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Emily’s Incredible Journey

By David Greenwald
Photos by Ann Johansson

Ten weeks after surgeons at UCLA gave her a new right hand, it feels a little bizarre to Emily Fennell that she lived for nearly five years without one.

"It's like a weird interval in my life," the 26-year-old woman from Yuba City, California, says, taking a break from five hours of daily therapy at the UCLA Rehabilitation Center. "I had two hands for 21 years, then I lost one for 4-1/2 years, and now I have a hand again. Did I really not have a hand for those years? It's kind of surreal."

MedMag-Summer11-Emily in RehabThe 14-1/2-hour operation – a "surgical tour de force," in the words of Ronald W. Busuttil, M.D., Ph.D., executive chair of the UCLA Department of Surgery and a groundbreaking liver-transplant surgeon – took place at Ronald Reagan UCLA Medical Center on March 4-5, 2011. Beginning at one minute before midnight and ending at 2:30 p.m. the next day, the marathon surgery transplanted a donor hand to replace the one Emily lost after a car crash in 2006. It was the first hand transplant performed in the Western United States, and the first by the new UCLA Hand Transplant Program, which officially launched in February 2011. Emily was on the donor list a remarkably brief 16 days before an appropriate match was found.

Emily still has a long way to go before she regains sensation and the fullest possible use of her new hand – perhaps up to 18 months or more – but she is working hard toward that goal. "Hand therapy keeps me very busy," she says in the rehab center, where on this May afternoon she is dressed in a bright yellow sweatshirt with UCLA emblazoned across the front. "It's like going to work every day, going to work for my hand."

Her rehabilitation began almost immediately after the surgery with rounds of occupational therapy to help her gain strength and dexterity in the new hand. Her exercises include gripping, lifting, moving and stacking small objects such as foam and wooden blocks, balls and cones. She strings beads, and there also are resistance exercises to help strengthen the muscles in her right arm that had not been used in the years she was without a hand. An occupational therapist stretches and manipulates the new limb to keep it flexible, particularly around the incision line, wrist and fingers.

Apart from some episodes of nausea and mild rejection – which is not atypical for a transplant patient – the pace of her improvement has delighted Emily's physicians. "She is making excellent progress in hand therapy," says Kodi Azari, M.D., surgical director of the UCLA Hand Transplant Program and the lead surgeon for the operation. "Psychologically, she has adapted to her new hand, and the nerves are showing evidence of rapid regeneration."

Emily already has regained some sensation up the wrist area of her new hand. Electrical stimulation also helps to train the muscles and nerves and encourage growth of muscle tissue. It was during one "stim" session that Emily suddenly complained of an uncomfortable feeling that moved through her right wrist and into the thumb of her new hand. While the sensation may have been unpleasant to Emily, it was a clear sign that the nerves in her new hand were regenerating. That was news that caused Dr. Azari to spontaneously break into what Emily calls, with a broad smile and playful spark in her blue eyes, "Dr. Azari's happy dance."

Even with the prominent zig-zag scar that encircles her forearm, it can be difficult to tell that Emily's new right hand is not her original; it could appear that her own arm was repaired following a bad accident. The match of the donor hand is nearly perfect. "It's crazy how much it looks like my hand, and I think that helps me to associate it as mine," Emily says, holding her arm up to show off the new hand. The fingers are long and thin, like the fingers on her own left hand, and the nails are neatly trimmed. "I've MedMag-Summer11-Emily in Rehabhad to cut them four times so far," she says. "They're growing better than my own nails." 

For most of the last century, the concept that the hand of a deceased person could be grafted onto the arm of a living recipient existed largely within the realm of science fiction as the subject of novellas and movies usually involving  operations that in one way or another go tragically wrong. When it did emerge in the century's final decade as a viable medical procedure, it was not without controversy.

In an article published in the Los Angeles Times shortly after Emily's surgery, Warren C. Breidenbach, M.D., who performed the first U.S. transplant in Louisville, Kentucky, in 1999, described the response to the first-ever hand transplant, in France in 1998. "There was a lot of fury, and there was a lot of concern about it," he said. "We were told it was unethical and it shouldn't be done."

