The doctors were trying to explain to parents Stephanie and Rory Starks about their desperately ill new-born girl, Jemma. But the words were incomprehensible, alien techno-babble. “They said she had pulmonary atresia with an intact ventricular septum. Those words were hard to understand. We were like ‘what?’,” said Stephanie Starks. “They tried to explain that a ductus was supposed to open and it didn’t. What’s a ductus?”
This is sometimes called “missing half a heart,” which only made the parents even more afraid. Just 24 hours before, Starks had given birth during an event-free, home-based procedure to what was thought to be a healthy, eight-pound child. Fifteen hours later that same bundle of humanity was being rushed to Phoenix Children’s Hospital, struggling to breath and live.
The problem for the cardiac specialists and surgeons was not diagnosis; they knew what it was. The problem was how to fix this little girl’s heart. The problem for the parents was understanding what, exactly, was wrong with her heart. Would she live? If so, would she have a normal life?
Enter 3D printing, which in 2013 was just getting started at Phoenix Children’s Hospital.
Its new facility created 3D replicas of human organs from MRIs and CT scans. 3D printing a copy of Jemma’s defective heart was crucial when, eight days after being admitted to the hospital, Jemma and her surgeons were ready for her first operation. “There is nothing quite like handing over your baby to a surgeon, even though we instantly trusted him,” Starks explained. “We were still trying to figure out what this meant. She was gone for several hours and it was just horrifying.”
Then, much to their relief, an attending cardiologist came to meet with them. He explained to the family that the surgeons had already been practicing on Jemma’s heart, using a 3D replica that came out of their then-new 3D printing lab. “He showed us one; it was color-coded and just beautiful,” explained Starks. “It was incredibly empowering.” The cardiologist showed a small area in the back of the model heart, color-coded green, where the surgeon was going to place a shunt to get blood and oxygen flowing. The fact that the surgeon had used a model to practice the procedure gave Starks vastly more confidence in Jemma’s future. “And it was such a small part of the heart, not at all the description of ‘missing half of her heart’,” she said.
Jemma is now a thriving eight-year old, with no restrictions on her activities, according to Starks. She proudly shows off “her heart” to friends, family, and inquisitive journalists. And almost always with a healthy smile.
Editor’s Note: Given the remarkable outcome of their daughter’s condition, the Starks family formed a small non-profit arm connected to the Phoenix Children’s Hospital Foundation. “It is called ‘Heart Effect’ because Jemma couldn’t say ‘Heart Defect’,” explained Stephanie Starks.
For further information, visit: https://phoenixchildrensfoundation.org/giving-groups/heart-effect/
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