Atlanta, GA,
12
October
2015
|
09:30 AM
America/New_York

Families From Across the Nation Travel to Shepherd Center for Specialized Care

Two families explain why they journeyed to Shepherd Center to help their loved ones regain function.

Melanie Lott knew something was terribly wrong when her fiancé, Michael Schneider, never came home from work one fateful Monday night. Panic ensued, and through her quick sleuthing, Melanie finally tracked him down through the Florida Highway Patrol.

Michael was at a local trauma center about an hour south of Jupiter, Fla.,. with several critical injuries. He had been driving on the Florida Turnpike and reportedly pulled over to rescue a cat. As he was walking along the shoulder, a car swerved and hit him at nearly 60 miles an hour, catapulting his body more than 50 feet into the guardrail.

“We didn’t really know his prognosis, but he was in a coma and had major injuries to his head, right shoulder, pelvis and ankle,” Melanie explains.

Despite her fiancé’s grim prognosis at the trauma center, Melanie refused to give up. After all, Michael was only 35 years old at the time, and the two were set to marry just six months later. They soon learned about Shepherd Center and, through her research, Melanie decided it was exactly where Michael needed to be.

“Rehabilitation facilities in South Florida cater to a much older patient population, and they didn’t seem equipped to aggressively deal with his injury,” Melanie says. “I just kept thinking he has so much life ahead of him, and I knew that every decision we made in the immediacy of the injury would ultimately determine his quality of life later on.”

They met with Ginger Murphy, MSW, a Shepherd Center clinical liaison, who evaluated him at the hospital and began the process of admitting him to Shepherd Center. Once he was stable enough to make the trip, Michael was taken to Atlanta.

Of course, what someone might need in terms of rehabilitation depends on the nature and extent of their injury. Unlike single joint issues – a knee or hip replacement – spinal cord injury (SCI) and acquired brain injury (ABI) are much more complicated.

“These are complex conditions involving multiple systems so we might be dealing with someone’s bowels, bladder, skin, sexual function on top of figuring out how the person can best approach everyday life. And ambulation and mobility are also affected,” says Brock Bowman, M.D., associate medical director of Shepherd Center. “In this case, specialized rehabilitation is essential. It’s akin to someone with cancer needing a comprehensive cancer hospital.”

Of the nearly 1,200 inpatient rehabilitation programs in the country, only a handful are specialized in brain and spinal cord injuries to the extent that Shepherd Center is, says Dan Walter, an Atlanta-based healthcare consultant who has worked primarily with rehabilitation providers for 20 years.

“You need a critical mass of patients to excel in a certain area, and it’s very hard for smaller rehab programs to have enough patients with spinal cord or brain injury to be good at it or have properly trained staff and the right equipment,” he adds.

Power in Numbers

As a Center of Excellence, Shepherd Center is able to draw from a large geographic area and has a large enough patient population – nearly 1,000 cases a year on average – to support the specialized skills, equipment and programs that are needed to treat catastrophic spine and brain injury.

“We have developed a level of expertise for treating these injuries and knowing what might be possible, and patients won’t find that in a general rehabilitation program,” says Angella Clemons, RN, provider relations coordinator at Shepherd Center.

Research also consistently shows the earlier someone can start rehabilitation, the better the outcomes, including being able to do activities of daily living, maintain hobbies and even return to work or school. Because Shepherd Center is equipped to handle all levels of care – even patients who are still acutely ill – patients often start intensive rehabilitation sooner. For example, patients might still need surgery, require a ventilator or be semi-conscious, but can still benefit from some form of rehabilitation.

“At other hospitals, rehabilitation is often delayed,” Clemons says.

Patients at Shepherd Center tend to be much younger than the average patient at other rehabilitation facilities, which is what initially attracted Melanie to the program, she says.

A Healing Experience

For many families, hope and inspiration come from a shared experience with other patients and families, as well as the hospital’s focus on what matters to the person who is injured.

“These are relatively rare injuries, and it can be very isolating at first. It’s really like being alone on an island,” Dr. Bowman explains. “But once people get to Shepherd Center, there is a huge amount that’s gained through common experience, and it helps families cope.”

And patients get much more than the traditional mix of occupational, speech and physical therapy; they get an experience that brings healing and hope.

“We understand that patients are going through more than just recovery from an injury; they are learning a new way of life and establishing a new ‘normal’,” Dr. Bowman says.

As part of the rehabilitation program, patients may take advantage of a number of other integrated programs including:

  • Family and psychosocial counseling and support
  • Transitional support
  • Recreational therapy
  • Music therapy
  • Outings to places like local malls, tourist attractions and sporting events to help with reintegration into the community
  • A three-day workshop to learn outdoor skills at a lakefront camp
  • Vocational counseling to help patients return to work or school

“These services are provided seamlessly at Shepherd Center, and they don’t necessarily exist in general rehabilitation settings,” Clemons says.

Sandi Rocha of O’Fallon, Mo., whose son, Christian sustained a spinal cord injury after multiple surgeries to fix scoliosis, says she couldn’t agree more.

“When we arrived at Shepherd Center, I was completely astounded by the types of specialized therapy offered – the advanced robotics and neurostimulators. But outside of all of the modern medicine is this incredible focus on encouraging and teaching patients that your life doesn’t have to end because you had a traumatic event,” she says. “If you were a kayaker, they will get you in the pool to kayak.”

Her son, 15 years old at the time, loved to play basketball with his brothers.

