Fragile Lives Read online

  ‘We’re so pleased to see you,’ she said. ‘How was the trip?’

  ‘Good. Very restful,’ I lied. ‘We need to get on with this, don’t we?’

  Katsumata had managed to find an electric convection heater to take the chill from the room, and we all set about breaking the ice. They explained that a family member was a representative for a heart valve company and knew me well. He’d been expecting to see me at the meeting in Australia. They were sorry about my aborted trip but profoundly grateful that I’d come back as they wouldn’t let anyone else operate on their little girl. Despite the warmth, Becky was now trembling uncontrollably with abject fear. Poor kid. Finally, after weeks in hospital the time had come – the day she might lose her baby.

  I don’t do transmitted anxiety if I can help it. But it’s much more difficult for my anaesthetist colleagues who have to deal with the agonising separation when the patient is given over to them. I described my planned operation to the team and explained why I felt it would be an improvement on existing techniques. The new left coronary artery would be constructed with a flap of aortic wall that would sit below a corresponding pulmonary flap to make a tube, the latter containing the misplaced origin of the left coronary artery at its apex. The product would be a new coronary artery delivering high-pressure, well-oxygenated blood directly from the aorta, where it should have come from in the first place. Blood fully saturated with oxygen would then supply the failing heart muscle and prevent further heart attacks. Katsumata was intrigued and excited by my proposed approach, so much so that he rushed off to call the hospital’s film crew.

  With severe heart failure, the risks of the operation were substantial. Becky’s shaky hand signed the consent form and I walked back with them to the children’s ward. When we reached the cot Kirsty’s heart failure was worse than I imagined, indeed the worst I’d ever seen in any child. She was emaciated, with virtually no body fat, her heaving ribs and rapid breathing a consequence of her congested lungs, and her abdomen swollen with fluid. She was still a pretty baby, but without immediate surgery she’d be dead within days. Although a voice in my head screamed, ‘Oh shit,’ my mouth correctly said, ‘I’ll go to theatre now.’

  Mike and the nurses were busily preparing drugs and catheters in the anaesthetic room. He knew the score, having already anaesthetised Kirsty for the cardiac catheterisation, and some of the monitoring lines were still in place.

  ‘Do you really think you can get this baby through?’ was his opening line.

  I didn’t reply, bidding a cheery ‘Good morning’ to the nurses and perfusion team in the operating theatre, then went straight to the coffee room. I wanted to avoid seeing Becky leave her baby with strangers, always an excruciating event.

  When I returned, Kirsty was already on the operating table, covered in green drapes held in place with an adherent plastic drape. All that was visible were her bony little chest and swollen abdomen. Heart surgery needs to be an impersonal, technical exercise.

  I joined Katsumata and my six-foot, six-inch Australian colleague Matthew at the scrub sink. While we scrubbed in silence the film camera was carefully positioned next to the operating lights. There was a palpable buzz of excitement. We were about to do something novel, esoteric and risky.

  There was no bleeding as I drew the scalpel blade along the skin over Kirsty’s breastbone. In shock, her skin capillaries had shut down to divert blood to vital organs. Next the electrocautery cut through the thin layer of fat onto the bone, producing its characteristic buzzing noise accompanied by a whiff of burning as the current cauterised the oozing blood vessels, although this time there were few of these. Then the electric saw cut through the length of her sternum, exposing bright red bone marrow.

  We used a small metal retractor to crank open her tiny chest, bending and stretching the joints between the ribs and the spinal column. In babies the fleshy thymus gland lies between the sternum and the fibrous sac around the heart, but by now it had done its work producing antibodies for the foetus so we removed it.

  The electrocautery continued its messy but vital work, cutting through the fibrous pericardial sac to expose the heart, straw-coloured fluid pouring out and being drawn away by the sucker. Meanwhile the other members of the team worked on silently. Mike gave heparin to stop Kirsty’s blood from clotting in the heart–lung machine, the perfusion team set up the complex array of tubing, pumps and oxygenating equipment to keep Kirsty’s body alive when her heart was stopped, and the scrub nurse Pauline concentrated on having the correct surgical instruments ready to slap into my palm. I rarely had to ask for anything. This complex, highly coordinated work relies heavily on having a steady, consistent team, and as most of them had been with me for years they enjoyed my complete confidence.

