In one way or another, everyone there was dissatisfied with his or her face. When I visited the family at the Big Mac House, as Robb calls it, Katie was almost always in a recliner, tilted back and covered in fleece blankets. Katie usually listened passively to the conversation but sometimes interjected a comment or a joke, giving me a glimpse of the funny Katie her family frequently described.
One day we were talking about religion, which is central to their lives.
Where Alesia is emotional, Robb tends toward intellectual discourse. He has a bushy beard that enhances his sagelike manner, and when Alesia is fired up, he gazes at her with a tender smile. That day Alesia was telling me about her extremely conservative Christian upbringing. This was news to Alesia and Robb, who laughed in the way of parents who figure, What can you do? One evening Alesia told me their situation still felt unreal. She had never worried about Katie getting into trouble.
Katie was sensitive and had a melancholy streak, yes, but she also had a snarky sense of humor. What clues had she missed? She clung to one thing that Kathy Coffman, a clinic psychiatrist, had told her. Five minutes later, or five minutes earlier, and Katie might not have grabbed the rifle. As recently as , the face Katie called Shrek was the best that even the most skilled reconstructive plastic surgeons could do for a patient as severely injured as she was.
Katie would have lived the rest of her life concealing what she could of her face with surgical masks and scarves, hearing the startled whispers of strangers when she went out in public, and struggling to speak and eat. But it was a scientist at the Cleveland Clinic who pioneered the procedure by conducting years of research to demonstrate that faces, like hearts and hands, could be transplanted.
Siemionow, who came to the clinic in , was the first in the world to win official institutional approval to do the groundbreaking surgery on human subjects in Four years later, a team of surgeons at the clinic, including Siemionow, completed the first face transplant in the United States. While surgeons work to remove the donor's face in one operating room, surgeons in an adjoining one map out which parts of Katie's face they plan to remove. Now at the University of Illinois at Chicago, Siemionow told me she first thought about transplanting a face in , during a charity mission to Mexico.
Doctors had been transplanting internal organs since the first successful kidney transplant in The end of the 20th century brought vascularized composite allotransplantation—the term for transplantation of faces, hands, and other parts of the body that are not solid organs.
But the notion that faces could be transplanted remained, for many, far-fetched. Most in the medical world scoffed, Gastman told me, but Siemionow carried on, conducting hundreds of experiments. She tested surgical techniques and suture patterns in anastomosis—the joining of two vessels or nerves—and developed novel immunosuppressive strategies to prevent rejection of the complex variety of tissues that make up the face. She was the first to report successfully transplanting an animal face when she attached a new face to a rat.
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The rats were startling to look at, with patchwork faces of light and dark fur. As Siemionow was doing her research, the idea of face transplants was beginning to gain acceptance. Nevertheless, face transplants were likely the future, they declared, and conceivably could also become a duty for surgeons treating severely disfigured patients. Ethicists weighed in, many arguing that face transplants, like hand transplants, were not lifesaving and would expose patients to too many severe risks just to make their lives easier.
After all, no one sees a transplanted heart, even the patient herself. She was finally getting a new face. It had been more than three years since her injury, more than a year since her name had been added to the waiting list kept by the United Network for Organ Sharing, a contractor for the U. Department of Health and Human Services.
Gastman told Katie she was doing this not just for herself but also for others like her in the future. But the American Society for Reconstructive Transplantation has paved the way for insurance payments by proposing guidelines for determining medical necessity. It put transplants and other innovative research into regenerating tissue and bone, as well as new immunosuppressive therapies, on a fast track. A paper published in reported that 4, service members in the wars in Iraq and Afghanistan sustained injuries to their faces, about 50 considered catastrophic.
She told me they decided not to go through with it. They want to be deployed. At 21, with a face severely wounded by ballistic trauma, Katie was the closest the Pentagon might ever come to a stand-in for its wounded warriors. But before Katie could become a voluntary human research subject, Gastman, Papay, and others at the clinic spent many hours explaining to the Stubblefields what a new face would mean for Katie.
