain, and several cases had been identified at Oliver’s school. The H1N1 virus belongs to the influenza family and is generally found in the respiratory tract of pigs. With an incubation period of as little as twenty-four hours, the strain responsible for the epidemic had been imported from Mexico and was highly contagious. It inflicted a mortality rate of 5 per cent, principally by causing pneumonia in the elderly or vulnerable. Oliver was nothing if not vulnerable.
At Stoke Mandeville he was taken directly to an isolation room, not the general children’s ward. The swine flu diagnosis proved correct, yet there was no immediate therapeutic option to make the virulent viral infection any better – when Oliver complained of headache with photophobia then coughed up blood, his doctors wanted to give him the antiviral agent zanamivir, better known by its brand name Relenza, directly into the blood stream, but there wasn’t any in the hospital. By the evening the poor boy was desperately ill, suffering from two rare conditions that were conspiring to kill him. Given that Nicky stayed with him minute after minute, perhaps the best description of the next few hours comes from her letter to me several years later:
It is hard to convey the horror you feel as you face losing a child. I love all my children equally but had a special bond with Oliver through the sheer number of hours and days we spent together in hospital over his first six years of life. During that night in Stoke Mandeville, Oliver was becoming increasingly restless and uncomfortable. He was leaning up against me in bed, then he said, ‘Mummy, I can’t breathe any more,’ at which point I screamed for help. After that I can only describe it as all hell breaking loose. Alarms started ringing, someone forced a pipe down his throat, then someone else cut off his pyjamas to shove a drip cannula into his groin. I was bundled out of the room in a state of shock. Some kind mother from the children’s ward came to hold me until I was allowed back into the room. I was truly terrified.
Curiously, Oliver hadn’t even been connected to a mechanical ventilator. A doctor and a male nurse knelt beside him all through the night and manually pumped oxygen into his lungs through a black Ambu bag. Perhaps there were no children’s intensive care beds there, or none available, but the two kept Oliver alive until the paediatric intensive care retrieval team arrived from Oxford. Only then was he attached to a respirator for the return journey in the ambulance.
Because of the swine flu, Oliver was housed in an isolation room with full monitoring of his cardiovascular status via cannulas in both arteries and veins. None of the readings were encouraging. He had very low oxygen levels in the blood, low blood pressure, a dangerously fast heart rate and his kidneys were not producing urine. Skilled manipulation of vasopressor drugs and diuretics improved the situation for a while, but any conventional lines of treatment were hindered by the blockage within the heart. Because of the obstructive physiology, there was no means of relieving the severe congestion in Oliver’s lungs and liver, nor any method to increase the blood flow around his body. With progressive jaundice and kidney failure, the metabolic mayhem in his blood stream worsened by the minute.
That Thursday evening I had dinner in a fancy restaurant in Vienna, while Nick Archer was on a flight back from Australia, neither of us of any use to Oliver or his anxious family. Fortunately, there was a very conscientious locum cardiologist on call, Dr Dimitrescu from Slovenia, and the intensive care doctors asked her whether she could do anything to help. It was blatantly obvious to her that Oliver’s unique combination of conditions would prove fatal if nothing changed, so she promptly called the surgeons at the Brompton. They offered to operate on the boy the following week, as long as the viral illness was under control. Toxic infections alongside cardiovascular collapse and liver and kidney failure did not provide the ideal circumstances for a spin on the heart–lung machine.
By 2009 all cardiac centres were under scrutiny regarding their death rates, the days of salvage surgery having passed. What’s more, the Royal Brompton was a heart and lung centre with no specialists in general paediatrics. They were less well equipped to deal with the infectious illness, while the Oxford intensive care doctors were better placed to manage the dire consequences of swine flu. To do that they gave sildenefil – or Viagra, as it’s better known – to reduce the blood pressure in Oliver’s lung arteries, together with the antiviral drug Tamiflu, and he gradually stabilised overnight.
