Coming Out of the Shadows

Abby Mauwong’s faith helped her survive a terrifying illness



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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.”

 

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