The procedure has, however, endured the test of time, and now "there is no longer debate that this procedure has a high potential for long-term survival of the hand," Dr. Breidenbach concluded. The latest statistics show a five-year success rate of about 92 percent to 95 percent, he said, and most recipients can feel sensation in their new hands and can write, pick up a glass and button a shirt.

The procedure still is considered experimental, and Emily's operation and those that will follow at UCLA are part of a clinical trial "not only to offer the proof of principle of the surgical procedures, but also to study the safety and effectiveness of the immunosuppressive drugs and to find that balance of immunosuppression to prevent rejection while decreasing the risk of side effects," says Sue McDiarmid, M.D., medical director for the program. "We've been a major transplant center for more than 25 years, and this is a new frontier in transplantation that we thought we should really explore. We have so much expertise here in the surgical techniques and in transplant medicine. We've brought the two sides together and formed a fantastic team."

Hand transplantation differs from other transplants in several significant ways, not the least of which is the fact that a hand transplant is not life-saving. Many people who have lost a limb are able to get along fine with a prosthetic hand. But others, like Emily, find that a prosthetic limb is too uncomfortable or cumbersome. Still, potential patients must be fully informed and aware of the complications of life-long immunosuppression and have to weigh these risks against their perception of how a new hand will enhance their life.
"This operation is not for everyone," Dr. Azari says. "It is designed for the person who has recovered from the initial trauma of the amputation, both physically and psychologically, and has tried a prosthetic device for at least six months."

For Emily, who had been exploring her options for many months and was a candidate for transplantation at another center before she heard about UCLA's new program, the choice was clear: "I looked into all the immunosuppressive drugs. I discussed it with my family. We examined this very extensively before I made the decision. For me, to be made whole again was more important than the possible negative outcomes," she says. "The benefits outweighed the risks."

The process of screening candidates is rigorous. UCLA interviewed about 50 potential candidates before selecting Emily as the first to receive a transplant.

"First of all, we have to be sure that the candidate for this procedure is very healthy," Dr. McDiarmid explains. "We are going to subject them to immunosuppressive drugs that can potentially have serious side effects. We don't want to give that to someone who may have a condition that will open them more to a negative result."

In addition to the medical screening, there is a significant psychological component, and members of the hand-transplant team include psychiatrists. In addition to being certain there is no depression or post-traumatic issue stemming from the accident that took their hand, "the patient's motivation for wanting to go through this kind of a surgical procedure and the aftercare has to be very clearly defined," Dr. McDiarmid says. "The rehabilitation is lengthy and uncomfortable, and they need to understand and be fully committed to that. It's not a walk in the park."

And patients must commit to a life-long regimen of anti-rejection medication. "They can't decide they want to skip a day or skip a week, or that it's ok to run out. They've got to be on it every single day for the rest of their lives," Dr. McDiarmid says. "That's a heavy commitment to make for something that, while it will enhance your life, is not going to save it.

"These are things that have to be very well evaluated so that we don't make an error and put someone through a very big procedure only to find that they're not in the right place psychologically to deal with it."

When the team first met Emily, "we found her to be the absolute ideal candidate in every regard," Dr. Azari says. "She is young. She is healthy. She has this depth of understanding not only about the procedure but about herself that was not seen in other candidates."

Emily's transplant was the 13th performed in the United States, and more than 40 have been done worldwide since that first successful procedure in France in 1998. So while hand transplantation is not brand new, it still attracts a great deal of attention. News of Emily's surgery was carried by newspapers and TV outlets across the country. The Today Show ran a national segment that included a live interview with Emily and Dr. Azari.

Emily was perhaps caught a little off guard by all the attention. She says, "People I know in Idaho are like, 'You're on the front page of our newspaper,' and I'd go, 'I am? Why?'"

At a press conference two weeks after the transplant, on April 19, at which Emily was first publically introduced, she took a moment to thank the family of the donor. "For the gift they have given me, I am truly blessed," she said. (At the same time as Emily was receiving her new hand, Dr. Busuttil, operating in an O.R. directly across the hall, was transplanting a portion of the same donor's liver into a 10-year-old girl.)

On what turns out to be the day before UCLA calls to tell her there is a donor, Emily sits and talks in the backyard of the home that she and her 6-year-old daughter share with her father, Danny Fennell, in Yuba City, an agricultural community about 45 miles north of Sacramento.

