Henry Barnaby III’s Mission: Help Upper-limb Amputees
July 2019 Issue
On a Monday evening in July 2016, Henry Barnaby III, suffering from flulike symptoms, went to bed early. The next morning, he developed a high fever and purpura, so he went to the emergency room in Columbus, Ohio. The ER physician took one look at him and said, "He's septic."
Barnaby, who was 55 at the time, was put in a coma and given massive amounts of antibiotics. Two days later he was transferred to The Ohio State University Wexner Medical Center in Columbus, which was better equipped to treat him.
With his wife's consent, surgeons performed bilateral transradial amputations along with targeted muscle reinnervation (TMR) in September 2016 while Barnaby was in the coma due to sepsis. He woke up in November and had lost nearly 70 pounds, and his toes looked like "burnt French fries," he says. During those months, physicians told Barnaby's wife, Karen, that his sepsis was likely caused by aspergillosis, a lung infection, and they didn't expect him to live.
In December 2016, all his toes were amputated except for the middle toe on his left foot. When he asked the physicians why they left only that toe, they told him it still had viable tissue. (Surgeons removed it when Barnaby had another surgery in April 2017.)
He was transferred from the hospital to a long-term care facility before ending up in a nursing home. There Barnaby met his first prosthetist in February 2017, who fitted him with his first set of prostheses.
Karen says she and her husband were less than pleased with the prosthetist and the devices. "We did not have a good experience the first time around," she says. "In the beginning we didn't realize we had a choice. Some prosthetists are good with legs, some are good with arms and hands. But our first prosthetist was not well versed with upper limbs."
Henry says his initial experience left him discouraged and frustrated and with a "lack of faith in his prosthetist." But what he learned in the process he would use later to help others in similar situations. "When you wake up from a coma and get thrown into a game and you don't know the rules, it's hard," he says. "People need to do their homework, and I want to help."
His wife agrees. "He doesn't want others to have to go through what he went through."
A Prosthetist in Cincinnati
When he first contacted Ryan Spill, CP/L, with R. J. Rosenberg Orthopedic Lab, Cincinnati, Barnaby was attempting to build a clinical team for his care that was experienced in fitting and rehabilitation.
Barnaby was already using a bilateral transradial body-powered system when he met Spill in June 2017. The wrists were Hosmer quick disconnect locking wrists, which must be forced proximally into the wrist to lock the rotation, Spill says. Sierra Flexion units were also added between the quick disconnect wrists and the terminal devices to allow the terminal devices to be moved and locked into a flexed position, Spill says. "For a bilateral upper-limb prosthesis user it is challenging to press these small buttons, so Henry had adopted the habit of pressing them with the side of his carbon fiber prostheses, and they eventually weakened and failed in these areas," Spill says.
For about the last two years, Barnaby has been using bilateral body-powered prostheses with two sets of wrists. He uses Texas Assistive Devices' 5 Function Wrists, which allow him to use his harness to pronate and supinate the wrists, Spill says, and bilateral myoelectric prostheses with electric wrist rotators and electric hooks (Motion Control ETDs and Ottobock Greifers). Barnaby says he alternates between both sets, depending on the activity, and uses his body-powered prostheses when he drives.
Barnaby and Spill agree that a good practitioner/patient relationship is paramount. "It's essential for the patient/user to be involved directly in the decision-making process in their care because these are the individuals using the devices for activities of daily living," Spill says. "It's vital for clinicians to be open to this process, as each user has individual and unique goals that they must realize in order to live, work, and play independently."
Other than his wife, perhaps no one knows better about Barnaby's passion to be a volunteer and peer mentor to help others adjust and learn to live with an upper-limb amputation than Teresa DiMeo, a certified nurse practitioner at The Ohio State University's (OSU's) Hand and Upper Extremity Center, where she has worked for the last decade. DiMeo became involved in the Amps4Ohio support group as a volunteer and met Barnaby at the first meeting she attended in December 2017. "We immediately connected from our first interaction," she says. "I took an interest in Henry because of his bilateral upper-extremity amputations."
In March 2018, DiMeo told Barnaby about OSU's volunteer office. As a way of giving back, he immediately started to volunteer two days a week at the Hand and Upper Extremity Center, where he has been able to interact with and educate patients about upper-limb amputations.
"Henry went through one of the most difficult illnesses to survive. He is unaware of some of the early events, but he is fully aware of his recovery," DiMeo says. "He is appreciative he received the care he did, and he wants to share this with other patients and their families."
Barnaby, who also became a certified peer visitor with the Amputee Coalition in October 2017, and DiMeo continue to work together and he has since expanded his role as a volunteer at all the clinics at OSU's Hand and Upper Extremity Center, DiMeo says. "If Henry could volunteer here every day of the week, he would," she says. "He's inspirational, not only to the patients, but to the entire staff. He's a kind soul and has a true passion for helping others."
Spill says what makes Barnaby a good advocate for people with upper-limb loss is his empathy for others in similar situations whether in the rudimentary stages of their care, or someone already in the care process.
Karen says her husband wants to be a peer mentor and a volunteer because of his initial experience after his amputations. "No one trains you for something like this," she says. "It wasn't something we were prepared for and in the beginning, we had no idea what we were in for or what type of questions to ask."
Spill says, "Henry's experiences began with what he describes as not having much input in the design of his first prostheses. He also learned early the importance of working with an experienced upper-limb clinical team. Going from those initial experiences to now having appropriate components for bilateral prostheses use, he wants to share his experiences with others to ensure that they are set up to succeed earlier in their rehabilitation."
Everything Is a Process
Barnaby has adapted well to his prostheses. "Sometimes I forget he doesn't have hands," Karen says.
He has regained some of the weight he lost and has spent time on public speaking. Barnaby, who says he's never experienced phantom pain, hopes to get others to the place of acceptance and skill he has reached.
One of the first things he tells someone with a new upper-limb amputation is everything is a process. He encourages patients to ask many questions when searching for that initial practitioner. "It's going to be like adopting a family," he says. "They're going to become a big part of your life."
And consider something once as simple for Barnaby as fishing change out of his pocket. "It's absolutely overwhelming to lose your sense of touch," he says. "Once I could just reach in and feel for a nickel, dime, or a quarter. Something that was once so intuitive has now become a three- and four-step process."
Betta Ferrendelli can be contacted at firstname.lastname@example.org.