At first glance, Layla Hohimer seems healthy.
The 16-month-old girl smiles coyly in her father’s arms — she’s quick to hide her face from a stranger. She loves to laugh and play with her brothers and sisters as best she can.
“They’re her best friends,” her mother, LeeAnne Hohimer, says.
She seems healthy, but she’s not.
Layla, who lives with her parents in Livermore, was essentially born with half a heart that has missing and malfunctioning valves and major arteries that are in the wrong places connected by a string of tiny blood vessels that should have formed as major pathways to her lungs. It’s called complex congenital heart disease, and she’s the only living person on earth with her set of heart unique conditions.
She’s beaten so many odds over the last year. When she was born too weak for surgery, doctors never expected her to leave the hospital. After a second heart catheterization, the family was told their daughter had only a 40 percent chance to survive one to five years.
She wasn’t a candidate for surgery. Now, she just might be.
Layla returned home last month from a risky unifocalization surgery at Lucile Packard Children’s Hospital at Standford University in California. Children’s Heart Center Director Frank Hanley is a pioneer of the surgery, which repairs that string of interconnected blood vessels in a single, 18-hour operation. It was risky, but the results could make Layla a candidate for future surgeries.
She survived the surgery in October, and what was expected to be a six-month recovery turned out to be just 12 days.
“They told us in the hospital that she’s a miracle,” her mother said. “It’s such an extensive surgery. It’s so complex. They couldn’t explain why she recovered so quickly.”
The McLean County community has embraced Layla’s story. In July, family members hosted a picnic at Myer Creek Park in Calhoun to raise money for the surgery. The story of her family’s perseverance has touched so many lives.
LeeAnne and Garrett Hohimer said staying positive has seemingly been the only thing to do in the face of so much adversity.
“We were told she would never walk, never be off oxygen, not event be here, but she is here,” LeeAnne Hohimer said. “So we don’t put limits on her. We have times where we get down. We have times where we feel defeated, but then we look at her. How could we expect her to stay strong if we can’t? She’s gone through all of this and she’s not even 2 years old. She handles it with so much grace.”
A single scar on Layla’s chest is seemingly the only evidence of her condition today. She is scheduled for a heart catheter in the spring that will allow her doctors in Louisville to know whether they can proceed with future surgeries. Her parents say they are confident that she is a candidate.
Her medical outlook, for now, is still just a few years — a decade maybe — but she and her parents fight on.
“Against it all,” Garrett Hohimer said, “she keeps on fighting.”