At the time of her accident, Emily was a 21-year-old single mom living with her mother, Kim Herman, in Ventura County. She was attending community college, working as an event coordinator at a local country club and caring for her child. The accident occurred while driving home following a party in Los Angeles.

"I don't really remember the accident itself," she says. "I vaguely remember the moments leading up to it; a car pulled in front of us and my friend tried to swerve at the last minute. When she swerved, the car went off balance and then it clipped the corner of the other car. The impact caused us to flip over."

MedMag-Summer11-Emily FennellAs best as anyone can figure, Emily, in the front passenger seat, tried to brace herself as the car started to roll. The sunroof may have been slightly open and the impact with the other car caused it to shatter. Instead of her right hand bracing on the ceiling of the car, it went out the sunroof and was then trapped against the pavement as the car skidded upside down for about 10 feet before hitting a curb, which righted the car just before it smashed into a wall.

Of the four young women in the car, Emily was the only one seriously injured. Her right hand was obliterated; the palm was about all that was left, really nothing more than a lacerated flap of skin, which she had the presence of mind to fold back over the devastated remains. "It just made sense to me to do that to try to stop the bleeding," she says. "I don't know if it helped but that's what I instinctively did."

Her friend who had been driving the car pulled Emily out and laid her down on the side of the road. A Good Samaritan stopped and called 9-1-1, and also Emily's mother. The ambulance rushed Emily to UCLA.

Emily was too disoriented to fully comprehend what was happening at the hospital, but her mother got there shortly after she arrived. Kim was told by the physicians who examined Emily that there was little that could be done. If they tried to salvage what was left of Emily's hand, she would be left with little more than an unusable and constantly painful claw. Kim had to make the wrenching decision about whether or not to amputate.

It wasn't until the next day when Emily awoke from surgery that she learned her hand was gone.

"I was still really groggy when I woke up," Emily says. "I remember looking down and seeing a big bandage, and I didn't know if I had a hand in that bandage or not."

Her mother told her that there wasn't anything that could have been done to save her hand and they'd had to cut it off.

"I don't remember how I reacted at that point," Emily says. "I honestly don't remember."

When she was finally able to process what had happened, Emily's first thought was: "This sucks."

"Honestly, what else can you think at that point," she says. "And I remember thinking that it's going to be hard. How am I going to take care of my daughter? She was still in diapers at the time. I remember thinking that it was going to be hard but I could get past it.  Yes, this sucks, but I'm alive and life goes on."

When Emily first began exploring the possibility of a hand transplant, which another amputee had told her about, her mother's response surprised her.

"I have to say, I was not thrilled," says Kim.

In her view, Emily had adapted well to having one hand – she had learned to care for herself and her child, and could type with one hand and hold down a job – and she didn't believe the potential benefit of enhanced function was worth the risk from a lifetime of immunosuppressive medication. "From what I observed, what I saw, she was doing very well. I was very concerned about the possibility of watching my daughter's health diminish for a hand that, in my perception at the time, wasn't necessary because I thought she was doing fine," Kim says. Her mother's stance upset Emily. They sat down to talk about it. "I said, 'Ok, Em, you need to tell me why this is so important to you, because I don't see it. I don't understand," Kim recalls.

So Emily began describing to her mother, "in ways that I hadn't heard her talk before," what her life was like with one hand.

"She said, 'Mom, what do you think about when you are clearing the table after dinner?' I said I don't think about anything. I think about doing the next task. She said, 'But you don't think about how you are going to pick up the plate or how you are going to pick up the bowl and the glass all at the same time. And you don't think about how you are going to put them all in the dishwasher or the sink to wash them.'

"I said, 'No, I don't think about that. I don't give that any thought at all.' Then she asked, 'What do you think about when you're eating?' I said, 'How it tastes.' She says, 'I'm thinking about how am I going to get a spoonful of rice on my fork without another hand to push it on there? I'm thinking about how am I going to cut up my meat? I'm thinking about what I can and can't order in a restaurant.'

MedMag-Summer11-Emily brushes her hair"Emily has to think about everything that she does," Kim says. "Everything involves a thought process, where I don't think about these things at all. I wouldn't have to think about catching a ball if someone tosses one to me. She has to think about it."

