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Parents refused to ‘interrupt’ Haley’s life

ANNA, Ill. (BP) — Haley Willis has exceeded expectations her whole life. Diagnosed with a neural tube defect 21 weeks before she was born, doctors told her parents, Jeff and Lynel, that Haley wouldn’t survive the pregnancy. When she was born on her due date, the Willises were told to take her home and enjoy her for as long as she survived –- two weeks, at most.

Haley will turn 10 this summer. And Jeff and Lynel Willis, who serve at Harvest Church in Anna, say their oldest daughter is a miracle with a special gift for making people smile and drawing shy kids out of their shells. And defying the odds.

The Willises, who were told it would be easier to “interrupt” or terminate their pregnancy and start over, knew from the moment of Haley’s diagnosis what their responsibility was concerning their daughter.

“I was realizing really quickly that this wasn’t about Jeff and me,” Lynel said. “This was about God showing His glory through something as little as this baby. And we were just along for the ride.”

One month before her birth, the Willises named their daughter Haley Faith. Lynel said, “We wanted faith in the name, because we were having her out of faith.”

Knit together

Jeff and Lynel met at Midwestern Baptist Theological Seminary in Kansas City, Mo., where Lynel was preparing for the international mission field and Jeff was studying to be a worship minister. He’s no stranger to defying his own odds; born without several of his fingers, Jeff plays drums, piano and guitar.

Before they got Haley’s diagnosis, their biggest concern was that she would have all her fingers and toes. But after their doctor gave them the bleak news of her condition and prognosis, the Willises started praying very specific things for her birth: to see her eyes, hear her cry and make snuggle sounds, to be able to feed her, and that Haley would grab on to Jeff’s pinkie.

“When they laid her on my chest, and at the very moment, she grabbed on to his pinkie,” Lynel said. “And the whole room just went quiet, because they all knew what we had prayed for, and it was happening right before our eyes.”

Haley’s neural tube defect caused part of her brain to separate and grow in a sack called an “encephalocele.” She was born without one-third of her brain, and what she did have was “disorganized,” Lynel said.

From the very beginning, the Willises knew it was up to them to be Haley’s advocates. She was eating and sleeping like any baby but doctors still didn’t give her hope for long-term survival. She desperately needed a shunt to relieve pressure in her brain, but the neurosurgeon they visited wouldn’t even see her at first because he considered it a waste of time.

One physician who did fight alongside the Willises for Haley’s quality of life came to be known by the family as “Uncle Freddie.” He set up hearing and seeing tests for Haley — which she passed -– and at six months, the neurosurgeon agreed to see her.

“By this time, she was smiling and looking at us, almost like a normal baby,” Lynel said. “She looked up at him, and he said, ‘This child is looking at me.’ And she smiled at him.”

Haley had her shunt surgery that day, the first in a long string of major procedures to better her life. Jeff accepted a church staff position in Tucson, Ariz., far away from the couple’s Midwestern roots. But it put them much closer to the Barrow Neurological Institute in Phoenix, where, shortly after her first birthday, Haley had a craniotomy to repair her skull.

The procedure should have taken six to eight hours, so the Willises were stunned when the surgeon walked out after an hour and a half. “He just said, ‘I can’t believe what I just saw,'” Lynel recounted. The surgeons had been able to use some of the bone in Haley’s skull to close the tennis ball-size opening. He told the Willises they had “knitted the pieces together.”

The surgeon didn’t know her parents had prayed Psalm 139 -– “You knit me together in my mother’s womb” –- over Haley since before her birth, praying that God would knit her skull together, bind her, heal her.

“Just the words he had used, that he had knit them together, God was showing us all over again how much He loves us,” Lynel said. Jeff added, “… And that He was in control.”

Perfect in weakness

The Willises second daughter, Brynna Grace, was born in 2008. “For a 4-year-old, she can be pretty deep sometimes,” Jeff remarked. “She’s always thinking and she’s very detailed — she picks up on things in a whole different way. She’ll ask me about my hands.”

He responds to his daughter’s questions by telling her, “God made me special and gave me the opportunity to share about how He made me….” There’s no physical connection between Jeff’s condition and Haley’s, but he does see a spiritual connection.

“The whole thing points back to Scripture –- in our weakness, He is made strong,” Jeff said, referencing 2 Corinthians 12:9. Haley is “a little girl who shouldn’t be here, let alone functioning at such a high level, and how God uses her in her weakness … the minute she walks into a room and just wins them over. People are drawn to her for some reason.”

As she looks toward her milestone 10th birthday, Haley is a student in a regular third-grade classroom. She gets special help during the school day for reading and math, and she walks on her own with a walker or her recently-acquired crutches. She’s a big sister to Brynna Grace, 4, and Roslyn Joy, 3. And she’s a teacher. For the past several semesters, Haley and Lynel have served as guest lecturers in a class for future special education teachers at Southern Illinois University in Carbondale.

Lynel also has connected with other families with kids like Haley, communicating with them through Facebook, where she has documented Haley’s story, and even in-person visits. As the Willises talk with families facing a diagnosis like Haley’s, they encourage expectant couples to see the pregnancy through — and see what God’s going to do.

While Haley’s case is definitely miraculous and not the norm, Lynel counsels, “[E]ven if you don’t get the baby that you hope for, and you don’t get to keep your baby, that doesn’t mean that God isn’t trying to show you something, to do some great things in your life.”

The Willises learned the same lesson 10 years ago when, against all odds, they chose to stick with a pregnancy that almost everyone else thought was hopeless. “It really started dawning on us that what God was doing in our lives and through our lives as we went through this difficult trial,” Jeff said, “It wasn’t in the outcome of whether Haley was going to be alive when she was born, but that He gave us the peace, and let us minister to people.”
Meredith Flynn is managing editor of the Illinois Baptist, newsjournal of the Illinois Baptist State Association (ibsa.org), where this article first appeared.

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  • Meredith Flynn