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Laney Ledbetter's Story

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Posted 10/13/2014

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It started at the age of six. All he needed was a ball and glove. Baseball was life. "Dad coached me, and my mom played catch with me in the backyard. It was a whole family deal." Growing up in Lawrence, Kan., Curtis Ledbetter's passion for the game only increased with age, and started to shape his future. "It's what I wanted to do. The sport I wanted to pursue in college." After playing one season at Garden City Community College, Curtis transferred to the University of Nebraska-Lincoln. He was a three-year starter, earning first-team All-Big 12 honors. During his senior year in 2005, Curtis earned Big 12 Tournament MVP honors, and helped the Huskers win their first College World Series game in school history. After graduation, Curtis was drafted by the Seattle Mariners. He played three years of professional baseball before moving back to Lincoln. That's when a once-in-a-lifetime opportunity came his way. "I was offered the position of Director of Operations for Nebraska baseball. My first interview for the job was with Coach Tom Osborne. Pretty neat experience. Made for one heck of a story." In 2009, Curtis' story got even better. He proposed to his girlfriend, Monica on April Fools Day. "Gives you a good understanding of our relationship," he laughs. The two were married a short time later, and started trying to have a baby. "After about six months, nothing was happening," explains Monica. "We sought help, and found out that we have male factor infertility, which affects 40 percent of couples. But, we were determined to have a family." On January 12, 2013, the Ledbetters' dreams of having a baby finally came true. Monica gave birth to their daughter, Laney at 12:27 p.m. "There's nothing like that feeling," a teary-eyed Monica remembers. "You talk to people who have children, but there's nothing like meeting that person you've been connected to for nine months. It's joy. Absolute joy." Unfortunately, four months later, joy turned to panic. It was May 16, 2013. Monica and Curtis were both at work, when they received a call from Laney's caregiver. Their daughter was having a hard time keeping liquids down, and had no energy. Something was wrong. The next morning, Laney wasn't doing any better. Monica rushed her to a hospital in Lincoln. Doctors discovered Laney had a massive brain bleed. She was quickly hooked up to a ventilator and flown by helicopter to The Nebraska Medical Center. "I was in shock. I didn't know how to act," admits Curtis. "Monica went in the helicopter with Laney, and I drove to Omaha not knowing if I'd ever see my daughter alive again." When Laney arrived at the med center, Kenneth Follett, MD, chief of neurosurgery, informed the couple that their daughter needed emergency brain surgery to stop the bleeding. "A blood clot was placing pressure on Laney's brain, and it caused one side to shift to the other side of the head," says Dr. Follett. "We occasionally see children with this, but what was remarkable in Laney's case, was the sheer size and effect it was having on the brain." Once they took Laney to the operating room, doctors also discovered her INR (the measure of the blood's ability to clot) was above 7, the highest INR any surgeon in the room had ever seen. "A normal INR is 1," explains Dr. Follett. "People who have a stroke typically have an INR of 2 or 3. Laney's was exceptionally high, especially for an infant." After surgery, the next 48 hours were critical. A large team of doctors and nurses worked together, trying to figure out what caused the brain bleed in the first place. A blood test proved, Laney had no Vitamin K in her blood. It was the turning point that eventually led doctors to a rare diagnosis. "Laney was diagnosed with Progressive Familial Intrahepatic Cholestasis Type 2," explains Monica. "Her liver doesn't produce bile and move bile the way it should, allowing Laney's body to absorb all the nutrients it needs. Unfortunately, the lack or build-up of bile means, her liver cells are choked off and eventually start to die. In order to survive, Laney will need a liver transplant." While doctors still aren't sure when Laney will need a transplant, the Ledbetters are relieved to know, a plan and team of doctors are in place. "Our head baseball coach, Darin Erstad, has a saying, 'You're either in the bubble or you're not,'" smiles Monica. "Baseball life is a different life. You have people that you know you can open your life to. Now that bubble includes our nurses, doctors and surgeons at the med center. They helped us heal emotionally, mentally and physically for our daughter. I don't know if we would have had that experience anywhere else... they're in our bubble now."