The Ledger

By Becky Holland

COCHRAN — Six-year-old Heidi Helm has a smile that lights up a room and bright blue eyes full of curiosity. She loves Barbies, keeps her family laughing with the unexpected things she says and dreams of becoming a teacher one day.

Looking at her today, it’s hard to imagine that before she was even born, doctors weren’t sure she would survive.

Today marks three years since Heidi underwent the third stage of a series of life-saving heart surgeries—an anniversary her family celebrates not only as a medical milestone, but as a reminder of just how far she has come.

“She’s wild and hilarious,” her mother, Bailey Helm, said with a smile. “I’m glad she’s here.”

Those few words carry the weight of a journey that began during what was supposed to be a routine pregnancy.

Bailey, 32, and her husband, Dylan, 34, have built what they describe as a typical family life. Bailey is a stay-at-home mom while Dylan works at Atrium Health in Macon. Their 11-year-old son, Chandler, plays travel baseball, and Dylan spends much of his free time coaching his team.

The Helms enjoy a busy family life centered around school, baseball and simply being together.

Their journey, however, began long before Heidi was born.

During Bailey’s 20-week anatomy scan, doctors noticed something wasn’t right with her unborn daughter’s heart. Bailey was referred to specialists before eventually arriving at Children’s Healthcare of Atlanta, where doctors diagnosed Heidi with heterotaxy syndrome, a rare congenital condition that affected the development of her heart.

Heidi’s diagnosis included a rare and complex combination of heart defects, including double outlet right ventricle, ventricular inversion, pulmonary atresia, ventricular septal defect and single-ventricle physiology.

Then came words no expectant parent is ever prepared to hear.

Doctors explained that Heidi faced two possible paths: she might not survive, or she might have the opportunity to thrive through a carefully planned series of three staged surgeries.

“There were so many unknowns,” Bailey recalled. “So many ‘what ifs.’”

Those early days unfolded during the height of the COVID-19 pandemic, making an already frightening journey feel even more isolating.

“It was a dark time,” Bailey said. “I was nervous. I was scared.”

Just six days after she was born, Heidi underwent her first surgery, receiving a Blalock-Taussig (BT) shunt to improve blood flow to her lungs.

At four months old, she underwent a bidirectional Glenn procedure.

Then, at age 3, surgeons performed the Fontan procedure, completing the third stage of her surgical plan.

Today, three years later, the tiny baby once surrounded by tubes, monitors and uncertainty has become an energetic little girl who rarely slows down.

Before completing her staged surgeries, Heidi’s oxygen saturation levels often remained in the 70% range. Today, they typically stay in the low 80s. Bailey said years of living with lower oxygen levels presented developmental challenges, and the family has chosen to give Heidi an additional year in kindergarten to provide the strongest possible foundation for future learning.

Living with complex congenital heart disease still requires daily care. Heidi takes blood thinners and tends to overheat more quickly than many children. She will continue receiving specialized cardiac care throughout her life, but, barring complications such as heart failure or the need for a transplant, doctors do not anticipate additional heart surgeries.

Bailey said Heidi’s medical team has also discussed possible long-term liver complications associated with the Fontan circulation, making lifelong follow-up an important part of her care.

Despite everything she has endured, Heidi doesn’t see herself as different.

“Heidi knows that Jesus is in her heart,” Bailey said. “He made it special, and she’s a special kid.”

Today, Heidi is simply busy being six years old.

She loves Barbies. She makes people laugh with the things she says. She may be a little shy when meeting someone for the first time, but it doesn’t take long for her bright personality to take over.

“You would never know she had a complex heart condition,” Bailey said. “ No issues.”

There are still quiet reminders of the journey.

Whenever the family pulls into a parking garage, Heidi assumes they’re going to a hospital—a memory shaped by spending so much of her earliest life surrounded by doctors and nurses.

Looking back, Bailey hopes sharing Heidi’s story reminds expectant parents that congenital heart defects can affect any family.

“Don’t think it couldn’t happen to you,” she said. “Don’t get blindsided like I did.”

She also hopes people will see children like Heidi for who they are—not their diagnosis.

“Never think less of a child with any kind of defect.

Those who know Heidi best say one word simply doesn’t exist in her vocabulary.

Can’t.

Three years after the surgery that marked another milestone in her journey, Heidi’s story is no longer defined by hospital rooms or diagnoses.

It’s defined by a bright smile.

By sparkling blue eyes.

By laughter.

By faith.

By determination.

By a little girl who dreams of becoming a teacher.

And by the countless ordinary moments her family once only hoped and prayed they would have.

Photos from Bailey Helm.