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With her transplanted heart failing, 12-year-old Hannah Clark faced a terrifying choice I B Y R O B E R T K I E N E R

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Hannahs only hope was surgery that even heart surgeon Sir Magdi Yacoub had never tried

ts blue light flashing, headlights blazing, an ambulance heads down the M4 motorway hugging the fast lane at speeds of more than 100 miles per hour. Inside, Paul and Elizabeth Clark and their desperately ill daughter Hannahunaware of the drama swirling around herare speeding from Wales to the cardiac unit at Harefield Hospital, just west of London. Less than two hours ago, Paul answered his mobile phone to hear, We have a donor. It is a match. Two-year-old
P H OTO G R A P H E D BY B A R R Y M A R S D E N

Hannah is getting a chance at a new lease of life.

Four months after Hannah was

born, Elizabeth Clark cradled her tiny blonde daughter and told her GP, She doesnt sleep much at all and she screams or cries almost constantly. Dont worry, the GP told Elizabeth. Its teething problems. On another visit, he told her Hannah had a mild chest infection. But the screaming continued. A second GP examined her and explained it was nothing serious. He
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prescribed vitamin syrup. Both Elizabeth and Paul, a lorry driver who had grown up near the coal mines of south Wales, were sure there was something seriously wrong with Hannah. One weekend, after a frightening coughing attack where she could barely breathe, Paul and Elizabeth hurried to A&E at Merthyr Tydfils Prince Charles Hospital. A chest X-ray showed Hannah had dilated cardiomyopathy, a condition that results in an inflamed, enlarged and weakened heart. Cardiac specialists at Harefield Hospital in Middlesex told the Clarks that Hannah would be lucky to survive another year. They put her on the waiting list for a heart transplant. Stunned, Paul and Elizabeth took Hannah back to their small home in the Welsh mining town of Mountain Ash, where she lived with older sister Aimee. A beeper clipped securely to Pauls belt would alert the family if a heart became available. Less than six months later, one did. Somewhere in the north of England a little girl had died and her parents agreed to donate her heart to save another childs life. After their high-speed ambulance ride, Paul and Elizabeth sat in a brightly lit waiting room at Harefield Hospital and waited as heart transplant specialist Sir Magdi Yacoub operated on Hannah. Now and then a nurse would relay news: Hannah is doing fine. Things are going well. Then, five hours later, Sir Magdi came into the room, still in his scrubs, with his green surgical mask draped round his neck. The Egypt-born
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doctor told Elizabeth and Paul, We decided to leave Hannahs heart in place and attach the donor heart to hers. He told them he had inserted the donor heart into the right side of Hannahs chest and attached it to her original heart. During this rare heterotopic or piggyback transplant procedure, he merged the two hearts aortas so there would be a unified supply of blood to the body and connected the donor heart to Hannahs lungs. While her original heart would still pump some of Hannahs blood, the donor heart would do the bulk of the work. That way, said Yacoub, her original heart has a chance of recovering. Hannah was still unconscious and connected to a web of wires, lines and tubes. As they stood by Hannahs bedside, Elizabeths eyes filled with tears. She turned to Paul and said, She looks so warm, so pink!

couldnt. She dropped on to the padded floor-mat in a heap. The next week she tried again. Once more she fell to the floor, her arms aching. Each week, as other students shinned up the rope, Hannah gave it her best, struggling to get a foot higher. After school one day she told Elizabeth about the rope: I tried it but

a boy at school snatched the cap and called her cancer head, Hannah turned and called him Odd Socks. Look at you, she laughed as her class mates cheered. Youve got on one black sock and one green sock. Mister Odd Socks! Hannahs courage inspired Elizabeth and Paul, but she was facing a remorseless enemy. By the time she was 11, she

The news was bleak. Hannah might not survive, said one of the doctors
couldnt make it. After a pause she added, I will though. She kept her word. By the time she left primary school, Hannah was hoisting herself to the top of the 20-foot rope. had battled PTLD cancer three times. Each time the chemotherapy, coupled with the anti-rejection drugs she took to protect her donor heart, wracked her frail body. By the summer of 2005 doctors were warning that Hannah could not survive another bout of PTLD.

