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Thanks to care from Riley, Lulie is thriving

Lulie James

Adam and Ashley James say all appeared normal 20 weeks into Ashley’s pregnancy. But at a routine checkup, doctors noticed something was wrong. Prenatal testing detected a diaphragmatic hernia tear in their developing baby daughter’s abdomen. The tear allowed internal organs to move upward into the baby’s chest, putting pressure on one lung and causing other complications. “They noticed from the ultrasound, the stomach wasn’t where it should normally be,” Adam recalled.

Doctors referred the James family to Riley Hospital for Children in Indianapolis. A team of Riley doctors in Fort Wayne and Indianapolis came together to prepare for the baby’s delivery and subsequent surgery.

“It was just incredible. They brought us down for an entire day,” says Ashley on the trip to Indianapolis. “They brought every single doctor or specialist who would come in contact with her to discuss exactly what would happen step by step, as soon as she entered the world.”

Adam added, “We were just overwhelmed with everything, but the care meeting where you meet with all the doctors and they tell you what’s going to happen, is just amazing.”

On November 7, 2019, Lulie was born. Six days later, she underwent surgery to repair the tear and begin the healing process. She spent ten weeks at Riley Hospital for Children recovering. She’s had two surgeries since then to maintain the patch surgeons put in place.

Now age 2, Lulie is thriving. “She's doing so great,” says Ashley. Lulie only needs to see her surgeon annually since her condition has improved so much.

Lulie’s Riley journey inspired Adam and Ashley to find a way to give back. Adam joined the board of the Fort Wayne Riley Philanthropy Council and now actively works to provide donor support for Riley’s Fort Wayne services as well as donor-funded services at Riley’s new Maternal Fetal Medicine Tower in Indianapolis. “I always tell people I hope your children never have to go through any stay at a hospital or go down to Riley,” says Adam. “But, to know that we have that kind of care in Indiana is huge.”

Ashley says the Fort Wayne clinic is a tremendous convenience when Lulie has appointments. “To have her checkups in Fort Wayne is a huge help, especially for a family of two working parents. Making a two-plus hour drive for every appointment is a daylong commitment. So having the Riley clinic in Fort Wayne has been amazing.”

Ashley and Adam say they will always remember the attention and care from the Riley team of Neonatal Intensive Care Unit nurses. “They cared for Lulie, and they fought for Lulie. They were with her for twelve hours at a time and they knew her as well as anybody,” says Adam. Ashley added, “We are so thankful for them, as well as the doctors and surgeons. They will always be family to us. We’re so grateful that we have such special people so close to home. They will always have a special spot in our hearts!”

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Riley Blogger

Riley Children's Foundation

The Riley Blog is written and/or edited by members of the Riley Children's Foundation communications team.