As the hours ticked by, Nicky was reassured to be in a dedicated children’s hospital within the sprawling John Radcliffe campus. There were eight other children on ventilators, each surrounded by loving and anxious parents. The doctors seemed confident and the nurses were kind. Yet there were terrible things to be seen: the toddler with meningitis and gangrenous legs who was constantly hooked up to a kidney dialysis machine, the septic baby with a hydrocephalus who was scheduled for brain surgery, and the boy with black eyes, a bandaged head, pins in his legs and drains in his chest following a road accident. And there were a couple of my patients recovering slowly.
In the parents’ sitting room each mother had her own story to tell, while over in the nurses’ coffee room the doctors and nurses huddled together, exchanging details about their patients. It would be easy to become institutionalised here, but after the weekend Oliver was going to be transferred to the Brompton for his critical operation. At least that was the plan. Some of the parents asked why the risk of moving him to London was being taken when he could have his surgery here in Oxford; Nicky and Richard wondered about this too, but they had been given a definite plan and knew the Brompton well, having spent many hours there focused on Oliver’s lungs while remaining totally in the dark about cor triatriatum. No one seemed to understand that term, even now.
On Friday morning Nick Archer flew in to Heathrow from Australia and I came back from Vienna. During the intensive care round, Oliver’s chest X-ray was carefully scrutinised. If anything, his lungs were now less congested after the Viagra, and the diuretic drugs had boosted his urine output. On the negative side, there was a sizeable collection of free pleural fluid around the left lung – what we call a pleural effusion. If this continued to accumulate it would interfere with the ventilation of the lung and predispose him to pneumonia. The consensus was that the fluid should be drained, but there was too much for a simple needle aspiration. Oliver needed a proper chest drain to be inserted between his ribs. The duty registrar was designated to insert the tube, which would be done through a small incision beneath the left armpit – a routine procedure, particularly in any heart surgery unit. Sedated and unconscious, Oliver would know nothing about it. The procedure appeared to go well, since 400 ml of straw-coloured fluid deposited itself rapidly into the drainage bottle. Job done.
Archer being Archer, he called into the hospital on his way home from Heathrow. Dr Dimitrescu was pleased to see him back, having wanted some moral support with Oliver’s care over the weekend. By then, Nicky felt emotionally drained:
I had my other two sons visiting that afternoon because it was half term. I had left Oliver looked after by a gowned and masked nurse so I could show the boys where Mum and Dad were staying in the parents’ accommodation. The phone rang in the room and a nurse just told me to get back to the unit immediately. I knew something was terribly wrong. I had left him with just one nurse and came back to a room full of people, none of whom had bothered to mask up. One of them was Dr Archer. Since inserting the chest drain, Oliver’s blood pressure had drifted down, then disappeared altogether. Once the chest tube h
ad drained the clear fluid, a small amount of bright red blood came out, then nothing. Amid the frantic efforts to resuscitate him they had called for a chest X-ray. Dr Archer was staring at it on the screen. The left chest cavity was now completely opaque – what they called a ‘white out’.
Insertion of the chest drain had either torn an intercostal artery, which runs in a groove below the rib, or penetrated the lung itself. Either way, the outcome was the same: a left chest full of blood and no blood pressure in the circulation. So why didn’t blood come out of the drain itself? Because fresh blood clots rapidly and blood clot had occluded the child-sized drainage tube – hence a trickle of fresh blood, then nothing. After that the ongoing bleeding silently filled poor Oliver’s chest. Initially the circulation compensates by constricting the peripheral small arteries, but eventually the whole system decompensates and the shit hits the fan. This could well be the end of the road.
Archer had two instructions: first, ‘Give him some uncrossmatched blood fast’; second, ‘Find out whether Westaby is back in the country.’ The switchboard put out a call for me during the Friday afternoon rush hour. I had just turned off the Oxford ring road heading for Woodstock and was looking forward to seeing my family. The operator told me that I was needed in the paediatric intensive care unit right away. I asked what for, assuming that something had gone wrong with one of my babies.