But life was ready to deal Hannah

another blow: she contracted posttransplant lymphoproliferative disease (PTLD), a rare cancer that targets the glands, blood and immune system and which might have been triggered by the anti-rejection drugs. She found herself back at Harefield, scene of her transplant operation. But this time it was for a tough regimen of chemotherapy. After the last chemo session, Elizabeth was brushing Hannahs hair in her bedroom with older sister Aimee. As she gently pulled the brush through Hannahs waist-length hair, it came out in great clumps. Aimee fought back tears. Hannah turned and said, Is that my hair? and burst into giggles. Hannah was given a wig, which she wore to school for a few days and then tossed aside in favour of a cap. When

On a rainy November morning

in 2005 Elizabeth, Paul and Hannah drove to their cardiologist in Cardiff. As heavy rain splashed across their car, they talked about what Hannahs sister Aimee, 14, and brother Daniel, eight, would like for Christmas presents. I want this Christmas to be extra special, Mum, said Hannah. Please? In Dr Obed Onuzos University Hospital examination room, Hannah removed her jumper and hopped on to the table. This will be a bit cold, Hannah, said the cardiologist as he applied gel to the girls chest and taped on electrodes. Wires led to an echo machine that would give him a cross-sectional view of the heart, showing everything from how well it was pumping to the
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As Hannah grew up it became

clear that, like her rugged mining forefathers, she was a fighter able to cope with just about any obstacle. Her drugweakened immune system made her especially vulnerable. Over the years she battled septicaemia, pneumonia and a collapsed lung. One day in her primary schools weekly PE class, students were asked to climb a rope to the gymnasium ceiling. Hannahweakened by the powerful anti-rejection drugs she took daily could barely manage to pull herself a few feet off the ground. The fourfoot, five-and-a-half-stone seven-yearold tried to hoist herself higher but

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condition of each valve and chamber. Or, in Hannah Clarks case, how well both her hearts were pumping. Dr Onuzo grew concerned. Theres a problem, he told Paul and Elizabeth. Two days later they were in London, being briefed at Great Ormond Street Hospital for Children. The news was bleak: Hannahs donor heart had badly deteriorated. Even if her original heart,

UK and possibly in the world. Even if the donor heart could be separated without fatal damage to Hannahs original heart, the trauma of the procedure might be too much for a small body wracked by years of chemotherapy, anti-rejection drugs and severe infections. Elizabeth and Paul decided to leave the final decision up to Hannah. On a Christmas shopping trip in

Hannahs courage suddenly fails her. Daddy, she says, I want to go home
now stronger, could take over again, to remove the donor heart was unprecedented. One of the doctors said gently: Your daughter might not survive. Paul rose from his chair and left the room. Walking through the hospital corridors, he swore to himself, Im not going to lose my child. He hugged Elizabeth. I know Sir Magdi can do it, he told her. Besides, he is our only chance. By now Sir Magdi had retired from the NHS, but the doctors were keen to consult him. Surgeon Victor Tsang called him and explained the case: We have to take her off the immunosuppressants. And we have to take the donor heart out. Sir Magdi paused. Then: Yes, Victor. And Id be pleased to do it with you. Cardiff s Capitol Shopping Centre, Paul, Elizabeth, Aimee and Daniel were laughing as they watched Hannah skipping through the crowd. Paul, look at Hannah, said Elizabeth. Shes singing! Laughing and skipping, the 12-yearold trilled, Last Christmas you gave me your heart, but the very next day you gave it away. Hannah explained, Its a George Michael song. But now its my song because its happening to me! The Clarks had their answer.
C O U R T E SY O F G R E AT O R M O N D ST R E E T H O S P I TA L

Sir Magdi (top left) and Victor Tsang; and during the operation

At Great Ormond Street Hospital

for Children, Hannah and Paul are walking hand in hand down the long, brightly lit corridor to the pre-op room. It is just after 11am on February 20 last year and there are just 30 minutes before the operation is due to begin. As they enter the pre-op room, Hannah sees that a green-gowned anaesthetist and nurses are waiting for her. The reality of whats about to happen stops her dead in her tracks and all her

With her donor heart removed,

Hannah could be taken off the antirejection drugs and the PTLD would be much less likely to return. But the odds were grim. It would be the first operation of its kind, certainly in the
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courage drains from her. Daddy... She squeezes Pauls hand tight. ...I want to go home. Fighting tears, Paul bends down and says quietly: I am not going to push you, sweetheart. But we are doing the right thing. He wipes at her tears with his shirtsleeve. If you dont want this, well go home. After a moment, Hannah steps forward again. Paul stands beside her as she lies on a white-sheeted trolley. The anaesthetist begins to lower a breathing mask over her face. Suddenly panicked, Hannah blocks it with her hand and reaches out to Paul. Its OK, Hannah, Paul tells her. The

