#AmazingAva goes home with a new heart

By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

For 19 months, she waited.

And waited and waited.

Finally, after 579 days on the Heart Center at Riley Children’s Health, 10-year-old Ava Graham -- #AmazingAva – went home Monday with a new heart and a new life waiting to unfold.

Dozens of Riley team members, medical students, friends and family lined the halls to celebrate Ava as she walked out of her hospital room for the last time.

With “Bang” playing in the background and the crowd shaking maracas, hand clappers and pom poms, Ava walked with her parents, Jack and Jami, to the elevator before one last goodbye.

For the Grahams, the last few hours waiting to be officially discharged might have been among the hardest in this long, arduous journey.

“I’m ready to get out of here, ready to go home and start a new life,” Jack said as he finished packing up his daughter’s room, including her beloved dinosaurs and dragons, monster slippers, posters, artwork, toys, blankets and iPad.

“It’s overwhelming,” Jami said, admitting to some nerves even as she looked forward to spending their first night at home together since April 2022. She planned to make spaghetti for dinner and let Ava enjoy her redecorated bedroom and reunite with her two kitties.

Ava was born with hypoplastic left heart syndrome and underwent multiple heart surgeries. When doctors determined she needed a heart transplant, her care was moved to Riley, where she waited longer than anyone in the unit’s history for a hero heart.

Transplant cardiologist Dr. Robert Darragh and transplant coordinator Debbie Murphy have been by Ava’s side since that first day, working behind the scenes to match Ava with a heart, a challenge made more difficult by Ava’s high level of antibodies.

“At one point, her antibodies were at 98 percent, which means that she could only match with 2 percent of the population,” Jami said. “It was like finding a needle in a haystack.”

The transplant team had multiple heart offers for Ava last year, but none was a good enough match. When those offers began to dry up, the Grahams wondered if they’d ever be able to take their little girl home.

But then they got that magical call on the last weekend in October.

Day 555. A heart was on its way.

“It was very surreal when we got word,” Jami said. “It had been so long we weren’t sure it was ever going to happen.”

With the clarity of someone now on the other side of transplant, Jami said she learned you have to trust the process.

“You don’t have any control. You have to take it day by day.”

Even when it’s 555 days.

So many days and weeks and months of waiting before getting word that another family has made the selfless decision to donate the heart of their loved one and that heart is perfect for a little girl in Indiana.

“I feel a tremendous amount of relief for them,” Murphy said as she and others signed Ava’s heart pillow while waiting for the farewell parade to start. “Their long wait is over, and their new life is starting. It’s a blessing that she got this heart, and it’s a good one.”

Dr. Mark Turrentine procured the donor heart, while Dr. Mark Rodefeld and an operating room team of experts completed the transplant surgery Oct. 28.

Five days later, Ava was walking the hallways of the CVICU, supported by IVs and multiple team members, as she did a little post-Halloween trick-or-treating on the unit.

That’s the kind of spirit that endeared her to nurse Tyler Fromer, who took care of her often during her first year at Riley. Fromer, who now works as a traveling nurse, came in on his day off Monday to congratulate her.

“You look so pink,” he said as she greeted him with a hug. “I heard you were leaving, and I had to come by.”

Also on hand to see her off was Jenna Yarnell, manager of Child Life Services.

“I’ve worked at Riley for over 11 years, many of those on the Heart Center, and I’ve never worked with a patient who’s been here as long as Ava,” she said. “So to see her finally going home is amazing.”

It’s hard to live in a hospital for 19 months, but Ava has been a rock star, she said.

“I think we’ve all learned a lot from her about what it’s like to persevere and show everyone what you’re made of. The psychosocial team (Ava calls them her dragon slayers) has found ways to support her that we’ve never done before. We’ve learned a lot about what it looks like to support a child who’s living in the hospital … and meeting her where she was each day.”

And one more thing, a nod to one of Ava’s passions, Yarnell said.

“We learned a lot about dinosaurs and dragons along the way.”

Riley Children’s Health is ranked among the best in the nation for its cardiology and heart surgery programs.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Previous stories:

Fourth-grader marks 500 days waiting for heart transplant - Ava Graham has been inpatient at Riley for 16 months as doctors and transplant coordinators work to match her with the gift of life.

Birthday bash celebrates girl waiting for “hero heart” - Nine-year-old Ava is surrounded by those who hold her close in their own hearts as she marks five months on the transplant list.

Amazing Ava waits for a new heart - The girl with her own hashtag is making herself at home in the hospital for as long as it takes.