The tragedy and courage of first US face transplant

'Don't judge people who don't look the same as you,' says the woman whose features had to be rebuilt after she was shot by her husband
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Indy Lifestyle Online

Connie Culp would be the first to admit that her face is not a thing of beauty. On the other hand, it is a whole lot better than the one it replaced. Every face tells a story, but the one Connie's tells is more extraordinary than most.

On Tuesday, she stepped into the limelight for the first time after having what is believed to be the most extensive face transplant carried out anywhere in the world.

Five years ago, her husband, Thomas, shot her in the face at point-blank range, leaving a gaping hole where her nose and lips should have been. Surgeons repaired what was left in a series of 30 operations but she was unable to eat, drink, smell or breathe on her own – and children ran away from her in horror.

In December, a team of doctors at the Cleveland Clinic, Ohio, decided to go a stage further. In a 22-hour operation, they replaced 80 per cent of Ms Culp's face with bone, muscles, nerves, skin and blood vessels from a donor, another woman who had just died. It was the first face transplant in the US and the sixth in the world.

The result may not be perfect but Ms Culp was the first to express approval for the doctors' achievement. "I guess I'm the one you came to see," the 46-year-old said at a news conference at the clinic, adding: "I think it's more important that you focus on the donor family that made it so I could have this person's face."

Ms Culp's expression may be somewhat fixed but she can talk, smile, smell and taste her food again. According to Associated Press, her speech can be difficult to understand and her face is bloated and squarish, with the skin drooping in big folds. Doctors plan to pare it away as her circulation improves and her nerves grow, animating her new muscles.

She has discovered a new role – campaigning to change our image-obsessed culture which condemns people such as her to a life hiding in the shadows.

"When somebody has a disfigurement and doesn't look as pretty as you do, don't judge them, because you never know what happened to them," she said. "Don't judge people who don't look the same as you do. Because you never know. One day it might be all taken away."

The clinic's psychiatrist, Kathy Coffman, described how Ms Culp had confronted a woman and her child while out shopping after overhearing the child telling its mother: "You said there were no real monsters, mommy, and there's one right there." Ms Culp stopped and said: "I'm not a monster. I'm a person who was shot," and pulled out her driver's licence to show the child what she used to look like.

Until this week, no details of Ms Culp's identity or how she came to be injured had been revealed. She and her husband had run a painting and contracting business in the small town of Unionport near the border with Pennsylvania. The shooting took place outside a bar in 2004 and it was a miracle she survived. The blast shattered her nose, cheeks, the roof of her mouth and an eye. Hundreds of shotgun pellets and bone splinters were embedded in her face. She needed a tube inserted into her windpipe to breathe. Only her upper eyelids, forehead, lower lip and chin were left. After shooting her, her husband turned the gun on himself, but was not fatally injured. He was later jailed for seven years.

When Ms Culp first arrived at the Cleveland Clinic two months after the assault, her plastic surgeon, Risal Djohan, told her he was not sure if he could fix her but he would try.

In the 30 operations she then endured, doctors took parts of her ribs to make cheekbones and fashioned an upper jaw from one of her leg bones. She had countless skin grafts from her thighs. The result was a puckered, noseless cavity that still left her unable to eat solid food, breathe on her own, or smell. It was this poor result that decided the team led by surgeon Maria Siemionow, who had planned a face transplant for years, to try the radical option. She explained her rationale at the time.

"There are so many patients in their houses who are hiding from society because they are afraid to go on the streets," she said. "Our patient was called names and humiliated. She exhausted all conventional means of reconstruction and was the right patient."

The procedure was carried out on 10 December and by January Ms Culp was able to eat pizza, chicken and hamburgers for the first time in years. She loved to have cookies with a cup of coffee, Dr Siemionow added.

She was discharged two months later on 5 February and has returned for periodic follow-up care. She has suffered only one mild rejection episode that was controlled with a single dose of steroid medicines, her doctors said. She must take immune-suppressing drugs for the rest of her life but her dosage has been greatly reduced and she needs only a few pills a day. The transplant is estimated to have cost $250,000, less than the cost of the dozens of separate operations otherwise needed.

She has a son and a daughter who live nearby, and two grandsons, and has told her doctors she just wants to blend back into society. It is unlikely she will be able to – her new-found celebrity will see to that. But if people pause before judging her and those with similar disfigurements, she will consider it a victory.