  As we pulled up the edges of the pericardial membrane to display the heart, Katsumata audibly drew breath and murmured, ‘Oh shit.’ It was truly a frightening sight. Back from his first cigarette, Mike popped his head over the drapes in response to Katsumata’s comment. I agreed that things were even worse than we’d thought. Others could see it all on the video screen.

  What should have been a walnut-sized heart was revealed to be the size of a lemon. The enlarged right coronary artery was obvious, its many dilated branches crossing over towards the left ventricle. While the right side of the heart pumped vigorously against raised pressure in the lungs, the left ventricle was hugely dilated and barely moved. Patches of newly necrotic muscle merged with areas of white, fibrous scar tissue, the result of many small, painful heart attacks endured by Kirsty during her first six months of life. Katsumata was right to be concerned, but I didn’t respond to his anxieties. We were committed to rectifying that blood supply and hopefully improving matters. Kirsty had survived to this point and it was our job to keep it that way.

  Having exposed this heart I began to question the wisdom of attempting such a complex operation having come straight from a day-long flight. Yet what would have been gained by turning her down for surgery or procrastinating further?

  For Kirsty there was no alternative. Urgent heart transplants were virtually impossible in babies, so this replumbing of her heart’s blood supply was her only chance of life. Grim Reaper was perching on the video camera and we all knew it, but now I was committed there could be no turning back.

  Tiny pipes were inserted to connect her to the heart–lung machine, and I then gave the signal to go on bypass. The perfusion technician turned on the roller pump and Kirsty’s heart gradually emptied. At this point technology had taken over, diverting blood away from her lungs and into the synthetic oxygenator. With her empty heart still beating I cut through the pulmonary artery above the origin of the anomalous coronary. There was the opening to the vessel, like the pearl in an oyster. Now we had to connect it without tension to the high-pressure aorta that lay almost an inch away. The conventional method was simply to try to stretch and re-implant the origin of the vessel into the side of the aorta. But this could result in thrombosis and blockage, so I pressed on with my new technique.

  This delicate exercise could only be achieved by clamping the aorta and temporarily stopping all blood flow to the heart. We’d protect the muscle by infusing cardioplegia fluid directly into both coronary arteries, flushing all the blood out and collapsing the ventricle like a punctured football. This induced state of inactivity, common in heart surgery, is reversed simply by removing the clamp on the aorta, which allows blood from the heart–lung machine to flow back into the coronary arteries.

  For the reconstruction of this tiny vessel the stitching had to be precise, accurate and watertight. The procedure went well. Just thirty minutes after the heart was stopped, the conjoined flaps restored Kirsty’s coronary artery anatomy to what it should have been. As the clamp was removed, bright red oxygenated blood – rather than deoxygenated blue blood – flooded the left ventricular muscle. Her heart changed from a pale pink colour to deep purple, then became almost black in parts. Before reconstructing the pulmona
ry artery we checked that there was no bleeding from the lines of stitching behind it. Soon the electrocardiogram showed uncoordinated electrical activity, and the heart stiffened with renewed muscle tone.

  Unusually for a child, her reperfused heart kept writhing and squirming in ventricular fibrillation. We used an electric shock directly through the muscle to restore normal rhythm. Ten joules – zap! The heart defibrillated and stopped wriggling. It was now motionless but we expected a normal rhythm to resume at any moment. But it didn’t. The purple ball fibrillated and squirmed again, and the anaesthetist’s head popped over the drapes to request the obvious – ‘Shock it again!’ We did and the same thing happened. It wasn’t coming back.

  This was serious electrical instability caused by the scar tissue, so we gave the appropriate drugs to stabilise the muscle cell membranes.

  ‘Let’s give it more reperfusion time,’ I told Mike.

  ‘OK, I’ll go out for a fag then,’ he said.

  Twenty minutes later we tried again. Twenty joules – zap! This time her whole little body levitated from the operating table and her heart defibrillated. Although it slowly began to beat, it was barely more than a flicker. Ominous, but we had drugs in reserve to make it pump harder.