What she observed on the outside had appeared just fine to Kim. What her daughter was feeling on the inside, however, was something else. So Kim and Emily began researching together, looking up the different programs in the United States (there were three others before UCLA's) and reading about their protocols.

"And as we did that, as I learned more about what was being done and I came to more fully understand what my daughter felt her limitations were, my heart opened up to the idea," Kim says. "I am still concerned, but I am more supportive now because I understand it better. For her to do this would be something that was going to provide her with a fuller life and give her back a big part of herself."

Emily was at work when her cell phone rang at around 11:30 a.m. on March 4. UCLA was on the line. A possible donor had been identified in San Diego by Lifesharing, a non-profit organ- and tissue-recovery organization for San Diego and Imperial Counties.

"She was nervous, rattled and excited," her mother recalls. "It was, like, here we are at the start of a new part of this journey."

Six hours after getting the call, Emily and one of her two sisters, Andrea, were landing on board a commercial jet (the stand-by flight had been prearranged with the airline) at Bob Hope Airport in Burbank, where a car was waiting to bring them to Ronald Reagan UCLA Medical Center. After several more hours of pre-surgical preparation, she was wheeled into the operating room.

In this nascent field of transplantation, finding a donor for a hand is not like finding a donor for an organ like a heart or kidney. For one thing, a hand is external; it will be seen by the recipient for the rest of his or her life, so in addition to being a good tissue match, it needs to be a good cosmetic match.

"The size and shape has to be the same. The color has to be similar. The hair pattern has to be similar," Dr. Azari says. "You couldn't put my gorilla hand on a woman – it wouldn't work. So these are all factors that have to be taken into consideration."

That fact presented new challenges to the organ-procurement agency and its team, says Jill Stinbring, director of clinical services for Lifesharing. "In conversations with organ-donor families, we talk about the life-saving benefits of the donation – how their loved one's heart or liver will save another person's life. We couldn't do that in this context," she says. "We talked more about being able to provide somebody with an opportunity to go back to work or to maximize their life potential, to be able to better care for their child. We just had to use different words in our conversation."

Establishing an appropriate procedure for approaching donor families was essential for the program, Dr. McDiarmid says.

"It was critical that we develop a protocol that left no stone unturned to provide the absolute best in procurement medicine, in science, and also with a focus on the compassion that would be needed to ask a donor MedMag-Summer11-Emily in rehabfamily to donate a visible, intimate part of their loved one's body," she said.

The team went even further. When Dr. Azari flew to San Diego to recover the donor limb, he and members of his team brought with them a prosthetic arm matched to the color of the donor's own skin to attach in the event the donor's family wanted an open-casket funeral. "That," Stinbring says, "was huge."

That a donor was found so quickly is all the more remarkable because UCLA and Lifesharing had entered into an agreement only a few days earlier after a team from UCLA went to San Diego to explain the program.

"It was such a learning opportunity, and just a great opportunity to participate in something so unique," Stinbring says.

In the rehab center at UCLA, Emily imagines her future with two hands. She is scheduled to remain at UCLA until June, living at UCLA Health System's hotel, Tiverton House. After returning home, she will continue hand therapy but will come back to UCLA monthly over the next year for follow-up evaluation and to monitor her immunosuppressive medications.

She is looking forward to going home and moving ahead with her life. "I want to see my daughter every day and sleep in my own bed with my own pillows," she says. She is anticipating the day when she can play catch in the yard, pull her hair into a pony tail, cut up a steak, improve her typing skills enough to advance to the next level in her job and teach her daughter to tie her shoes.

In the weeks since her surgery, her daughter has come to visit several times. The child seems unfazed by her mother's transformation.

"She really doesn't make any fuss about it," Emily says. "She thinks Mommy's new hand is cool."

 

Criteria for Transplantation
To be considered as a candidate for the UCLA Hand Transplant Program:
  • The patient must be between 18 and 60 years of age.
  • The amputation must have been at the wrist or at the forearm level.
  • The patient must have no serious infections, including hepatitis B or C, or HIV.
  • The amputation was not due to a birth defect or cancer.
  • The patient is otherwise in good general health.
  • The patient will commit to extensive rehabilitation, will adhere to an immunosuppressant medication regimen, and will participate in follow-ups with the transplant center.
 





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