From her life-saving medical procedure at Riley to sophomore year at IU: the story of Bailey Hunsberger
In her jeans and sneakers, with her straight blond hair pulled back in a ponytail, Indiana University Bloomington sophomore Bailey Hunsberger looks every inch the typical college student. Her hipster glasses have a little tape holding them together on one side, she's carrying a Starbucks cup, and her backpack is loaded down with books for the five classes she's taking this semester as a biology major.
But Hunsberger isn't like every other student: The fact that she's alive and healthy today is something her parents prayed for from the time of her first open-heart surgery, when she was just 3 days old.
Within 14 hours of her birth in 1992, doctors diagnosed the seemingly healthy baby with aortic stenosis, a defective aortic valve that allows blood to back up into the lungs.
"The first surgery wasn't really a correction, but a 'do now, fix later,'" Hunsberger said during an interview with IU Home Pages in late January. "They had to wait for me to grow. My next surgery was just before I turned 4."
For the next eight years, Hunsberger lived a pretty normal life: She went to school, played soccer, hung out with her two younger sisters and excelled at gymnastics. Typical childhood maladies -- ear infections, colds -- landed her in the hospital occasionally, but her heart was working fine until the summer of 2004, soon after she turned 12.
Hunsberger began noticing problems with the rhythm of her heart; her petite 60-pound body was descending into heart failure. Just before Christmas Eve, her parents met with her doctor at Riley Hospital for Children at Indiana University Health, Mark Turrentine.
Turrentine, the director of Pediatric Cardiothoracic Surgery at Riley at IU Health and a professor of surgery at the Indiana University School of Medicine, added his young patient's name to a heart transplant waiting list.
The Berlin Heart
Because she was getting so sick so quickly, he also applied for use of the Berlin Heart Pediatric Ventricular Assist Device from Germany -- then not approved for use in the U.S. -- as a backup measure.
When a donor heart isn't available during the end stage of heart failure, implanting a mechanical pump -- most of which remains outside the body, connected through implanted tubes -- is often the best way to keep a patient alive. A ventricular assist device takes over the function of the damaged ventricle of the heart to restore normal blood flow. While many similar devices are designed for adults, few are available in the United States for children and infants. The "Berlin Heart" (manufactured in the German city) comes in various sizes for a range of children, from newborn babies to teens. First used in the U.S. in 2000, the Berlin Heart takes over the heart's work of pumping blood.
"There was a big change from that meeting to my pre-op appointment only a month later -- I had gained so much water weight from my heart not functioning that one-third of my body weight was in water," said Hunsberger, who had gained nearly 10 pounds in a month. The decline was happening so rapidly, she recalls, doctors knew they couldn't wait for a transplant, which could take anywhere from a few weeks to a few months.
That's when Hunsberger's medical team turned to help from the Berlin Heart, which they received special permission to use. This was the third time Riley at IU Health had received permission for the device before its recent FDA approval for use in the U.S.
Hunsberger was nervous when she found out, but her family knew it was her only hope for survival. "My fear was not really of dying, but of being sick -- not knowing what was going to happen," she said.
At age 13, in 2005, Hunsberger received Riley at IU Health's third Berlin Heart implant.
Though her doctors had received permission for use of the heart, because it hadn't met with FDA approval, she had to live at the hospital for six months, under constant monitoring, with a food tube running from her stomach to the machine.
"There wasn't a wide range of motion, but they keep you really busy," she said. Hunsberger did schoolwork with Riley teachers and had daily visits from Child Life, a program of IU Health that uses therapeutic activities to address the patient and family's social, emotional and educational needs. "I could walk around the hospital," she said. "There was physical therapy, occupational therapy, music therapy … and I always had visitors. My family and my sisters would visit almost every day."
'Heart to Heart'
A film crew captured the moment Hunsberger's parents made the decision to try the Berlin heart in the documentary film "Heart to Heart" (Indianapolis Motor Speedway Productions), a 46-minute film narrated by Patrick Dempsey.
"She's the bravest person -- child or adult -- that I know," her mom, Angie McGraw, says in the documentary, wiping away tears before the implantation of the Berlin Heart. "Kids are so innocent. They don't deserve a lot of what they get. She's a miracle baby, several times over."
