Grateful parents donate to help other families who face the loss of a child

Twenty-two weeks into her 2015 pregnancy, Jayme Henchon and her husband Dave received news no expecting parents want to hear. After a routine ultrasound and multiple visits with a specialist, their daughter Harper was diagnosed with not one but two life-threatening conditions.

The first diagnosis was a congenital diaphragmatic hernia, a rare condition in early pregnancy that leaves a hole in the diaphragm, allowing abdominal organs to enter the chest cavity. A short time later they also learned that Harper suffered from hypoplastic left heart syndrome, a congenital heart defect in which the left side of the heart doesn’t fully develop and is too small to function properly.

Though discouraged, the Henchons still wanted to carry Harper to term.

“We never wanted to give up on her,” Jayme said.

Little Harper did her part. She came out fighting. Still, the Henchons said, it was clear within minutes that her life wasn’t sustainable. A ventilator allowed them to spend nearly two hours with her along with family.

“After Harper passed away, we spent three days in the hospital,” Jayme said. “Our nurses were incredible and went above and beyond the call of duty. One nurse in particular created artwork, which we’ll always treasure. Canvases of her hand and footprints were designed for our family. Many of these pieces are displayed in our home. Casts of her hands and feet and Christmas ornaments are also cherished. The nurses spent so much time in our room caring for us and creating this artwork.”

“With a diagnosis like this, you start to prepare yourself for the worst outcome,” Dave said. “But you never think about collecting mementos that will allow you to remember your daughter long after she’s gone. That type of care wasn’t even on my radar. The experience the nurses had working with bereaved families allowed them to create memories they knew would last a lifetime. It takes a special, caring person who wants to do that. It helped our grieving process so much and allows us to remember her.”

While the Henchons say they can never adequately thank their care team, they show their gratitude by donating to IU Health Foundation in Harper’s memory each year around her birthday.

“We just want to help others have the same experience we had,” Jayme said. “We never imagined any of this. While we weren’t leaving the hospital with our daughter, we carried all these precious momentos home with us. We want to ensure other families have the same experience – whatever helps with their grieving or loss. We want to support that.”

The Henchons’ gifts in Harper’s honor have earned them membership in IU Health Foundation’s Leadership Annual Giving Society, a group whose annual support of $1,000 or more serves as the bedrock of a healthy, sustainable future for healthcare in Indiana. To join the Henchons in making All the Difference in support of a healthier Indiana and to discuss a healthcare initiative that aligns with your philanthropic goals, contact Mary Leer, Leadership Annual Giving Society manager at 317.965.8155 or mleer@iuhealth.org.