She just said, ‘Sorry, but Dr Archer wants you there.’
No point trying to debate that, so I headed back to the hospital as fast as I could, deposited my car in an ambulance bay and purposefully strode down the corridor to paediatric intensive care. I didn’t need to ask which patient they wanted me to see. The isolation room was packed with doctors and nurses, all with grim expressions on their faces. I could hear a woman weeping in the relatives’ room. So much so that I feared I was too late. There was none of the usual banter, no ‘What kept you, Westaby?’ that would normally greet me when I had broken my neck to drive into town in record time. The gravity of the moment told the story.
Oliver had no perceptible blood pressure and a heart rate so rapid that it was not achieving anything of significance. The paediatric registrar was squeezing a bag of blood, forcing it into Oliver as fast as it would transit his constricted veins. Nick showed me the chest X-ray and summarised the case: ‘He has cor triatriatum with an obstructed left heart and has just filled his left pleural cavity with blood. On top of that he has swine flu. He’s going to die in the next few minutes unless you can get him onto the heart–lung machine.’ So not exactly, ‘Welcome back. How was the conference?’
I went to the parents’ room with that consent form already filled in and my section signed. I apologised that there was no time for introductions or explanations. Oliver was close to death and we had to move fast. I needed to be pushing the bed down the corridor, not bullshitting about risks and benefits.
This was poor Nicky’s written record of the conversation:
I remember saying that we didn’t want him to have surgery as we had been told that he was too weak to operate on. You told us we had no choice. I remember your manner with us so vividly. Your confidence, reassurance and total conviction that you could help us was the only reason I let my boy go. I can’t overemphasise enough how much that helped us at that awful time. Can you imagine if someone had come in, saying that they would give it a go, but things weren’t looking good? You said to me as you wheeled Oliver away that you would bring him back to us. Then Richard and I just sat in the waiting room holding each other, trying to work out if enough time had gone by for him to have at least survived getting on to the heart–lung machine.
This was generous feedback received many years later, and very welcome too because it endorsed my disinhibited approach. Who needs introspection and equivocation when your child is dying? The GMC might not have endorsed my consent process, but was I troubled by that? Draw your own conclusions. We had Oliver supine on the operating table within five minutes of leaving intensive care. Our paediatric cardiac anaesthetist Kate Grebenik was not on call, but she abandoned cake-making with her daughter to rush back into the hospital and join in the resuscitation efforts. No questions, no ifs, no buts.
How long does it take to expose the heart in an emergency? Around one minute. Run the scalpel hard down through both skin and fat, then run the power saw up the bone. Prise the sternum open with the metal retractor, slit open the fibrous pericardium and there it is. Place a couple of purse-string stitches in the aorta and right atrium, push in the cannulas and go ‘on bypass’. Then everyone can relax and take stock. Oliver was safe at last.
The first task now was to cut into the pleural cavity under the left half of the breast-bone and suck out liquid blood into the extracorporeal circuit – everything that was transfusable we needed to put back into the blood stream. Some of it had already clotted, slithering out like slices of liver at the butcher’s but destined for the waste bin not the frying pan. Given the metabolic derangement of near death, the anaesthetist’s job was to neutralise lactic acid with sodium bicarbonate and adjust the level of potassium in the blood. In the meantime I set about stopping the heart with icy-cold cardioplegia fluid and opening the dilated part of the left atrium. With a retractor in place, the mitral valve usually comes into view immediately, but not in this curious heart. The valve itself was completely obscured by what looked like normal atrial wall. The only clue to the existence of the murderous membrane was the desperately small aperture between the main left atrial chamber and the small antechamber directly proximal to the mitral valve itself. It was like exploring Tutankhamun’s tomb. One slip, and something of great importance could be damaged.
