Katy Hayes, the Texas mom who lost all four limbs to an infection soon after she had her third child, has been okayed for a double arm transplant by doctors at Brigham and Women’s Hospital in Boston. She’ll be the first person in the U.S. to get two full arms transplanted at once and is now at the top of the New England Organ Bank’s waiting list for them.
Hayes, who has been without arms and legs for more than two years, looks forward to a time when she might be able to regain some independence.
“It’s amazing -- when you have arms and legs, you never think about what a gift they are,” Hayes said in a news conference at the hospital Wednesday. “Not having them has been scary and horrible. I can’t do anything for myself. I can’t feed myself. I have to be babysat – that’s ridiculous for a 44-year-old. I’m looking forward to having my independence back.”
Perhaps equally important to Hayes is being able to hold her husband and three children again.
“I want my life back,” she said. “I want to hug my children and hug my husband. I want to be able to brush my teeth. I want to be able to wipe my own bottom again.”
While there have been transplants of the forearms and hands, Hayes would be the first patient in the United States to receive a transplant of two arms above the elbow, her doctors said.
It’s not clear yet just how well those new arms will work since a lot of rewiring will need to occur once surgeons have attached the nerves, muscles, bones, and tendons from Hayes’s stumps to those of the donor arms.
“We hope that over time she will get flexion and extension of the elbows,” said Dr. Bohdan Pomahac, director of plastic surgery transplantation at the Brigham. “Certainly that would be a huge improvement, allowing her to get to and from her wheelchair. How much more function she’ll get is not well known. It depends on a lot of factors. We hope she will regain sensation in most of her arms and hands as well.”
The main issue will be in the nerve connections, Pomahac said. Because Hayes lost her arms just below the shoulder, the nerves will need to grow a very long distance if her new hands and fingers are to work.
“The length is the primary concern,” Pomahac said. “As you go higher up on the arm, you’re not sure how to get them to reach perfectly. It’s like trying to rewire a fiber optic cable that’s been cut. It’s difficult to put it back together perfectly.”
Based on the experience with other transplants, doctors know that the rewiring can take a long time. Hayes said she’s been told that the nerves grow at about a 1 mm per day.
Hayes had been living a normal life in Kingwood, Texas, up until a few days after her third child was born in 2010. She developed severe abdominal pain and headed for the emergency room. It turns out that she was suffering from an infection with group A streptococcus – the same germ that causes strep throat and a range of other infections, including necrotizing fasciitis, often called "flesh-eating" disease.
“Two and a half years ago I walked into the emergency room on my own two feet,” Hayes remembered. “Most of the doctors said I was going to die and that I should prepare my family for my demise. My hands and feet were purple and black. There was no hope for them.”
After Hayes fell into a coma, doctors told her husband, Al, that the only hope was to remove all four limbs. Fortunately for Hayes, one surgeon had the foresight to preserve significant tissue below her shoulders. He hoped that one day, if surgeons found a way to transplant arms, there would be enough tissue to attach them to.
It seemed like science fiction at the time, Hayes said. “But he left the legacy of my being able to get arm transplants.”
Hayes and her family are currently living in Boston, waiting for the day that donor arms become available. Her husband has quit his job to care for her and their two younger children, Jake, 8 and Arielle, 2. Their eldest, Amber, is 18.
All of that is very expensive Hayes said. What has kept the family afloat financially has been donations to the Katy Hayes Fund.
Hayes hopes that she can serve as a beacon of hope for other amputees, especially those coming back from war with missing limbs.
“When I get these transplants, if they’re as successful as I want them to be, I want to be able to encourage and work with others,” she said. “I understand what it’s like to be in this situation, the motivation needed to keep going. I’ve heard sad stories of quad amputees from Iraq who don’t even want to leave the hospital. I want to be an inspiration to them.”
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