In 2013, in his grandfather’s workshop in Annapolis, Andrew Guthrie, now 24, was about to push a wooden board across a planer, a machine with two exposed blades on top that flattens the wood’s surface. The board would become part of a desk that he was building, his third woodworking project. But when Guthrie began to guide the board through the machine, he says, “my hand was too close to the blade.” It shaved off his middle finger, ring finger and pinkie finger on his right hand, the hand he writes with. In pictures, it looks like an ice cream scoop was dragged along the length of his fingers, digging up arteries, veins, bone, tendons and skin on the palm side but leaving the skin on the back of his hand somewhat intact. Despite the horrific nature of his injury, Guthrie says in the instant that it happened, he felt “absolutely no pain.”
By the time he was in the ambulance, however, the pain was so strong that even painkillers weren’t much help. When he arrived at Union Memorial Hospital’s Curtis National Hand Center (CNHC), a medical fellow looked at his hand and said he was likely to have his three fingers amputated. “I was prepared to accept this,” Guthrie says. Because of the capabilities of modern medicine, though, Guthrie has 10 fingers today, and miracles like these are happening at hospitals across the Baltimore region.
In Guthrie’s case, he made an extraordinary recovery, but the type of procedure he had done—known as a toe-to-finger or toe-to-thumb transfer—is not new. It’s a treatment that is often available at specialty centers like CNHC, and is most commonly an option for patients who have amputated thumbs. For Guthrie, Dr. Ryan Katz, along with Dr. James Higgins, chief of CNHC, took tissues from two toes to reconstruct his middle and small fingers. (They covered his ring finger with a skin graft-type product.) “The toes have everything that the fingers have,” Katz says. “We [could] basically provide all the tissues that [Guthrie] lost by going to his feet.” Known as a “flap,” this procedure involves transferring tissues that come with their own blood supply from one site to another. (This is different from a graft, such as the bone graft that was done on Guthrie’s ring finger, which does not come with a blood supply.) During surgery, Katz and Higgins detached Guthrie’s second toe from each foot, leaving at least one artery and one vein protruding from each toe. Using a microscope, micro-instruments with fine tips and sutures that are “thinner than a human hair,” Katz says, they sewed the artery from the toe onto an artery from the hand, and a vein from the toe onto a vein from the hand. When the surgeons released the clamps that held everything together, the new fingers “turned pink immediately, and [they were] alive from that point on,” Katz says. Compared to a graft, “the bone will heal faster; the nerves will start feeling.”
Today, Guthrie, a Ph.D. student in computer science at Stony Brook University in New York, has even regained some range of motion in his two fingers: The middle finger can bend 90 degrees and the smaller finger can bend 10 to 15 degrees, both at the first joint. (His compromised toes, of course, will never function the same.)
Having resumed woodworking just four months after his surgery, Guthrie also finished his desk. It’s a beautiful, gleaming structure with a flattened hexagon top, and a base comprised of five panels with walnut trim, arches of cherry wood and molding everywhere, “even on the edges of the shelves,” Guthrie says with obvious pride.
Like Guthrie’s love for woodworking, Mekhi Ferguson, 13, has a passion, too: “I love airplanes so much,” he says of the interest born from the yearly trips he takes to Chicago to visit family with his great-aunt Priscilla Giles, his caregiver here in Baltimore. (Mekhi’s mother died when he was 6.) He wants to own a large airport someday.
It’s a big dream, especially for a kid who has faced many medical challenges throughout this life. Part of the 0.5 percent of children in the U.S. who are considered “medically complex,” according to the Children’s Hospital Association, Mekhi was diagnosed with diabetic embryopathy at birth. This condition affects babies whose mothers have severe diabetes, as his did. He had a cleft palate and a skull that fused too early, and he still has arthrogryposis, or frozen joints, meaning that he cannot bend his left knee.
Providers have opened up his skull so his brain could grow and performed around 20 surgeries, four of which required year-long inpatient rehabilitation stints at Mt. Washington Pediatric Hospital (MWPH). Today, Mekhi, who has written a book about his experiences at MWPH that he hopes to self-publish, still walks with two Lofstrand crutches and has to sit on the edge of chairs because he is not able to keep his balance when bending his hips.
