ASHBURN, Ga. (WALB)— Emmie Lou Ward loves swimming, gymnastics and riding her Jeep and John Deere ‘Gator’ outside. She draws, paints and keeps up with her friends. She is, by almost every measure, a typical 6-year-old.

But Emmie was born with half a working heart.

The Ashburn native was diagnosed prenatally with Hypoplastic Left Heart Syndrome (HLHS). Her doctors call it a rare, uniformly fatal condition without immediate treatment. Six years later, they say she is proof that early detection and specialized care can rewrite what once seemed like an impossible story.

‘Something’s Severely Wrong’

Kimberly Ward, Emmie’s mom, was midway through a routine pregnancy when a standard anatomy scan flagged a concern.

“They said there may be something wrong with her heart,” Ward said. “We went back and they said, ‘Yeah, something’s just not quite what we want to see.’”

Doctors referred Ward to a maternal-fetal medicine specialist, who confirmed the worst. The family said they left the appointment overwhelmed and without answers.

“We were really devastated,” Ward said. “We had never heard of it before. We didn’t know anyone who had it.”

A referral to Children’s Healthcare of Atlanta (Children’s) brought the official diagnosis of HLHS, a condition in which the left side of the heart is severely underdeveloped. Doctors say without surgical intervention, it is uniformly fatal, with most untreated newborns surviving only days.

But the prenatal diagnosis changed everything.

“We count that as a blessing because we knew about it ahead of time,” Ward said. “They helped us prepare, helped us know what to expect. Had we not known it ahead of time, we would have been thrown into all of that at delivery, which I feel like would have been a lot harder.”

The Surgeries

Dr. Shashidharan, also known as Dr. Subi, is the Associate Chief of Cardiac Surgery and Surgical Director for the Single Ventricle Program at Children’s. Emmie is her patient.

Dr. Subi describes HLHS as rare and demanding for families, hospitals and the healthcare system alike.

“Without surgical treatment, it is uniformly fatal,” Dr. Subi said. “Majority of the kids without immediate attention would pass away within a few days.”

Treatment is not a cure. It is a series of what doctors call ‘staged palliative surgeries’ designed to reroute blood flow so the heart’s right side does the work of both sides. The first and most critical procedure is called the Norwood operation, Dr. Subi said.

“In 1979, when they first started doing surgeries, majority of the patients died,” Dr. Subi explained. “Now we are able to do it with under 10% mortality for the first stage.”

Dr. Subi said at Children’s, the number is even lower with the center’s Norwood mortality rate at approximately 6–7% in recent years. This is compared to a national average of roughly 15%, according to the National Institute of Health (NIH).

Emmy underwent her last surgery at age 4. She will need lifelong cardiac monitoring and faces potential long-term complications, including heart failure and a condition called Fontan failure. But right now, Dr. Subi said she is thriving and defying the odds.

“She’s living her best life,” Dr. Subi said. “She’s started gymnastics, running around as a first grader, having a really good life. The limitations for her are very limited at this point.”

‘Half a Heart’

Emmie knows she is different. She has a scar on her chest. She goes to more appointments than other kids.

Her family explains it simply: Emmie has half a heart.

“She can do whatever she wants to do,” her mother said. “Her cardiologist told us from day one, ‘Let her limit herself.’”

After her last surgery at 4, Emmie says she can now run and keep up with her friends.

The hardest part now, Ward said, is explaining the extra appointments and occasional breaks, not the heart condition itself.

“If you try to understand and worry about all the things that could happen, that can overwhelm you,” Ward explained. “But if you can take it day by day, then you look back six years later and you’re just very thankful. You don’t know how you got here, but you’re glad you got here.”

A Message for Families

The Ward family has a simple message for other parents, especially those who are pregnant.

“Just go to your OB appointments,” Kimberly Ward said. “Catching any severe thing before they’re born, I feel like makes a huge difference.”

Dr. Subi echoed the call for prenatal care.

“Good prenatal care, follow your medical advice, and a positive attitude,” she said. “Families who view it as: this was provided to them because they are the best people to take care of that child, I think they do better.”

Emmy turns 7 on Aug. 14 and continues follow-up care through a Children’s clinic in Albany.

The family’s motto that carries them through it all: “Half the heart, full of life and love.”

For more information on hypoplastic left heart syndrome, visit: https://www.choa.org/medical-services/heart-center/hypoplastic-left-heart-syndrome

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