  I asked Mike to start an adrenaline infusion and told the perfusionist to cut back on pump flow to leave some blood in the heart. This was operating theatre protocol, and it’s just like the military. You make a request to a medical colleague but give orders to the technical staff. If you start giving orders to an anaesthetist they’ll tell you to piss off, and will go off and do something different.

  While Mike and the perfusionist worked together to check and optimise the blood chemistry, my gaze remained fixed on Kirsty’s pathetic little heart. The new coronary artery was fine – there was no kink in the tube and no bleeding. For the first time the left ventricle was receiving well-oxygenated blood at the same pressure as the rest of the body. But her heart still looked like an overripe plum and was barely beating at all. Moreover, the mitral valve was leaking badly. Although I heard myself telling the team to give it another half hour’s support on the pump, what I was really thinking was we’re stuffed, this heart’s had it; great operation – dead baby.

  Of course, I didn’t let the others know my thoughts. They’d salvaged so many catastrophes that they expected me to pull this one off too. But I was starting to fade. I suggested that the cameraman should stop filming for a while because nothing was going to change and asked Katsumata to come to my side of the operating table while I took a break. I removed my gown and gloves, and went to make a call in the anaesthetic room. Mike followed.

  ‘Can you repair the mitral valve?’ he asked me.

  ‘Don’t think so,’ I replied. ‘I’ll get Archer to warn the parents.’

  I slumped on a stool and picked up the phone. One of the lovely nurses put a coffee and doughnut in front of me. With her arm around my shoulder, she felt the cold sweat dripping down the nape of my neck.

  ‘I’ll get you a dry top,’ she said.

  In five minutes Archer was down from his outpatient clinic at the theatre door. He didn’t need to ask.

  ‘Thought you might have trouble. Anything I can do?’

  ‘Take a look at the echo,’ I said. ‘The repair’s fine but the ventricle’s lousy. Mitral valve’s leaking. At this rate we’re not going to get off the pump.’

  My bladder was full and I wandered off to the loo. When I got back, my brain had regained control without that distraction and I now really needed to focus. What, if anything, could I do to make things better? I was running out of ideas.

  The left ventricle was scarred, dilated and now globular – not the normal elliptical shape. This distortion had pulled open the mitral valve and prevented it from closing. As the left ventricle tried to pump blood around the body as much as half of it flowed backwards to the lungs. Heart function is always temporarily worsened during surgery, but in Kirsty’s case it seemed terminal. I’d hoped that resting the heart on the bypass machine would help it to recover. It hadn’t.

  I went back to the operating theatre, scrubbed up again and switched with Katsumata. He said nothing, but looked crestfallen – a clear message. I asked Mike to start ventilating the lungs and told the perfusionist to prepare to slowly ease off the machine. At this point Kirsty’s heart needed to take over and support the circulation, otherwise she’d die on the operating table. We all stared at the traces on the screen, hoping to see her blood pressure rise. It briefly reached half normal, but then fell away rapidly as the pump was switched off.

  ‘Shall we go back on?’ asked Katsumata.

  Watching the left ventricle flicker on the echo, the perfusionist questioned whether it was worth it. But ‘She’s had it, hasn’t she?’ was the real message from behind the drapes.

  I wasn’t yet ready to call it. Failure would mean death for the little girl and a life of torment for the parents.

  ‘Let’s go back on, give it another half hour.’

  This in itself was problematic, as a long bypass time always lessened the chance of recovery.

  Kirsty’s parents were waiting in the children’s ward – Archer had gone to warn them. When we called him back, Becky insisted on coming to the doors of the operating theatre complex with him. It’s impossible to describe how a mother feels in these circumstances. All I knew was that the prospect of her holding Kirsty’s emaciated and lifeless corpse was not far away. Should I tell her that the heart was too badly damaged, that the diagnosis should have been made months ago and that Kirsty had been let down by an overburdened system?

  In her own words, these are the very powerful thoughts that Becky recorded in her diary at the time.