It was a few years before she felt she could watch the whole film, Hunsberger said. "I was probably 14 when I saw part of the documentary -- that's when I really found out how sick I was. I couldn't watch the whole thing until I was 15 or 16."
Though Hunsberger's life wasn't typical for a teen, her personality was. She had a huge crush on Patrick Dempsey, aka "Dr. McDreamy" on the TV medical drama "Grey's Anatomy." One of her nurses even plastered the wall of Hunsberger's room with photos of the handsome actor.
Soon after her 12th birthday, a couple of weeks before the Indy 500 race in Indianapolis, Dr. Turrentine -- or as she calls him, Dr. T -- tried a new medicine with Hunsberger that made her feel horribly sick.
"Dr. T comes in my room and he's like, alright, come on, we've got to go for a train ride," she recalled. The doctor sometimes took her with him on his rounds at Methodist via the People Mover at IUPUI. "I'm lying in bed like, 'I'm not going anywhere.'"
In came a "new guy" during the argument, wearing a surgical hat, scrubs and face mask. "New guys always frustrated me because they usually didn't talk, but if they did, they'd ask me questions I'd already answered 500 times," she said.
This particular new guy gestured to the Patrick Dempsey photos on the wall and said, "Who's this guy?"
Hunsberger, feeling sick and frustrated with her doctor, snapped a little, annoyed that the medical intern was even speaking to her.
"I was like, 'That's Patrick Dempsey, don't you know?' And then the cameras come in and he pulls down his mask and it's Patrick Dempsey! He was in town for the Indy 500. I look at my mom like, 'You guys are so mean!' I don't think I've turned a darker shade of red in my life."
Dempsey took the incident in stride, becoming a phone friend for Hunsberger and sending her flowers. "He was really, really nice," she said.
In the days, weeks and months following the implantation of the Berlin Heart, Hunsberger's own heart was slowly improving and becoming stronger. After nearly six months of support and tests in the cardiac catheter lab, the Berlin Heart was removed; soon after, Hunsberger was approved to go home.
Life continued normally until Hunsberger's heart began failing again during her sophomore year of high school, sending her back for what she hopes was a final surgery.
'Celebrate all the little things'
Now a sophomore at IU, Hunsberger is maintaining good health. She has monthly lab tests in Indy and full checkups at Riley at IU Health every few months. There are a few no-no's -- Hunsberger can never do contact sports, be around people who are smoking, lift weights or have children (her body couldn't handle the stress), but she can ride her bike, do yoga and enjoy a fulfilling life.
Hunsberger will live her life in Indiana, within driving distance of her doctors. Unlike many Riley patients, who transfer away from the children's hospital in adulthood, Hunsberger has been told that she'll likely stay a Riley patient her entire life.
In the summer of 2010, Hunsberger entered IU Bloomington, her first choice for college through an Intensive Freshman Seminar course. The three-week campus immersion class she selected? "The Trouble With Medical Miracles," which covered cell structure, cloning, cancer and DNA.
Hunsberger wasn't going to mention her medical history to her new friends at IU. A bike accident changed that.
"My mom brought my bike down, and it wasn't here 24 hours when I wrecked it. I banged my head, cracked my face … it was a mess." When she told her friends to call 911, they at first thought she was being dramatic and told her to calm down. "I was like, 'You need to call, I'm on blood thinners!'" They did, and "then everyone found out that I was a Riley story," she said.
Hunsberger was initially planning to study medicine at IU, but she feels like she's spent enough time in hospitals in her life.
Instead, she will pursue a career in forensic science. "I'm really into the way you can find clues looking at little bitty things that no one else would think of. It's cool to know that you can find answers in such small things."
At IU, she lives in a biology-health science learning community in Ashton Residence Hall. "I like the atmosphere of IU a lot," she said. "I love the old buildings -- I can walk anywhere and find a nook to study in." In addition, her surgical nurse happens to live 10 minutes away from Hunsberger's residence hall. "Having her here was a huge draw -- she's the best surgical nurse, and she's become kind of part of my extended family."
Hunsberger is practical about the fact that she may, one day, go back into heart failure. But instead of living her life from a place of fear, she appreciates what she has.
"It's always been the little things that are awesome to me. It's like that with my family too. They might not have been the one who was sick, but they did have a daughter or a sister who was sick. We all kind of celebrate the little things. You can't stress over anything you can't change."