I gently inserted a right-angled forcep through the orifice and tentatively tugged on it. This didn’t shift the flaccid left ventricle, so I knew I was not pulling on the mitral valve itself. Reassured, I cut through the tented membrane with scissors, revealing the valve orifice beneath. Once safe, I cut circumferentially around the whole thing, changing Oliver’s outlook at a stroke – with a normal heart, swine flu wouldn’t kill him. I asked our scrub nurse to put the postage-stamp-sized piece of tissue in a pot of saline solution so I could triumphantly present the trophy to the petrified parents.
The tense atmosphere in theatre lifted palpably as I sewed up the atrium, not least because the staff could see an end to the evening’s dramatic proceedings. With blood flowing briskly through Oliver’s tiny coronary arteries, his grateful heart muscle stiffened and started to beat spontaneously. As we allowed the left ventricle to fill, a vigorous pulse pressure wave appeared on the oscilloscope screen. Much greater volume was now pushed out into the aorta with a slower heart rate. This was the sort of instant cure that only heart surgery can offer.
Here is the penultimate paragraph of Nicky’s emotional recollections from that evening:
I think Professor said it would be three to four hours before we would hear anything. After about two hours I prised myself away from Richard and left the parents’ room to find a loo. I will never forget that dim hospital corridor, empty at night, when I saw you leave the theatre and walk towards me from the other end. It seemed like forever until you got to me and I froze. I was a poleaxed, perspiring pillar of anxiety. What were you about to tell me? Was he dead or alive? I desperately tried to read your expression but the light was so poor and you were in the shadows. It was sort of in slow motion as we met face to face in that endless fateful corridor. You put your hands on my shoulders and said to me, ‘It’s all good, it’s all good.’ How I didn’t just collapse in a heap I will never know! I still can’t think about that moment without a tear. I have never known fear like that (well, only once before, when we were held hostage in our own home by a knifeman in a balaclava). It was a physical pain in my stomach. I still can’t believe how the stars aligned that Friday afternoon to keep Oliver here with us. It felt like you came, sprinkled some magic, then left again. You should feel proud.
Once w
e had corrected the biochemistry of death, removed the murderous membrane and transfused Oliver with donor blood, he never looked back. The swine flu that precipitated his sudden decline simply went away, as viruses do. The lad recovered and felt like a tight collar had been removed from his neck. He is now a normal athletic teenager, having been a whisker away from the grave. Nicky was correct about one thing. They had been in the right place at the right time – a children’s hospital that could cope with his complex issues, with a dedicated team who had complete disregard for the fact they were not on call that Friday evening. What mattered to them was saving the boy’s life, which they did and were thrilled about. They could all go home for the weekend and let everyone know that they had saved a young child.
Somewhat shell-shocked, I drove off towards the sunset over Woodstock. Saving Oliver had been a gargantuan effort by dedicated medical professionals, but I’d learned in Vienna that Oxford children’s heart surgery was soon to be closed down. After the notorious Bristol heart scandal, a surgeon working single-handedly could never be regarded as acceptable.
Bristol was a wake-up call for my whole profession, not that there were many children’s heart surgeons in the first place. The fallout made national headline news for weeks on end. Bereaved parents demonstrated in the streets, flowers were piled high outside the hospital gates as if it were a graveyard, the surgeons were vilified and made out to be mass murderers. Why? Because the death rates after heart surgery for children at the Bristol Royal Infirmary were double those in other centres, and for some operations the mortality rate was said to be prohibitively high.
The paediatric cardiologists, anaesthetists and nurses had all suspected the problem, then one broke cover. Yet there had never been an attempt to disguise the results. As the leader of the public inquiry plainly stated, ‘Bristol was awash with data.’ Every hospital that operated on children’s hearts collected information on death rates, and the Royal College of Surgeons and the Society of Cardiothoracic Surgeons were meant to review that information.
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