At just two weeks of age, Jaxson Jones’ tiny body shows clear evidence of a complicated journey: a five-inch scar lines his chest. His rough start to life was made smoother by the expertise of the Fetal Center at Riley Children’s Health. This program, supported by donations through Riley Children’s Foundation, provides expectant mothers whose babies are prenatally diagnosed with a birth defect a comprehensive “one-stop-shop” approach to care from the very beginning. The Fetal Center wrapped its arms around Ashley and her husband Jon when they learned their son would be born with complex heart problems.
Jaxson’s scar is from surgery to diminish the effects of a heart defect called Hypoplastic Left Heart Syndrome (HLHS.) His heart’s left side failed to develop, and the right side of his heart was doing all of the work. “A 24-week echocardiogram confirmed the diagnosis,” said Ashley. As a former NICU (Newborn Intensive Care Unit) nurse at another local hospital, she never thought she’d experience the bitter irony of herself having a newborn needing intensive care. Ashley and Jon weighed options and ultimately decided Riley Hospital was the right choice for their son’s needs.
Sherrine Ibrahim, M.D., a Riley Maternal-Fetal Medicine Specialist, was the first of many doctors who cared for Ashley. (Indiana previously faced a shortage of these highly specialized obstetricians who oversee high-risk pregnancies, but Riley Children’s Foundation is raising money to recruit and support a staff of 12.) Dr. Ibrahim laid the groundwork for a hit-the-ground-running approach the moment Jaxson was born. She and the Fetal Center team walked the family through plans for the three surgeries Jaxson would need.
The first hours after his birth were exceedingly tough for Ashley since she couldn’t immediately follow her son to Riley, but the experience became an example of the compassionate, family-centered care that defines the hospital. “Dr. Trautman talked me off the ledge,” said Ashley. Riley Neonatologist Michael Trautman, M.D., calmly and confidently spoke with her about everything that was happening to Jaxson at Riley as she recovered from childbirth.
Soon after, questions came fast and furious for Riley Pediatric Heart Surgeon Mark Turrentine, M.D., who serves as co-director of Riley Heart Center. “He never hesitated to take a call, answer any question,” said Ashley. “He is an angel here on Earth. He refers to the kids that he operates on as his babies.”
That personal connection is paired with a level of clinical expertise that’s expected from a top-tier pediatric research hospital such as Riley. Dr. Turrentine alone does over 300 surgeries a year. “Dr. Turrentine is revolutionizing Jaxson’s surgery,” says Ashley. “He is doing more and more and finding out what works best for these kids.”
And what works best is working for Jaxson. His alert blue eyes belie the fact that he’s a heart baby. “With every treatment or procedure, we’d be told what the best case scenario was,” says Jon. “And for Jaxson, he hit that best case every time.” He even went home without a feeding tube―an achievement reached by less than 10 percent of babies born with his heart condition.
Jaxson’s success is a testament to how well the Fetal Center does its job. “It has demonstrated a particularly strong ability to plan and prepare for patients,” says Riley Pediatric Cardiologist Timothy Cordes, M.D. “There is a level of planning that the family is not even aware of, and a level of integration at The Fetal Center that is much higher than ever before. Because Jaxson was diagnosed so early, a team was put into place.”
For Jaxson, a rough start to life didn’t have to take away from the hope of a bright future. He was, his parents believe, exactly where he needed to be.