Millie needs a new heart, but her humor is intact

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Amelia “Millie” Modesitt likes to pull a chuckle out of the physicians and residents who visit her hospital room each day, trading jokes and riddles.

“How did the doctor cure the invisible man?”

Drum roll please.

“She took him to the I-C-U.”

Millie, the daughter of Mitch and Candra Modesitt, is the type of child who seems to make the best of any situation.

The 9-year-old has been stuck in the hospital since September when her heart began failing, even with the three pacemakers she’s had implanted – the first on the day she was born.

Now the little girl with the big personality is waiting for a heart transplant. She spends her time on 3 West at Riley Hospital for Children doing things kids her age do, but in a totally different setting.

Millie goes to school at the hospital, practices piano at the hospital, participates in dance movement therapy at the hospital, tries her hand at art projects from her room in the hospital and keeps a daily schedule of physical, occupational and recreation therapy.

Dance movement therapist Breanna Davis meets with Millie on Thursdays for adaptive dance therapy, using charades, music and lots of laughter to engage the child in strength and movement exercises, keeping in mind that the Berlin Heart that Millie is tethered to makes full-on dancing difficult.

Riley was a pioneering hospital for the Berlin Heart. In 2003, Dr. Mark Turrentine was the first surgeon in Indiana (and the second in the nation) to implant the lifesaving device in a patient. It acts as a “bridge to transplant,” pumping blood for a failing heart while a patient waits for a transplant.

Like many kids on the Heart Center, Millie has named some of her equipment: Her IV pole is Luna, her heart pump is Rosie, and the big machine that goes with her everywhere is Bingo. Bluey is the backup.

She brings it all with her to the teen room on 3W for her dance therapy session, requiring Davis to do some furniture rearranging, but the two make good use of their space and time.

“Millie likes to be very active, but being connected to all these things means she can’t move the way she wants to, so we try to find different ways we can move,” Davis said, and they take imaginary trips to far-off destinations in their “car” made of chairs.

“Sometimes it might look silly … but we are building strength in a fun way … and it’s in the little moments that we grow.”

There is also a mental health component to the work they do together, said Davis, who helps patients feel supported in the hospital but also feel “confident and brave.”

It was a rare Monday recently when Millie and her family, including older brother Mylz, were all together at Riley. The Modesitts live two hours south of Indianapolis, so Mitch and Candra trade off shifts staying with Millie. He comes up on the weekends, and she stays through the week. It’s not ideal, but they make it work.

At home, they have bags packed and waiting by the front door, so when the call comes that a heart is on its way for Millie, they are ready to go, no matter who is at home and who is at Riley.

“I call it like a baby bag,” Mitch said. “You know the time is coming, you just don’t know when. You’re just waiting for a phone call.”

Millie was born six weeks early at IU Health Methodist Hospital with a third-degree (complete) heart block, meaning the top and bottom chambers of her heart don’t communicate, leading to skipped beats. She was immediately transferred to Riley, where Dr. Turrentine put in a pacemaker to regulate her heartbeat.

This is the longest Millie has been hospitalized – more than four months – since she was 2 and required a new pacemaker. That admission lasted 10 weeks.

The fourth-grader makes friends with other patients easily, but too often those new friends get better and go home. That’s great for them, but it leaves Millie a little lonely at times.

“The fun part is I get to make new friends. The hard part is not going home,” Millie said while she ate lunch with her parents and brother in her hospital room.

Described as bubbly, happy and sassy by her mom, Millie is known to greet Dr. Turrentine with a breezy, “What’s up, Mark?”

Aside from the daily jokes she shares during rounds, she also engages doctors, nurses and other team members in games of UNO, which they’ve become accustomed to losing apparently.

Like Millie, her parents have made the best of their home away from home, celebrating Halloween, Thanksgiving, Christmas and New Year’s at Riley, finding joy in the little things and in the care that their community has provided them.

“We come from a small town,” Mitch said. “You don’t expect all the help they want to give. It’s humbling.”

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