Ole Miss Student Describes Life with Goldenhar Syndrome

By Kenneth Niemeyer

Journalism Student

Goldenhar syndrome is a rare condition that affects around one in every 5,000 children. For most, the condition is not life threatening, but for University of Mississippi senior Lilly Herring, living with the disease has been an uphill battle. 

“My life expectancy was, they gave me to like 7 years old if I was lucky,” Herring said. 

When Herring was born, her doctors observed several noticeable birth defects, and around two weeks later, she received a diagnosis of Goldenhar syndrome. 

Symptoms vary widely, but children born with Goldenhar syndrome can exhibit signs of developmental issues of their face, teeth, eyes, heart, spine, kidneys and lungs, among other things. Approximately 15 percent of people diagnosed with the disease have an intellectual disability, according to the Centers for Disease Control. 

The disease in congenital, meaning it’s present at birth, but only about 1 to 2 percent of children with the disease inherit it from a parent, according to Healthline.com.

In Herring’s case, she was born with three holes in her heart, better known as septal defects caused when perforations form in the walls that separate the upper two chambers of the heart. She was also born with slightly asymmetrical facial features, and she’s partially deaf, only able to hear out of her right ear.

According to Herring, her doctors did not originally plan to perform surgery on her heart because children born with septal defects normally heal over time as they grow and the holes shrink. 

“I would have to go to the heart doctor like every three months and do all the tests to make sure that everything was okay, and they were not getting bigger. Two of the three holes in my heart completely closed off, and those were fine, but one of them kept getting bigger,” Herring said.

The growing hole in her heart caused the blood to circulate inside her artery and not flow correctly to the rest of her body. Her doctor recommended a heart catheterization to try and close it when she was in the fifth grade.

During a heart catheterization, a long tube is inserted into the patient’s artery — usually through their groin, neck or arm — and heat is used to correct heart rhythm problems, according to the Mayo Clinic. 

“They were going to try to patch it up, and if that didn’t work, they were going to go to open heart surgery,” Herring said. “But, when they got in there, everything was closed up.”

When she came out of surgery, her parents were shocked by the incredible, yet confusing news that her heart had healed itself in the span of one day. 

“(The doctor) thought we were going to sue him because he brought both the charts of the day before when they had run the tests to make sure that surgery was the only option,” Herring said. “We were like, it’s fine, we’re not going to sue, we just want to go home.”

After her surgery, she was regarded as a miracle child in her community of Morton. Coming from a very religious family, her parents had sought the help of their church to heal their daughter.

“They had been praying for a long time, and I had gone to church and had people physically put their hands on me just praying Jesus would heal me,” Herring said. “When everything happened, my parents took that as their prayers have been answered. They had prayed for so long that I would be healed, and I finally was.”

Herring, who is a communication sciences and disorders major, plans to attend he University of Pittsburg next fall to pursue a master’s degree and eventually a doctoral degree in her field. Though she did not choose her major based on her hearing impairment, she hopes her experience will help her relate to her future clients. 

“Once I get my degree and I’m sitting on the other side of them — and they’re going through something and they’re scared and they can’t hear and they don’t understand — I’m kind of more on their level,” Herring said. “It’s like, I do understand. I’m half deaf too, but it’s not the end of the world, and we can fix it.”