Fourth-grader marks 500 days waiting for heart transplant

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

Five-hundred days.

That’s how long Ava Graham has been at Riley Hospital for Children waiting for a heart transplant. Actually, today marks 501.

When she arrived in the spring of 2022, she was in the second grade. Since then, she has completed second and third grade and recently started fourth grade under the tutelage of Riley educational liaison Lindsay DeWilde.

Last September, Ava celebrated her ninth birthday with a small party at Riley. Next month, she’ll celebrate again with family and close friends at the hospital when she turns 10. She has chosen Zelda as her birthday theme.

Jackie and Jami Graham of Indianapolis never dreamed their little girl would still be waiting, nor that they would still be in limbo, seeing each other in passing as they take turns staying with their daughter for days and nights on end.

But because of the medications and treatment Ava receives, it’s safer for her to remain in the hospital while she waits.

“We’re here for the long haul,” Jackie Graham said last week.

It’s something they committed to early on – to give Ava the best chance at transplant – but the couple thought it would be a matter of weeks or months.

Last April marked one year.

Ava, who was born with hypoplastic left heart syndrome, is a veteran of many surgeries, but so far, transplant eludes her. She has high levels of antibodies in her blood, making it hard to find a suitable donor.

“We’ve had upwards of 20 offers, but none were the right one,” said Jami Graham, who updates Ava’s followers on the Facebook page Amazing Ava, Heart Warrior.

Surgeons won’t accept a heart that’s less than a perfect match for their patient due to the risk of rejection.

Still, Jami said, “she could get a heart anytime.”

So, the family stays ready, as does transplant cardiologist Dr. Robert Darragh, transplant coordinator Debbie Murphy and the surgical team.

How does a 9-year-old deal with this lengthy wait, spending birthdays and holidays in the hospital while her beloved cats wonder when she’ll come home?

She keeps herself plenty busy – playing video games, watching movies, doing her physical therapy and making friends with patients and care team members.

“She’s pretty smart,” Jami said. “She understands why she’s here and why it’s taking longer because of these antibodies. She knows why we had to give her some chemotherapy drugs to try to lower the antibodies and how bad it’s made her feel. She gets it.”

The almost-10-year-old has been around adults a lot, her mom said, and she listens when they talk.

She’s also watching and waiting. Waiting for her turn even as friends on the transplant unit are matched with hearts and she has to say goodbye.

“I think it’s getting harder for her,” Ava’s mom said. “For us, it’s bittersweet. We get so excited for the families that get the call, but we do wish that it was our turn.”

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

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

Previous stories:

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.

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.