anaesthetist points to his watch. Paul tells him, Let me do it. Paul cradles her with one arm and slowly moves the mask to her face. Are you ready? he asks. Yes, Daddy, she answers. The anaesthetist takes over and she slips into unconsciousness. As Hannah is wheeled away, Elizabeth is seized with fear. What do we do if we never see her again? If she dies, I will die too! Paul wraps an arm round her and they climb the stairs to a waiting room to begin their long vigil. In the theatre, seven surgeons and staffers are clustered round Hannahs slight figure. The only sound is the repeated squish/thock of a ventilator pushing air into Hannahs lungs. A battery of electronic screens monitors her vital signs. Slowly her body temperature is lowered to 30C. Sir Magdi Yacoub, wearing green
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surgeons scrubs and 3-power magnifying glasses with a built-in light, stands on one side of Hannah. Directly opposite him, Victor Tsang takes up a scalpel and begins to cut into Hannahs chest. As he cuts, drops of blood seep out of the nine-inch-long incision and roll on to the green sheeting. To crack her sternum open, he takes a jigsawlike cutter and flips it on. Tiny chips of bone fly up as the saw does its work. Retractors are inserted and Hannahs chest is gently pulled open. Sir Magdi looks inside. He has performed over 2,500 heart transplants but he has never seen a sight like this. The two hearts have grown together into one reddish-blue mass. It will test all the skills of this most experienced of surgeons to identify, follow and separate the layers of fused tissue. A wrong move could fatally weaken the remaining heart. How do you know where to cut? asks one of
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the assisting surgeons. Sir Magdi is too lost in thought to reply. He peers down through the magnifying lenses. Slowly, he mutters to himself, searching for familiar tissue formations and cardiac boundaries. In the waiting room, Paul and Elizabeth finish second Back home cups of coffee. They and on the have bought a teddy road to bear for Hannah in recovery the hospital gift shop. To ease the tension, they set their minds to deciding what to call him. They build a name using the first letter of doctors involved in her treatment. Theres Y for Yacoub and O for Onuzo, says Elizabeth. They decide on Bonsey and plan to put it in Hannahs bed in the recovery unit, so it will be the first thing she sees when she wakes. Elizabeth picks up a pen to inscribe the bears name tag. But her hand is shaking so much she cant write.

Working from both sides of

Hannahs chest, Yacoub and Tsang continue to dissect layer after layer of the donor heart. Ravaged by rejection, it is half its original size. Piece by piece, the surgeons begin to pare the organ away, like sculptors chipping away stone. Hannahs heart is gradually exposed. There is no sign of the cardiomyopathy that caused it to fail ten years ago. By taking on most of the

work, the donor heart has allowed Hannahs heart to heal. Having worked its miracle, it now lies in a stainless steel bowl and there is no going back. If Hannahs heart cant take the full load, her life will be over. Before they can turn off the machine and restart Hannahs heart, the surgeons must repair the gaping aorta and reconnect Hannahs heart to her lungs. Working seamlessly together, they stitch the aorta together and clamp, snip and suture the coronary arteries and veins. Satisfied, they prepare to remove the clamps that will allow blood to fill Hannahs heart once more. Sometimes a stopped heart will restart spontaneously as the blood flows in. More often it needs a shock from a defibrillator to begin beating again. But sometimes that, too, can fail. In the waiting room, a sixth sense tells Elizabeth that Hannah has reached a crucial moment. I cant wait any longer, she tells Paul. Im going to find out whats happening. In the operating theatre, Sir Magdi inserts the probe of a defibrillator into the hearts right ventricle. A 100-volt charge of electricity surges into the fist-sized organ. It contracts. There is a single pop from the cardiac monitor.

By now Elizabeth has left the waiting room and is descending the stairs to the operating floor. As she looks down the stairwell, she pauses. A man in scrubs is climbing towards her. It is Victor Tsang. Hannahs fine, he says. Then he breaks into a broad grin. Shes OK. Her heart is working fine. Hannahs monitor beats triumphantly as she is wheeled to the recovery room and her rendezvous with Bonsey.

It is six days later and Hannah is

well enough to return home. In her bedroom she leafs through the diary where she has confided her thoughts for the past year and begins to tear out pages. One reads, I hope I will be here for my next birthday. Another: I dont want to die and never see Mum, Dad, Aimee and Daniel again. Why are you throwing those away? asks Elizabeth. I dont need them, says Hannah. Im not going anywhere. She breaks into a smile brimming with life. According to Elizabeth, Hannah has now spurted up about five inches. Complications from her anti-rejection drugs have gone and her PTLD cancer has failed to reappear.

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