  Dr Archer came to see us at hourly intervals. After around four hours I thought everything had gone well. Kirsty was to be taken off bypass and then transferred to intensive care. I popped down to the canteen to grab a sandwich but as I was making my way back one of the ward nurses was looking for me. She told me I needed to come back upstairs because Dr Archer was waiting to see us. I was really pleased and asked if the operation was done. Could we please see her? She looked very serious and said we must speak to Dr Archer. Though she was really kind and professional I guessed that something was wrong.

  Back in the room a stern faced Dr Archer sat us down. He explained that despite the best efforts of the surgical team, Kirsty’s heart would not separate from the bypass machine. The surgeons were still trying but the prospects looked bleak. We may lose her.

  Then he had to leave. By now my head was spinning. I remember feeling sort of drunk. This wasn’t the plan. If we waited patiently everything would be OK because that sort of thing only happens to other people.

  Then Dr Archer came back. He told us he was so sorry. Every option had been exhausted. He would be arranging for us to go and hold her to say goodbye. I could not bear the thought that when I saw her again she would be cold. My baby was so soft and warm. Smelt delicious, hair like velvet, hot fuzzy cheeks. I just kept thinking that my heart would break if she was limp and cold. It sounds odd but it was such a strong feeling.

  Obviously this was our darkest moment. The thought of Kirsty fighting for her life and nothing we could do. We might as well have been on the other side of the world. My frenzied brain went into overdrive. If she died they would put her on a cold slab in the mortuary. That hideously soulless place. If that happened I would stay with her until she was buried. I would fight anybody that tried to stop me. My baby girl would stay in my arms and God help anybody that tried to take her away from me.

  Those thoughts remain as clear in my head as they were on that day because I never felt so strongly about anything. We had made a really close bond with other parents on the ward. All day they had been popping in asking for news, praying for Kirsty and sharing in our hopes.

  When Dr Archer left our room no one else came in. I didn’t blame them. There was a horrible feeling of sadness. Everyone was so involved in each
other’s journey and now nobody knew what to say.

  On the very rare occasions that a child died on the operating table I always talked to the parents myself. It was something I dreaded, the very worst part of my job.

  The sliding doors to the theatre complex opened automatically onto the hospital corridor. I was immediately confronted by eyes full of grief and desperation. I remember Becky saying, ‘Please save my little girl.’ I was poleaxed and said nothing. Archer looked desolate. He’d already done the difficult job. I turned back to the sombre theatre, put on a new mask and scrubbed up again.

  Mike had finished yet another cigarette, and said, ‘Things are no better. Can we turn the pump off?’

  ‘No, I’m going to try one more thing. Turn the lungs off. Run the camera again.’

  This was my last-gasp attempt. It was something that could only be justified by invoking the laws of physics and had never been done before in a child. The tension on the wall of Kirsty’s scarred left ventricle was elevated because of the size of the cavity. From a recent conference I knew that a Brazilian surgeon had made a series of failing adult hearts smaller when a tropical infection, Chagas disease, had weakened the muscle. The operation had been attempted for other types of heart failure patients in North America but was quickly discredited and abandoned. In my view, this bold approach was Kirsty’s last hope.

  I was not going to risk stopping the heart again, so I took a glistening new scalpel and cut the beating left ventricle wide open from apex to base, just like unzipping a sleeping bag. I began in an area of scar, carefully avoiding the muscles that support the mitral valve, and the filleted heart immediately fibrillated in response to cutting. This was fine because there was no risk of it pumping air.

  Frankly I was stunned by the unexpected appearance of the inner lining of the heart. It was covered in thick, white scar tissue. To reduce the diameter of the ventricle I cut away the tissue on either side of the incision until I reached bleeding muscle, removing one third of the circumference of the chamber. In an attempt to stop the mitral valve from leaking I sewed the central point of its two leaflets together, turning it from an oval to a double orifice structure resembling a pair of spectacles. Then I simply sewed the muscle edges together with a double row of stitches to close the heart. In the end, this much smaller heart looked like a quivering black banana. Not for a moment did I think it would ever start again – and nor did my colleagues. Most of them thought I was crazy.