Children like Mekhi can face longer hospital stays and an increased risk of medical errors because so many specialists are involved in their care. But Mekhi’s providers have always worked together to coordinate his treatment plan. He goes to MWPH on Fridays, for example, for physical and psychological therapy. His two providers, Sonya Johnson-Branch, physical therapist, and Dr. Bradley Schwimmer, pediatric psychologist, coordinate their schedules so they can see Mekhi back-to-back and “make things easier on the family,” Johnson-Branch says. “If he has a bad therapy session, we can [also] meet and talk about how to get over a barrier he is facing.”
More recently, Mekhi has mainly needed orthopedic surgery, so his orthopedic doctors, physical therapists and teachers from his public school have worked together to make sure he has appropriate therapy afterward. “I’ll call his gym teacher, and we’ll talk a lot about the equipment he uses,” Johnson-Branch says. Then “we all meet Mekhi’s needs.”
Mekhi loves school, where he is the “fun guy,” says Dr. Virginia Keane, his pediatrician since birth. “When you see him, [he looks] like this little old man. He walks with a cane; he’s bent at the hips. [But] he’s got this incredibly
wonderful spirit, this can-do attitude. He wants to be the best he can be.”
Providers say the same thing about Jimmy Poleto, now 30, who was hit by a drunken driver in an SUV while riding his motorcycle on Harford Road around 1:45 a.m. in the summer of 2012. “He always had a lively spirit, even through his recovery,” says Alexis Lucas, a certified brain injury specialist and his occupational therapist at Levindale Hebrew Geriatric Center and Hospital, one of the LifeBridge Health Centers. “He was a go-getter before the accident, and he never lost that.”
Diagnosed with a slew of injuries—traumatic brain injury, an open book pelvis break, a shattered femur and kneecap, a broken tibia, a lacerated liver, broken fingers and more—Poleto was given a 3 percent chance of survival. He was in a coma for 96 days. Then, one Tuesday, his wife Kathryn noticed that he was nodding as she talked. He couldn’t speak, but “I knew he was awake,” she says.
Poleto stayed in the hospital for the next few months. “He was basically starting over,” Kathryn says. “He had to learn to feed himself; he had to learn to dress himself; he had to learn to go to the bathroom.” Poleto credits Lucas, his therapist,
for getting him to where he is today. Through daily, intense therapy sessions, the two developed a lighthearted, almost comedic, rapport. When Poleto started using a computer to type, for example, Lucas asked him what he thought of her and the other therapists. “He definitely typed a bad word,” she says, laughing. When he had to do range of motion stretching for his tight muscles—“which he couldn’t stand,” Lucas says—she made deals with him, such as offering to let him hit her after the stretching.
“He was like, ‘Deal. Let’s do it,’” Lucas says. At the time, “I’m more dying of laughter than anything else. He was trying to hit with such force, but it felt like when kids hit you: It doesn’t hurt at all.”
Poleto left Levindale in December of 2012 to go home. Then, in November of 2014, he moved into a VA hospital in Richmond, Va., where he is learning to be completely independent. As of February, he was still working on his speech—“Sometimes his mouth can’t coordinate fast enough to how his brain is working,” Lucas says—but his sister had raised more than $12,000 on GoFundMe, a crowdfunding website, for him to enroll in intensive speech and occupational therapy programs.
On the phone from the hospital, Poleto, who speaks slowly and carefully, says that Lucas is a “very caring person.” Later, he sends a text: “Alexis was more than good,” he writes. “She’s like a sister.”
As lead singer of the ’90s tribute band Rollerblades, Jim Dickinson, 35, has made a less dramatic but still significant recovery. Last spring, after a busy week, “I was losing the falsetto in my voice,” says Dickinson, who at the time played 35 to 40 shows a year on weekends and led leadership trainings during the week. “It was feeling like it was cracking, feeling fatigued. By the end of the second gig, I was really having a lot of trouble hitting the high notes.”
About 30 percent of people will suffer from a voice disorder at some point in their lives; for people like Dickinson—singers, trainers, teachers—that number leaps to 60 percent. A voice disorder or dysphonia could be characterized by roughness or changes in pitch; it could also mean a person is working harder to use their voice, says Dr. Lee Akst, director of the Johns Hopkins Voice Center, which has four locations.
