Terri Schiavo Life & Hope Network: Advocates for Patients with Cognitive Disabilties

The following article was written by Tara Behan and published on July 14, 2013 by Main Line Today under the title: Terri Schiavo Life & Hope Network: Bobby Schindler's Organizations Advocates for Patients with Cognitive Disabilities.

After the medical and legal battles surrounding the Terri Schaivo case, her family has taken their Narberth-based organization to the national level.

By Tara Behan, Main Line Today - July 14, 2013

Bobby Schindler on front of portrait of Terri Schiavo

Twenty-three years have passed, but the memories are still vivid. Bobby Schindler’s father called just after 5:30 a.m., and he rushed to his sister’s apartment, where he found her unconscious on the floor. He’d just seen her a few hours ago at his own apartment in the same Florida complex. She’d been fine then. She just had to be fine now.

Paramedics worked on Terri Schiavo for 30 minutes before she was stable enough to be transported. “If she makes it to the hospital alive, it’ll be a miracle,” someone told Schindler as they wheeled her into the ambulance.

His 26-year-old sister did make it to the hospital alive that February morning in 1990. But it was only the beginning.

It’s now June 2013, and Schindler lives in Narberth, his two-bedroom apartment within walking distance of the Terri Schiavo Life & Hope Network. The converted Victorian home is a modest but comfortable headquarters for the nonprofit organization, with just enough space for Schindler and his mother, Mary, who often visits from Florida. His father passed away in 2009. Additional storage space downstairs houses the countless documents and court records that chronicle and dissect what happened to his sister, right up to her controversial death in 2005.

The family originally established the Terri Schindler Schiavo Foundation soon after her death, running it in St. Petersburg, Fla., until 2011. But Schindler—who grew up with his sister and their family in Huntingdon Valley—relocated to the Main Line to be closer to New York and Washington, D.C. With the move came a change in name, but not the overall mission, which is “to protect the rights of people with cognitive disabilities and the medically vulnerable who are facing life-threatening situations.”

“I missed the Philadelphia area a lot,” says Schindler. “I can’t tell you how much support we’ve received in just the past year. It’s a much better situation here for our cause.”

The difference in last names prevents strangers from making any initial connection between Schindler and his sister. But once they find out, he’s accustomed to correcting the misconceptions they have about Terri’s death. “People’s understanding of her condition is completely inaccurate,” he says. “People have said to me that they thought she was brain dead, that she was in a coma, that she was hooked up to machines, or that she was dying. None of that is true.”

Schindler blames most of it on how the media reported the story, which enthralled the masses for more than four years. Schindler and his younger sister, Suzanne, have traveled the world to make sure the truth is out there. And, in 2006, the family wrote the book, A Life That Matters: The Legacy of Terri Schiavo—A Lesson for Us All.

It’s certainly not the lifestyle the former Catholic high school teacher had envisioned for himself. “My friends still can’t believe I do public speaking,” says the soft-spoken Schindler. “They still make fun of me for it.”

But while Schindler never sought out the recognition, he really had no choice.

Terri Schiavo

Credit conservative radio host Glenn Beck for first shining a national spotlight on the Terri Schiavo case in 2000. At the time, he had a radio show in the Tampa area, and he began covering the Schindler family’s seven-year battle with Michael Schiavo. At stake: their daughter’s life.

To this day, there’s no conclusive indication of what caused Terri’s collapse—though drug use and heart attack have been ruled out. What is known is that Terri suffered hypoxic encephalopathy, a brain injury caused by oxygenation starvation to the brain. Soon after her collapse, she fell into a persistent vegetative state. Mechanical life support wasn’t necessary, but she had to be fed through a tube. Initially, Michael and the Schindlers were on the same page: His wife would continue to receive rehabilitation and therapy in hopes that she’d show gradual improvement and eventually could be cared for at home.

In 1992, a $1.5 million medical malpractice lawsuit was awarded to Michael, who couldn’t be reached for comment for this story. As Terri’s legal guardian, he’d promised to use part of the settlement for his wife’s rehabilitation, and the rest would be placed in a trust for her future care. If Terri died, he would inherit the money. By 1993, Michael and the Schindlers were adversaries. “Michael had a complete change of heart from that point on,” says Schindler. “He stopped rehabilitation therapy; he basically abandoned her and confined her to a bed.”

The Schindlers were allowed only visitation rights. They offered to take over care of Terri and release Michael from all responsibility. Beck brought their story to a national audience once his show was syndicated, and even Florida Gov. Jeb Bush tried to intervene.

But the state had enacted a law declaring feeding tubes as artificial life support, and Michael convinced the courts that Terri wouldn’t want to be kept alive by artificial means. On March 18, 2005, her tube was removed. She survived almost 14 days without food or water, finally succumbing to severe dehydration.

The Schindlers may have lost the fight to keep Terri alive, but they haven’t lost their resolve. “We’re not talking about authentic end-of-life situations; we’re talking about people who aren’t dying,” says Schindler. “Just because a person has a profound brain injury, they’re no less valuable as a person.” 

The family has a goal of one day opening the first Terri Schiavo Life & Hope Network Rehabilitation Center, a state-of-the art facility for those with cognitive disabilities. Schindler is currently in talks with a prominent area hospital about a partnership, and Dr. Richard Bonfiglio, former medical director of Bryn Mawr Rehab Hospital, is working with Schindler on the logistics. One goal is to provide evaluations of individuals deemed to be in persistent vegetative and minimally conscious states to determine if their conditions can improve. “We’re hoping that a combination of medicines and therapies will actually help these individuals function at a higher level,” says Bonfiglio. “Another goal is to teach the caregivers how to care for the individuals in a home setting.”

Money for the project would come from private donations, which Schindler is working to secure. Such utter devotion to the cause has kept him and the rest of the family focused in the years since Terri’s death. No amount of time, however, will erase the what-ifs. “Our only intention was to bring Terri home and love her unconditionally the way she was,” says Schindler. “We were unable to do that for her, but we want to help make sure others have that opportunity.”

Visit lifeandhope.com.