There’s no place like home for this heart baby

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

“There’s no place like home. There’s no place like home.”

After five months in the CVICU at Riley Hospital for Children, Rose Opal Ann Byers followed the ‘yellow brick road” home – not to Kansas but to Greencastle, Indiana, with her parents, Spencer and Madison, at her side.

Dressed as a tiny Dorothy from “The Wizard of Oz” – complete with the bows in her hair, to the gingham dress, to the ruby red slippers – Rose departed Riley last week, not in the clutch of a tornado, but in the arms of her parents, who’ve been by her side night and day since she was born with a serious heart defect in June.

With the release of “Wicked: For Good” over the weekend, the nurses on the CVICU at Riley came up with the Dorothy theme for Rose’s big day. And Madison leaned in by decorating Rose’s wagon in yellow brick road paper. Even Dorothy’s dog in the film got in on the fun. A nurse found a stuffed version of Toto the terrier for the ride home.

“We’re so excited to be going home,” Madison said, adding that the family planned to protect Rose’s fragile immune system by hosting a very small Thanksgiving at home with Rose’s two older brothers.

They always hoped to be home in time for Thanksgiving but kept their expectations in check.

“We didn’t want to be apart for the holidays.”

Rose was diagnosed with a rare heart defect in utero called truncus arteriosus, where a single blood vessel leaves the heart instead of two. She underwent open-heart surgery at just 11 days old, with Dr. Mark Turrentine repairing the problem.

Sending their baby girl into the operating room so soon after birth required a deep level of trust, and the couple struggled, understandably.

“It felt like we were in fight or flight mode those first two weeks,” Spencer said.

Rose spent 165 days in the hospital, with her parents taking turns staying with her round-the-clock.

The nurses were lifesavers, Madison said, lending emotional support throughout their time on the CVICU.

“They’ve been amazing. She’s leaving here with a lot of aunts.”

Nurse Andi Vordermann said Rose is easy to love, especially for how long she spent inpatient.

“I’m just really proud of her,” Vordermann said. “And both her parents did really great.”

Rose is going home on a ventilator to assist with her breathing, as well as a G-tube, but she is in good hands, her mom said.

“We go through so much training in the hospital. And the care has been great.”

“Nothing but good things to say,” her husband added.

While they said goodbye to the CVICU last week, it’s not goodbye to Riley. Rose will return every four weeks for follow-up care with cardiologist Dr. Sabena Hussain and the heart team.

Time will tell if she’ll need additional surgeries, but for now, the sweet-tempered girl with big brown eyes and rosy cheeks is clicking her heels three times because there really is no place like home.

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