Last year, the Hopkins Voice Center at Greater Baltimore Medical Center unveiled a new treatment space for people with voice disorders: The Fender Music & Voice Studio, the only space of its kind in any of the Johns Hopkins Voice Centers. The studio is stocked with guitars, a piano and other instruments, making it “great for musicians with performing voice complaints because we can allow them to perform as part of their therapy session,” Akst says. “It feels like a little bit of a rehearsal studio or a music room they may have in their own house.”
After Dickinson was diagnosed with a hemorrhage, or ruptured blood vessel, on his vocal fold and a polyp, or bump, on his vocal cord, he had about six voice therapy sessions in the new studio space. Dickinson sang while his voice therapist played scales on the piano, and she gave him tips about how to improve his posture and relax his muscles so he could decrease the wear and tear on his voice. “I would also pick up a guitar and run through some songs because it’s a really different experience to sing properly while you’re also playing an instrument,” he says.
Through the sessions, Dickinson’s voice healed. Though he did lose his voice again last fall after playing an extra long gig, “I kept from doing any real damage, probably because of the techniques I learned [at the center]. I took it easy for a couple of days and was able to sing again the next weekend.”
Adolf Levi, 83, of New York City. Diagnosed with Usher syndrome, an inherited condition characterized by deafness and blindness, Levi has been deaf since he was a young boy; later in life, his vision began fading as well. Known as retinitis pigmentosa, this visual defect causes the eyes’ photoreceptors or cells to gradually lose the ability to detect light. “There’s a tunnel vision effect,” says Dr. James Handa, the Robert Bond Welch Professor of Opthalmology at Johns Hopkins Hospital. “There’s first loss of peripheral vision and then it closes down on the central vision.”
When Levi lost his vision completely, “he felt like his life was being taken away from him,” says his daughter Judy Mazon. He couldn’t drive anymore or go outside alone. He couldn’t use sign language on his own; instead, his family had to bend his fingers into the signs they wanted to communicate to him. “He was very depressed and all he wanted was to see again.”
In the last couple of decades, a new treatment option has emerged, for retinitis pigmentosa: the Argus II Retinal Prosthesis Device, or the bionic eye, an implant that allows patients to see moving shadows and spots of light by electronically stimulating the secondary cells that still remain in the eye after the photoreceptor cells have degenerated. In December of 2014, Levi became the first patient at Hopkins to receive the bionic eye following the FDA’s approval of the device in 2013.
The actual device isn’t really an eye at all, but a chip that is surgically implanted into the eye. To do this, Handa makes an incision in the sclera, the white of the eye, then places the chip over the macula, “the sweet spot of the eye” in the center of the retina, and secures it with a tack. Underneath the device are 60 electrodes that touch the retina. “Those 60 electrodes make an image that the patient perceives,” he says. The device also includes a pair of glasses with a video camera, and a box or a computer—patients clip this on—that captures the images and converts them into nerve impulses that the brain and the eye can understand.
“[Patients] have to scan their head so the camera goes across the image, and then they interpret what they see,” says Dr. Gislin Dagnelie, associate director of the Lions Vision Research and Rehabilitation Center at Hopkins. But “it takes a long time for them to learn exactly what they are looking at.”
A computer or cellphone would be comprised of around 1 million dots of light, but Levi is only able to see 60 dots in a 6-by-10 rectangle, about the size of a small letter. “It’s like learning to see all over again with a very limited amount of vision,” Dagnelie adds.
Three months after his surgery, this has been Levi’s experience. “He’s not sure what he’s looking at, so he’s upset about that,” Mazon says, adding that Levi practices getting used to his new vision by studying white shapes on a black magnetic board he got from Hopkins. Soon, the hospital also will set him up with a vision rehabilitation therapist. Still, “he expected to see more and understand more,” Mazon adds. “But he’s trying so hard. It’s a learning process.”
But once patients have adjusted to the eye, which can take three to six months, it can have a profound impact on a patient’s quality of life. Handa tells stories of a man who was able to see Christmas lights for the first time in more than 25 years and a woman who could finally marvel at the moonlight bouncing off waves.
Levi had his own profound reaction about two weeks after his surgery, when he went back to Hopkins for a follow- up. The team tested the 60 electrodes in his implant, programmed his computer with the correct currents for each electrode and turned on the camera for the first time.
“As they were flashing lights, he could see those lights,” Mazon says. “It was amazing. He was tapping my hand [as if to say], ‘Yeah, I can see.’”