Will Lautzenheiser wants to hold his niece and his partner. He wants to shoot videos. He wants to cook, and he wants to put on his own leg prostheses.
The 40-year-old filmmaker and university teacher has not been able to do those things for nearly three years, after a group A streptococcal infection ravaged his body and surgeons amputated all four of his limbs to save his life.
But Lautzenheiser hopes he will be able to soon. Doctors at Brigham and Women’s Hospital announced Thursday that he has been approved for a double-arm transplant, an experimental procedure that has been performed only a few times in the United States.
Brigham doctors performed a double hand transplant in 2011 on Richard Mangino of Revere, who has slowly gained use of his new hands. Lautzenheiser’s surgery would be more complicated because his left arm is amputated above the elbow, and doctors at the hospital have never performed a transplant so high on the arm. His brain would have to make a new connection to the nerves in the donor forearm for it to function.
In arm transplants, nerves grow at a rate of about 1 millimeter per day, said Dr. Simon Talbot, a plastic surgeon who will lead the surgical team, so recovery takes longer when the nerves have longer to travel.
Doctors are confident that Lautzenheiser can eventually gain function of his right hand, but they are unsure about his left.
The goal is to give him “a tremendous amount more independence,” Talbot said. “When you don’t have very much, a little is a lot.”
Lautzenheiser nodded his head in understanding as his doctors, Talbot and Dr. Bohdan Pomahac, the hospital’s director of plastic surgery, spoke at a press conference of the procedure’s potential challenges. Lautzenheiser, who uses prosthetic arms to eat and dress himself, helped the surgeons explain the procedure by using his stumps to show where they would operate.
Taking the stage, so to speak, comes naturally for Lautzenheiser. After he lost his limbs, he became a stand-up comedian to help cope with his loss. “I keep you on your toes,” Lautzenheiser said to a club audience in a video shown at the press conference, “because I don’t have any.”
To receive approval from a hospital review board, Lautzenheiser had to go through a nearly yearlong evaluation process, which included scouring his medical history as well as a psychological and psychiatric evaluation.
“My thoughts stayed hopeful through the evaluation,” Lautzenheiser said in an interview. “The recovery is going to be the biggest challenge, so I’m going to need the support of my friends and community. I need all the help I can get.”
The surgery would take 12 to 16 hours, Talbot said, and Lautzenheiser would spend one to two weeks in the hospital. Learning to use his new arms could take years.
Lautzenheiser would also have to take immunosuppressant drugs to prevent his body from rejecting the transplanted limbs. The drugs weaken the immune system, which can lead to additional complications, such as infections the body would normally fight off.
Cost is not a concern. Lautzenheiser’s surgeons plan to donate their time, and the hospital will cover additional expenses.
Brigham has another patient, Katy Hayes, who is also awaiting a double arm transplant, both above the elbow. Hayes has been on the waiting list for nearly two years, but young, healthy, female donors are hard to find, Talbot said.
He said there are more young male donors because they more often die in accidental circumstances. The donor must have the same blood type and antibodies for the transplant to be successful, which makes finding the perfect match a sporadic process.
Mangino, 68, who also lost all four of his limbs after a massive infection, said waiting for a donor — he waited about six weeks — and enduring the recovery are the hardest parts of the procedure. Now, though, Mangino said he is “doing good.” He enjoys playing football and soccer with his grandchildren, and the independence he has gained from being able to push himself up with his arms, put on his leg prostheses, and wash himself.
More importantly, Mangino said, people no longer stare at him or clear bus seats so he can sit down.
“If somebody has a mental issue, they don’t have a sign on their head saying, ‘I have an issue,’ ” Mangino said. “You want to be like everybody else.”
Even if the surgery doesn’t go perfectly, Lautzenheiser said it is important for doctors to discover potential complications so they can help other amputees.
He pointed to the Boston Marathon bombing victims, many of whom lost limbs.
“We’ve shown we really are Boston strong, and that’s not just a catch phrase,” he said. “The support we’ve given to people who have disabilities, however they’ve been obtained, is huge.”
Lautzenheiser said he is also considering a double leg transplant, though he will wait to see how he responds to the arm transplants.
He often smiled at his partner, Angel Gonzalez, who sat in the front row as Lautzenheiser talked about a future with full arms.
“I wouldn’t be human if I didn’t have some nervousness and doubts,” Lautzenheiser said in an interview. “I’ve been going through this process as an exploration.”