“When the activities staff learned this, they put him in a modified wheelchair so he could play, and that was huge,” she says. “It gave us some hope that his future wasn’t so bleak even if he never walked again.”

This tailored approach is part of the staff’s ongoing effort to teach people how to adapt to the injury, but not let it define them.

A Sense of Relief

Because of the wealth of expertise at Shepherd Center, many families say they can finally breathe easier once their loved one is here. The staff’s confidence in handling these injuries gives them comfort and eases the stress that’s been wearing them down.

“Our first night at Shepherd was the first time I really slept in the five weeks since his accident,” Melanie explains. “We had been advocating for him around the clock at the local hospital – to make sure he was being turned and cleaned. It was the greatest sense of relief.”

The Best Place for Specialized Care

One of the biggest issues many families face when deciding on a rehabilitation program is whether to stay close to home. The thought of picking up and leaving homes, jobs and other demands can be overwhelming on top of the initial shock of the injury.

Sandi can relate. A single mom, she was 900 miles away from her three other children during Christian’s two-month stay at Shepherd Center. She also lost her job because of it.

“It was daunting, but I knew it was the place he needed to be to walk again,” she says. “You might give up a month or two or three, but you gain years of productive, happy living, and Shepherd Center became an extension of our family.”

Sandi found Shepherd Center after researching spinal cord injury online. She also found out about another family from the St. Louis area whose child was paralyzed from the neck down and was able to walk out of Shepherd Center upon leaving.

Melanie feels the same way about her husband.

“At the end of the day, nothing else mattered except getting him the intensive care he needed,” she says.

Dr. Bowman has found that patients and families often need help transitioning from the grief and shock of the initial event to recovery and rehabilitation. Getting out of that environment can sometimes help.

“These are all-consuming, big injuries,” he says. “You certainly have the familiarity and support of family and friends, but those same people typically only know the loss and what has changed. They don’t know what is possible because these injuries are so few and far between. But here, we manage these injuries all the time. Three months away often means a lifetime at home.”

Specialized centers like Shepherd Center also have a broader continuum of care to maximize outcomes and teach patients how to manage the injury once home.

“These are not one-time events,” Dr. Bowman adds. “You need a continuum of care from then on, and that’s what you get at Shepherd Center.” In fact, discharge planning begins upon admission to help ensure patients can continue to build on the gains made during their stay.

Sandi says the education and skills they attained at Shepherd Center were invaluable. “We became experts on his injury and what he needed moving forward,” she adds.

Today, Christian is back to playing basketball with his three brothers again, drives a car, and is generally leading a normal life.

“He’s 95 percent healed, and there’s not much more we could have hoped for than that,” Sandi says. “There is no question in my mind that it was the specialized care he got at Shepherd that gave him the best possible chance of recovery.”

Making a True Difference

Melanie will forever be grateful for the intense rehabilitation Michael received at Shepherd Center after he was hit alongside the highway, she says.

“I know in my heart of hearts that we would not be sitting here in a living room of a house we bought together, getting ready to have our first baby any day now if we didn’t have Shepherd Center,” she says. “Shepherd saved his life.”

(Since this writing Melanie and Mike are proud parents of a baby boy, Jackson, born on June 23, 2015).

For more information about theinpatient and outpatient programs, visit, shepherd.org/patient-programs.

 

SIDEBAR:  Better Outcomes from Specialized Rehabilitation

When considering rehabilitation, it’s a good idea to ask about outcomes. Data show more patients with brain and spinal cord injuries return home if they are in a specialized rehabilitation program. In fact, Shepherd Center’s discharge rate to the community is 21 percent higher than the national average. Functional gains for patients at Shepherd – what patients are able to do upon discharge compared to when they were first admitted – are also 12 percent higher than the national average for SCI and 20 percent higher for brain injury.

“The chance to return home is much higher, and because of the intensive education we give patients and families for how to manage these conditions, rates are lower for complications and readmission to the hospital,” Dr. Bowman says.

Many patients elect to drive three or four hours for an outpatient visit at Shepherd Center because they find everything is done so efficiently, he adds.

As changes continue in the healthcare industry, rehabilitation medicine is being affected, though healthcare consultant Dan Walter says these injuries are different.

“With the Affordable Care Act, most health systems are trying to keep patients within their network; however, a big exception to this will be specialty rehab care,” he says. “Most providers and insurers know it’s hard to be good at this unless you do a lot of it, and this expertise means better outcomes and money saved.”

Other things to consider when selected a rehabilitation facility:

  • What is the age of the average patient?
  • When does planning for the return home begin? What percentage of patients are able to go back home?
  • How will rehabilitation be structured? What are the main goals?
  • How many different care providers will be working together to help with rehabilitation?
  • In what ways are families engaged in the process?

Shepherd Center has an array of materials and online programs to help individuals and families learn about SCI and ABI and where to go for help. For more information, check out:

By Amanda Crowe, MA, MPH
 

About Shepherd Center

Shepherd Center, located in Atlanta, Georgia, is a private, not-for-profit hospital specializing in medical treatment, research and rehabilitation for people with spinal cord injury, brain injury, multiple sclerosis, spine and chronic pain, and other neuromuscular conditions. Founded in 1975, Shepherd Center is ranked by U.S. News & World Report among the top 10 rehabilitation hospitals in the nation. In its more than four decades, Shepherd Center has grown from a six-bed rehabilitation unit to a world-renowned, 152-bed hospital that treats more than 900 inpatients, 575 day program patients and more than 7,100 outpatients each year.