Atlanta, GA,
11
April
2014
|
03:00 PM
America/New_York

Mother with a Brain Injury Writes Book with Her Young Sons to Help Them Cope

Yvette Pegues recalls her rehabilitation and return to home and family life.

After his mother underwent brain surgery and her condition unexpectedly worsened, 5-year-old Isaiah Pegues asked his schoolteacher if his mother was going to die.

Now, nearly three years later, Isaiah’s mom, Yvette Pegues, of Canton, Ga., is not only alive after completing rehabilitation at Shepherd Center, but she and her children (Isaiah, now 8, and Elijah, 6) have also collaborated with her on a children’s book called “My Mommy Had Brain Surgery and I’m Okay!”

Yvette sustained a brain injury in 2011 related to a rare congenital defect known as Arnold Chiari malformation. She was diagnosed after experiencing chronic headaches and numbness on the right side of her body.

She had hoped surgery would correct the problem and she would be on her feet in a few weeks. Instead, she got worse. Yvette continued to lose mobility and became more dependent on a wheelchair.

Violent tremors caused so much tension in her body that she was unable to straighten her arms and legs. Medication and physical therapy did little to ease her pain or distress. “The neurosurgeon was surprised,” she says. “He didn’t expect me to respond the way I did.”

Rhonda Taubin, M.D., a physician at Shepherd Center who treated Yvette following her surgery, explains that a Chiari malformation is a congenital defect at the lower portion of the back of the brain. Although it can go undetected for decades, eventually it squeezes the cerebellum – the part of the brain that coordinates and regulates muscular activity – and obstructs the spinal fluid that flows from the cranial cavity into the spinal canal. Symptoms include headaches, choking, tingling hands, dizziness, difficulty swallowing and balance problems, Dr. Taubin says.

“She had an unusual medical history,” says Stacy Simmons, her case manager at Shepherd Pathways, the hospital’s post-acute brain injury rehabilitation program in Decatur, Ga. “She had tremors and shook when she walked, and she couldn’t do things she wanted to do. And she was very emotional in the beginning because she was frustrated that before coming here, she felt she was not being heard.”

Yvette recalls: “The therapists had to innovate and work so hard. Sometimes, it took three or four of them to bend my legs just so I could stand up without kicking someone.” Yvette’s team of therapists at Pathways was often unable to follow a specific plan because her symptoms were so severe. Instead, the Pathways team would innovate their skills and tools to maximize her recovery.

“Those therapists gave me amazing life skills,” Yvette says. “I learned so much from them. I still cry when I go back and see them because they’re like family.”

Yvette’s husband, Tharrow, says the Pathways team saved Yvette’s life. 

She is thankful for how the clinical team used its resources to customize her treatment plan on an ongoing basis. She learned to use a rolling walker for short distances, but also wears a belt alarm and relies on a wheelchair. She exercises regularly and returns to Pathways every few months for checkups.

During her outpatient rehabilitation, friends, neighbors and fellow church members took turns driving Yvette from her home in a far north suburb of Atlanta to a halfway point where she would then catch a Pathways bus. “It took a village to get me there,” she recalls. Rehabilitation required 12 to 15 hours a day, five days a week and a cast of supporters that she continues to thank God for in her prayers.

“During group sessions, I shared my journey, commitment and motivation with other patients who were there from all over the world for treatment,” Yvette says. “Most of them missed their families. It helped to discuss our moments of helplessness, but we didn’t allow ourselves to become overwhelmed by hopelessness.”

When sharing her experiences with her children, Yvette used the storybook example of how Humpty Dumpty was put back together again.

“We truly believe that by understanding that when I hurt, my family hurts, we also heal together,” Yvette says. “So it wasn’t a surprise when Isaiah and Elijah asked to help other boys and girls heal through their natural habit of curiosity, which may get buried during a crisis.”

The result was a non-fiction, Q&A-style children's book.

“We realize, first hand, the importance that reinforcing our home environment is a necessary extension of the total care treatment plan, and that goal-setting needs to include my young family,” Yvette says.

She has been empowered by what she learned at Shepherd Center, she says. Yvette shares her story with others in her community and teaches a lesson she calls, “disability, sensitivity and discussion.” Her message is “You Are Able!” She believes her unexpected “life-degree” has prepared her to work with children and people with disabilities, whether she ever walks again or not. To read more about Yvette and the Pegues family, visit: www.YourInvisibleDisability.com.

Written by John Christensen
Photos by Gary Meek

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.