Restoring function—the ability to eat, to speak, to breathe through the nose, to blink—is far more important than looks, Papay told me. That gave me an opening to bring up an awkward subject. Their faces look a bit frozen, masklike, and slightly off-kilter.
And so they look presentable in public, but do they look like they did before? They look better than their disfigurement, but to what degree is so variable. Managing expectations about how they will look is one of the biggest challenges for the team, Papay said. The transplant, performed by a team in Paris headed by Laurent Lantieri, was successful.
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The man looked good. But about three years after the surgery, he killed himself. Lantieri has voiced the opinion in conferences that he would not do another face transplant on somebody that was suicidal as a cause. That brought us to Katie. One of the biggest is the potential for rejection. Faces are riskier than solid-organ transplants since they involve many kinds of tissue, including muscles, nerves, blood vessels, bones, and skin.
Katie would have to make a lifelong commitment to taking powerful immunosuppressive drugs, which would also add to the risks, making her far more vulnerable to infections and diseases, especially lymphomas, other cancers, and diabetes. In at a conference in Paris, Coffman heard a member of a prominent face transplant team call for a moratorium. Patients were having more difficulty with antirejection medication than expected and were requiring more follow-up surgery. The mortality rate was worrisome as well: Out of 36 transplants at the time, six patients had died.
When Coffman returned, she suggested that Katie might want to wait five years. At a.
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For the final time, Gastman went step by step through a typed checklist fastened to a whiteboard. The donor was wheeled into OR about 10 minutes later and transferred to an operating table. A ventilator delivered oxygen through a face mask to keep her organs viable. She had smooth, tawny skin, a cute nose, and dark hair. The face surgeons go first. For the next 16 hours, three to four surgeons, all wearing surgical loupes—glasses fitted with magnifying scopes—would bend over the donor like jewelers examining a precious gem.
Around them, residents watched each move, transfixed, some standing on stools to get a better view. First the surgeons removed her eyes for cornea recovery. Then they began the long work of isolating and delicately dissecting cranial nerve VII. The facial nerve emerges on each side of the face from the brain stem, travels to the front of the ear, and then divides into five branches, which lead to the scalp and forehead, eyelids, cheeks, lips, and neck. It has both motor fibers, controlling the muscles of facial expression, and sensory fibers, providing a sense of taste to the tongue and serving glands that allow us to salivate and cry.
Next they turned to what Papay called the bony cuts. He cut the entire upper jaw and part of the lower one to transfer to Katie, most of the cheekbones, part of the frontal bone that overlies the sinuses, and the orbital floors and lacrimal bones near the eye sockets. Where the bone was visible, he employed a variety of saws, including one that uses high-frequency ultrasound. Where the bone was not exposed, he used an osteotome, which resembles a chisel. Finally they turned to the blood vessels, which are done last to limit the time the face is without a blood supply.
At noon, doctors wheeled her into the adjoining OR After the anesthesia put Katie to sleep, Gastman drew lines on her face to mark the cuts and then made the first incision, also a tracheostomy. Then he and two other surgeons began dismantling most of the reconstructive work Gastman had done on Katie in the previous two years. Residents crowded around this surgical table too. Hours went by.
Monitors beeped steadily. The surgeons spoke quietly as they worked. Nurses were in constant motion, handling instruments, checking monitors. In OR, it was a. Papay, with the face on the tray, walked into OR, where doctors placed the face on Katie. Immediately they began to connect it to her blood vessels. The face blushed. When they finished the other side and unclamped, the whole face turned perfectly pink.
Then they turned to connecting the nerves, a bundle of fibers surrounded by a sheath.
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The specially trained microsurgeons stitched the ends of the sheaths together with sutures the size of a strand of hair, trying not to damage the very, very fine fibers inside. They sutured only the motor nerves, leaving the sensory nerves to connect on their own.
Yet the patient regained a great deal of her sensory function.