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Antley Bixler Syndrome: The Inside Story

image of baby with antley bixler syndrome
They found out their 2-week-old son was only the 105th person to ever be diagnosed with Antley-Bixler syndrome, a rare genetic disorder.

Breck Engle sent up a quick prayer to God. “You have to be near right now!” Doctors had just told Breck and her husband, Jacob, that their 2-week-old son, Louis, was only the 105th person to ever be diagnosed with Antley-Bixler syndrome, a rare genetic disorder. The syndrome made the bones in his face develop differently, and there would be plenty of surgeries ahead. No one could tell them how long Louis might live, either.

Breck wondered, What is going to happen to our baby? What will his quality of life be?

Servant Hearts With Antley-Bixler Syndrome

2020 had already been a rough year for the Engles. The couple had been planning to move to Asia for ministry work. Louis, their first child, was even supposed to have been born there.

But then the COVID-19 lockdowns came, and the Engles weren’t allowed to leave. They’d been hopeful that things would open back up—until Louis’ diagnosis. There was no way their son could get the advanced medical care he needed in a developing nation.

“It was shock and trauma all wrapped in one,” Breck says.

Our world was shaken.

Their medical crash course with Louis was far from the life Breck and Jacob had grown up with. She was born in Bangkok, Thailand, as a missionary kid. Jacob grew up in the States as a pastor’s kid. Both were passionate about sharing the Gospel with others. They met at a missions school, each immediately attracted to the other’s devotion to service. They married in 2019.

“In our youthful zeal, it was just about whatever the Lord called us to,” Jacob says. “It really did bring us so close together because we knew what we were about.”

By October 2020, Jacob and Breck were not only concerned about their newborn’s future, but they also had to pause their entire vocational trajectory. “Thankfully, we were encouraged by people we really trusted to be present and in the moment for Louis, and to not worry about what the future would hold,” Jacob says. “That really helped us see our son and family as our top priority.”

A Beautiful Smile

Little Louis had to get a tracheostomy to help him breathe, a feeding tube to help him eat and a colostomy bag to help him excrete waste. There were surgeries, therapies, endless appointments with specialists and lots of hospital time.

Even so, Jacob and Breck decided that they weren’t going to treat Louis any different than a child without special needs. They took him on hikes, lugging along his medical equipment. They showed him off to friends and on social media, proud of his beautiful smile. They tossed him in the air and tickled his tummy on the living room rug.

“It was inconvenient and hard, but we wanted to do life with Louis,” Breck says. “It was a huge learning curve, but so worth it.”

Yet Jacob struggled with anger, especially after Louis would vomit over and over. How could God allow a beautiful, innocent child to suffer? Why couldn’t Jesus just heal him? It didn’t help that people online occasionally mocked Louis’ looks.

“I struggled to believe that God is good,” Jacob admits. Yet the new dad also saw small patches of that supernatural goodness, especially when Louis, whom Breck describes as completely besotted with his dad, smiled.

“He would go through so much pain with the hospital visits and needles, but the fact that Louis could still smile afterward was a reminder to us of God and His joy,” Breck says.

In the Midst of Pain

Even after Louis was diagnosed with Antley-Bixler, doctors told the Engles that his prognosis could be good. But then came several medical complications.

“His little body just couldn’t handle them,” Breck says. Louis Van Engle died Nov. 27, 2021, at almost 14 months.

“Why God?” Breck and Jacob would ask over and over. “Why couldn’t Jesus have stopped it?” But then moments when Christ felt so close kept coming to each of them. God was carrying the Engles when they were too weak to stand. 

“I had this sense that heaven was watching us,” Breck says. “It was like God was telling His angels, Look at My daughter who is choosing to interact with Me in the midst of her pain.” On hard nights, the idea of heaven watching her and Jacob soothed her grief.

The couple leaned on each other and their faith through their mourning. They weren’t in Asia; they weren’t watching Louis grow; they had no idea what was coming next. But they gradually began to see the truth of something Jacob’s dad often said: God was writing the story of their lives. They just couldn’t see beyond this current chapter.

“When I look back at it all, there’s nothing more to be said than that it was God’s grace and people praying for us that we survived,” Jacob says. Slowly, Breck began to see patches of hope, and she became pregnant again, this time with Louis’ little sister.

Woven Together by Antley-Bixler Syndrome

Today, Jacob works for Every Home for Christ, an international missions organization. Breck works as a seamstress and owner of an online upcycled textiles shop called ReWoven. She posts her creations—and memories of Louis—on her popular social media accounts. Both Jacob and Breck are adjusting to life with a newborn again, this time with Louis’ little sister. Her name is Lilias, after Lilias Trotter, a 19th-century missionary to Algeria.

“We wish her brother could be here to meet Lilias,” Breck says, “but God is still good.”

And that dream of serving the Lord together overseas? It’s still alive. But this time, that dream is accompanied by a newfound love for Christ.

“We love people better now because we were able to love Louis first,” Breck says. “I never would have chosen this in my flesh, but I think I can see now how the Lord answered the prayer of my heart from so long ago, to love a group of wounded women and mothers that I never would have had the capacity to love if I hadn’t gone through this pain myself.”

The goal is simple, Jacob says: to make Jesus known, whatever that may look like. God may have led them down paths they never wanted nor anticipated. But like one of Breck’s upcycled creations, it has only served to weave a more beautiful life tapestry together than they could ever have imagined.

“Louis and his suffering really represented to us the humanity of Jesus, and God is good no matter how that looks here on earth. That’s the truth that Louis showed us.”

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