A face fit for Jacqui: The extraordinary story of a woman hoping for the first full transplant

The London surgeon trying to become the first in the world to swap a whole face calls her his inspiration. She is exactly the sort of person he wants to help. By Cole Moreton
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Indy Lifestyle Online

Sometimes when she sleeps, Jacqueline Saburido is a beautiful young woman again. She is dancing and partying with her friends as she did that night at a party in Austin, Texas, in September 1999. The 20-year-old language student from Venezuela danced salsa and merengue with her fellow students. It was a happy time, just like being back home.

She caught a lift in the early hours of the morning, sitting in the front passenger seat of a little Oldsmobile. When a 4x4 travelling towards them in the darkness swerved across the road she thought, "We're going to crash."

The driver of the truck, 18-year-old Reggie Stephey, had been drinking beer. He walked away with minor injuries and two seven-year sentences for intoxication and manslaughter. The driver of the car was dead, as was one of Jacqui's friends. She herself could not escape as its cloth interior caught fire. Horrified para-medics watched as the flames enveloped her, raging intensely for 45 seconds at least. Afterwards, as her blackened body steamed with the water from fire hoses, one of them said, "Thank God she's dead."

But Jacqui was not dead. She had third-degree burns on 60 per cent of her body, but was somehow still alive. The burns unit at the University of Texas saved her from organ failure, but they could not save her parents from the shock of seeing their daughter wrapped in gauze, her skin like dry leather.

"Rosalita, prepare yourself," said Amadeo Saburido to his wife, according to the family's official website. "Our daughter is like a monster."

The family has a website because this is not just a story about a terrible thing that happened to a young, feisty woman. It is also about how that woman managed to remain herself, despite losing her fingers and her facial features and entering a world of continual pain. Jacqui and her father now live in Miami to be close to the doctors who are working to give her back more sight and the use of her hands. She is also hoping to become the first person in the world to receive a full face transplant.

Peter Butler, the surgeon whose team is waiting for final ethical approval to attempt such an operation at the Royal Free Hospital in London, has said that Jacqui wrote to him asking for help. Her case is one of those that drive him on, he has said. "She is exactly the sort of person I really would like to help, if it were possible."

It will not be, this time. Mr Butler's team will almost certainly have to choose someone from the British Isles, since the NHS system is being used and follow-up will be crucial. But Jacqui has been interviewed by the head of a team in Louisville, Kentucky, that is also hoping to carry out the first operation, and psychologists there have tested her at length. When they first told her it was a possibility she said, "I want it! Right now!" She explained later, "Nobody wants to be ugly, do they? And for me every day is hard, because whenever I see a beautiful face, or soft skin, I remember what I had."

The psychologists are looking for someone who has adapted well to the trauma of being disfigured and the many operations that follow, because that indicates they will be better able to cope with a new face - not their original one, or its highly scarred replacement, but a third.

Whoever is the first patient will not look like the donor, Mr Butler has insisted. "People thinking about the donor ask me whether they will suddenly see the face of their loved one coming down the street towards them one day. The answer is no. We get 80 or 90 per cent of our facial features from the bones."

Specialists have been able to rebuild the eyelid that was burned away from Jacqui's face and give her sight in her left eye with a cornea transplant. She has had 50 operations so far, and expects to have many more. Working eyelids would enable her to sleep without a goggle on one eye. She sleeps poorly, as her father - who has been her constant companion - wakes her several times a night to drop artificial tears into her eyes. She must also wear a mask, and a body suit to protect her skin from scarring. She has taught herself to type with what is left of her hands. Her skin feels tight, according to David Hafetz, a reporter with the Austin American-Statesman who has written the life story posted on her website. But the fire did not damage her feet. They are as they were, and she uses them instead of her missing hands, to stroke a soft blanket, or test the heat of water in a shower.

