Coming Out of the Shadows
Abby Mauwong’s faith helped her survive a terrifying illness
Shortly after a seven-hour surgery, 38-year-old Abby Mauwong awoke slowly to the cries of a patient down the hall. Though dazed, she realized the man was in terrible distress. The young mother was recovering in the critical care unit at St. Edward Mercy Medical Center, where many patients aren’t expected to live. Abby wasn’t in top form herself, yet she sat straight up and did what she loves best, encouraging others through scripture. Abby raised both hands, pulling slender IV tubes along with her, and quoted from the book of John.
Her husband, Salefu, turned to Abby’s mother, and said joyfully, “She’s back!”
Abby’s surgery took place the day after Mother’s Day, 2011. She had been so ill before the holiday that she lay in bed, barely able to tolerate the pressure that made her feel as if her head would explode. She hardly spoke and couldn’t even cry out. Any movement would bring throbbing pain.
But following her surgery, Abby has been on her way back to health. Since her medical miracle, she has savored every moment spent with family. “Each day is a present to open. I don’t want to miss anything.”
Periods of Darkness
For some, a serious illness might serve as a first awakening. But Abby has always lived with conviction and purpose. A strong Christian, she made her first mission trips to England and South Africa at age 13. As a young woman, she learned to speak six languages, excelled academically at Louisiana Tech, and pursued a career as a missionary. Yet a shadow would periodically fall across her path, diminishing her ability to fully live.
“My medical story would make a great Hallmark special,” says the Bartlett mother of three. “But a television movie wraps up in an hour.” Abby’s struggle to learn what caused her periods of darkness lasted much longer — 20 years, in fact.
She had always been a healthy child, but during her teen years, there was a shift. She loved to cheer for her school team, but had to fight bouts of dizziness and lethargy. Sometimes she had fainting spells. Other times, she would feel so weak she couldn’t lift her hand. Abby’s symptoms eventually led her to a number of doctors; a neurologist who misdiagnosed her condition as epilepsy, a physician who told her she was merely seeking attention. She even met with mental health counselors. “Everyone thought I was crazy,” says Abby, who began to wonder herself.
Still, her life was shaping up to be one she had dreamed of. She met her husband, Salefu, a Samoan from New Zealand, at the 1996 Olympics in Atlanta. Both volunteered to work security during the games, along with 2,000 other missionaries. They followed the rules while on the clock, but once their shifts ended, they shared the Gospel with the crowd.
The couple later started a family that grew to include Ruth (now 13), Kabod (10), and Anna (8). During her years as a newlywed and young mother, her symptoms came and went. But because her body was so unpredictable, she found herself being a “hypervigilant” mother, one who often tried to control everything.
Then in February 2011, the shadow grew darker.
“I started having stutters in my brain when I couldn’t recall the day or where I was going. How could I feel drunk as a sailor when I drank only iced tea?” she wondered.
The intermittent episodes could last 10 minutes or several hours. Her body’s inconsistency was maddening. Friends started driving her children to school, and her sister helped care for her family. Her husband, clinically depressed for 10 years, had weaned from his medication “and was climbing up the hill himself.”
Despite numerous MRIs, doctors still had no answers. Wondering if she might have vertigo, Abby scheduled a work-up with Dr. Glen Blake Williams, an ear, nose, and throat doctor in March. One symptom caught his attention. When Abby took a deep breath, she felt a sharp pain in her head and blacked out. Thoroughly studying her records, Williams made a startling discovery. “I know what this is,” he told her confidently. “What?” replied Abby, “You must tell me now.” Williams looked at her steadily before announcing, “I think your brain is falling out of your head.”
Calling on Faith
Stunned, Abby started to pray. “I talked to God pretty candidly and asked, ‘What’s the skinny?’ I heard in my heart, ‘Come on, honey, let’s take the adventure that comes to us.’ I didn’t know if that meant that I was going to live or die, but I knew I wasn’t alone on the journey.”
Abby’s diagnosis was chiari malformation Type I, a condition in which the skull presses on the brain causing brain tissue to protrude into the spinal canal and block the flow of spinal fluid. In layman’s terms, “I had a size 7 head with a size 8 brain,” she says. With the gradual loss of spinal fluid, patients experience muscle weakness, headaches, and visual problems.
For the next month, she saw 10 to 12 doctors a week, searching for someone with experience treating chiari. After exhausting local sources, she contacted doctors in Nashville and New Orleans. She even got on a wait list to see the world-renowned chiari surgeon, Dr. Anthony Capocelli in Arkansas. Meanwhile, her health continued to decline.
With every sneeze or laugh, her brain tissue expanded, forcing pressure on her spinal cord and making her eyes bounce uncontrollably. As spring blossomed, paralysis set in, forcing her to a cane, then a wheelchair; eventually she was unable to speak. Day by day, Abby was dying.
Yet life continued to swirl around her. “You can’t sort out end-of-life care and in the next moment, get excited about your child’s art project. All the beautiful, yummy stuff gets triaged,” she says. “You know you’re missing it.”
A God thing
Abby calls what happened next “a God thing.” A childhood friend in Louisiana ran into someone she thought was from their old social circle. Although they didn’t know one another, she casually mentioned Abby’s condition. “Well,” says Abby, “this guy didn’t know me, but he knew about chiari.” As it turned out, Dr. Capocelli, who practiced at River Valley Musculoskeletal Center in Ft. Smith, had treated the man’s nephew for the congenital defect.
The stranger, a surgical sales rep, said Capocelli’s office owed him a favor. He called it in for Abby. The clinic opened Good Friday to run tests on her. The results were frightening. Abby’s spinal fluid was dangerously low; she had maybe two to three weeks left to live. Only surgery would save her life. The family decided to return to Bartlett to make arrangements for her hospital stay.
When Abby was ready to return to Arkansas for surgery in May, flooding along the Mississippi River shut down I-40. Through Pilots for Patients, a pilot heard of her plight and volunteered to fly her in his non-pressurized plane to St. Edward Mercy Medical Center in Ft. Smith.
Her head still throbbing, she managed to pose for a picture to reassure her children that she was okay. But the shadow persisted. “When they rolled me into surgery, they thought I would never walk or talk again.” The decompression of her brain and the reconstructive surgery lasted seven long hours. Doctors discovered too, that spinal fluid at the back of her brain had been gone for awhile.
“Lots of things about my case were extreme, even for chairi,” she says. “My brain was tangled like a vine through C1 vertebrae.” Capocelli had never seen that before. “After untangling my brain tissue from the spinal cord, they cauterized the tissue with a heat probe.” Then, something unexpected happened; her doctor calls it a miracle. Instead of her brain sealing together or narrowing, it slid back into her skull. After surgery, Abby learned the incredible news.
The shadow was gone. “I am healed!” she says.
After a steady, two-year recovery, Abby is back to her active life. “I’ve been given a second chance to live. Eventually, I might have the ability to fly and have X-ray vision because I already feel so good!” Capocelli will monitor her for the next several years but he doesn’t expect any setbacks. “Abby’s faith and drive have helped her through the stages of her life,” says the neurosurgeon.
Abby’s bucket list includes creating a world-class missionary training center and running a half-marathon. She’s also penning a book with Dr. Capocelli and in her chapters, she’ll reflect on faith, coincidence, and guardian angels.
“Dr. Capocelli told me, ‘I don’t know how you stayed alive with zero spinal fluid, how you had three children. It’s as if someone put his hand inside your head and held it together.” Abby simply smiles and says, “I know that guy.”