“The Bravest Girl:” A Grandpa’s Harmony Brings Comfort

The holiday season in 2021 was extra special for Jim Dobbins. At age 70, the retired biomedical engineer was about to receive a new title: grandpa.

On Dec. 3, his granddaughter Danielle Rey was born. She appeared to be a healthy baby, but not even 24 hours later her feet turned blue, and she was rushed to the NICU where she stayed for the next three months.

“Originally, she was misdiagnosed,” says Carole, Danielle’s mom. “We did genetic testing, and that’s when we learned she had a chromosomal disease.”

Danielle lives with Mowat-Wilson Syndrome, a rare disorder caused by a chromosome rearrangement resulting in intellectual delays, seizures, and different facial features. About half the people living with the syndrome also experience GI issues, or Hirschsprung disease, like Danielle.

After abdominal surgery to help her symptoms, Danielle had a colostomy bag and returned to the NICU.

“The colostomy caused a lot of pain and suffering for Danielle,” says Jim. “The bag needed to be stuck on so hard, and when it changed, which could be every few days or even a few times a day, it was painful on her baby skin.”

Jim didn’t live far from the hospital where Danielle was, and he visited almost daily. Upon seeing how upset the dressing changes made Danielle, Grandpa Jim began singing to her.

“I lean over [her bed], look her in the eye, and I sing, ‘Danielle is the bravest girl in the world.’”

To everyone’s surprise and relief, Danielle stopped crying upon seeing her grandpa and hearing his soothing voice.

“Even with so many diagnoses, Danielle still connects with grandpa,” says Carole. “It’s amazing.”

Between stays across three hospitals in St. Louis, grandpa’s special tune is the only antidote for Danielle’s fussy days.

Jim explains he used to sing to Carole when she was a toddler.

“I would sing, ‘Carole is the prettiest girl in the world,’ and then I changed it to ‘brave’ for Danielle. I know the nurses started to sing it, too, to their kids just subbing out the names or adjective.”

In 2022, Danielle came to Ranken Jordan after the colostomy ultimately failed resulting in septic shock and a severe wound.  A child life specialist took note of Jim’s singing and Danielle’s response. She notified Music Mary, who recorded Jim’s songs and made them audio files the family could share. They added new verses, describing Danielle is the “sweetest,” “smartest,” and “calmest.”

“It’s a calming mechanism,” says Carole, who shared it with Danielle’s medical daycare. “They use it there when she needs it.”

Carole says Ranken Jordan “literally” served as the bridge to help them get home. After months of recovery, they are all back home. Grandpa, too.

“He moved in with us in January this year,” says Carole. “His house was getting to be a lot to take care of, and I’m a single mom. Dad really stepped up. We help each other.”

Every morning, grandpa organizes all Danielle’s equipment and supplies for Carole. Then, Carole gives Danielle all her medications and checks her g-button and Broviac dressing. Mom also completes all the daily therapies with Danielle, such as sitting and stretching.

Carole is a registered nurse, and she manages all of Danielle’s appointments and medical management. Her dad manages all the supplies and reordering.

“He was an engineer, and he troubleshoots her wheelchair, fixes equipment, orders all the materials we need,” says Carole. “He keeps the house in order, and he consoles Danielle.”

When Carole picks up Danielle from medical daycare, grandpa sits in the back and plays with her. “It’s a special bond,” she says. “I hope to help him even half as much as he helps me.”