Mr Hafetz writes: "At a distance Jacqui looks old. Up close, ageless. She has a baggy neck and thin crumpled lips. Her cheeks are splotchy and rough in places, smooth in others. Where her right ear should be, she has a slender crescent of cartilage around a pea-sized black hole. On the left side, she has only a hole. Her nostrils are ragged, torn. A flap of skin hides her left eye. For more than two years the eyeball floated naked in the socket, mostly blind but perpetually staring behind a clear plastic goggle. Her right eye sees behind a veil of scar."

Jacqui spends much of her time indoors at the computer, emailing friends and the huge number of people who contact her from around the world. But as she gets stronger she is far from afraid of going out - using one post on her website to rail against a nightclub in Caracas that would not let her enter when she visited with her friends because she was considered to be "in fragile health". The decision infringed her human rights, she wrote: "Am I not a human being that has the right to go out and have some fun after the 50 surgeries I have to endure? Was it not enough having to go out and dealing with everybody looking at me?"

And she went on: "If it had not been for my strength, my determination and my faith in God that nurtures me every day, I would have been depressed, crying every day without wanting to get out of my house, or maybe I could have wanted to kill myself after the great humiliation I suffered. But that was not the case! Because I know how much I am worth and nothing or nobody is going to stop me from making my rights count and from continuing with the great mission that God has for me and for which he allowed me to stay in this planet."

That mission is to stop other people suffering for the same reason. Jacqui has allowed herself to become the subject of harrowing campaigns against drink-driving and made an extraordinary impact across America by appearing in a television commercial for the cause, holding up a picture of herself as she was and speaking while slowly lowering it to reveal herself as she is now. When the latest video was launch last month, she was quoted as saying: "One doesn't know what's worse - to die or to be left in this condition. There are times when I wonder why was I left like this? Why didn't I die? Why did I remain here?"

But most of the time that is not her tone. "I have discovered over the past five years that happiness comes from inside," she told a British reporter. "I have found people love me for who I am and they don't care how I look. I have discovered a spiritual side of myself that I did not know very well before. I have more value for my friends and family. It has made me reassess my views about physical beauty." Not that it has made her stop wanting the operation. "I would like it if people didn't stare at me, and little kids didn't make comments."

Her reservations about having a transplant are mainly to do with the drugs she would have to take afterwards, to stop her body rejecting the face. They would make cancer more likely and shorten her life. "I would maybe be willing to lose five years. But if someone said to me that I could have my looks back as they were, and marry and have kids, but I would die when I was 50 years old, I would not accept the offer. Despite how I look, I still feel good sometimes."

So having a face transplant is not clear cut, even for her. Jacqui Saburido would rather live life on her own terms, whatever it throws at her. Recently there was another cruel twist in the tale when she posted this message on her website: "Hello everyone," it said. "I need to ask a favour from all and each one of you. I've survived because God wanted me to, because the love of all of you and your constant prayers. Now I'd like to ask you to pray for my mom. She's got bone cancer and we'll be fighting against it ..." She went on, with typical defiance: "You've never failed me... You have always supported me... I'm sure God will listen to us... Thank you very much!!! From the bottom of my heart!!! Let's go to work!!!"

SURGICAL FACTS

38 AGE OF Isabelle Dinoire, the French woman who became the first to have the pioneering surgery after injuries inflicted by her dog

$1m ALLEGEDLY PAID to Ms Dinoire for the book rights, a documentary and a feature film telling her story

15 THE NUMBER of hours the first, partial facial transplant operation lasted

1998 THE YEAR surgeon Jean Michel Dubernard, who led the face- transplant surgery, gained notoriety for transplanting a hand

31 PATIENTS CURRENTLY being reviewed as possible candidates for the first full-face transplant

18 AGE OF the Irish burns victim who is one of the potential candidates

1869 THE YEAR that skin grafts were first used in surgical procedures

30-40% THE RISK of rejection three to five years after normal transplant surgery

£25,000 COST OF carrying out a facial transplant procedure

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