A Virginia girl will be able to celebrate the holidays this year with a bright smile on her face thanks to a life-changing surgery that she is believed to be the first pediatric patient to undergo.
Nicole Serna-Gonzalez, 11, was born with a condition called unilateral congenital facial paralysis, which left her unable to smile, blink or show emotion on the right side of her face. The condition happens in around 2 out of 1,000 births, according to the Children's Hospital of Philadelphia.
Nicole's parents, Sergio Serna and Carolina Gonzalez, said doctors initially told them they believed the condition would either improve or go away completely.
When it didn't as Nicole got older, she underwent further testing that showed part of a nerve had not developed while she was in utero, leading to her face paralysis, according to Gonzalez.
She said that when she and her husband learned Nicole's facial paralysis would not go away on its own, they sought out treatments in hopes of making her life easier. She said they also worked to make sure Nicole knew she was beautiful the way she was born.
"I didn't want to fix her because I think something is wrong. I love her smile before. It's who she was," Gonzalez told ABC News. "But I wanted for her to live a life where she doesn't have to tell her story on a daily basis."
Nicole's condition is so rare that her parents said they had difficulty finding information about it online, particularly finding cases where the paralysis was successfully fixed.
In her research, Gonzalez said she discovered Dr. Patrick Byrne, who is now chair of the Head and Neck Institute at Cleveland Clinic in Ohio.
The family traveled to meet with Byrne, where they said they discovered he could treat Nicole's facial paralysis with a first-of-its-kind, 12-hour surgery.
Serna described learning about the surgery and then deciding to move forward with it for Nicole as a "big leap of faith."
"It was scary and we were worried but also we didn’t’ want to let pass an opportunity for her," he said. "For us as parents, it was really important to do the most that we could and not regret it and not deny her the opportunity, but it was a big leap of faith."
Serna said he and his wife, also the parents of a 7-year-old boy, were made aware that the process would be long, with Nicole not seeing full results for possibly as long as two to three years.
Byrne said he watched as Nicole and her family decided to move forward with the surgery, knowing how important it is to have the ability to smile.
"When people lose their ability to express their emotions on their face, it really has profound effects," Byrne told ABC News. "It affects not only how you feel about yourself, but it has dramatic effects of how people respond to you. It’s a really difficult way to go through life because you don’t’ get the responses from people that most of us do in everyday situations."
On June 8, 2021, Byrne led a team of five surgeons, an anesthesiologist and multiple nurses in performing a facial reanimation operation on Nicole, which involved removing a sensory nerve from her leg and implanting it in her face.
"We identify one facial nerve, a nerve in her good side, that drives her smile and her blink, and we sacrifice it and connect the nerve graft from her leg to that nerve, and then tunnel it all the way across from one side of the face to the other," said Byrne. "Once that's done, then we open up the paralyzed side of her face and we have to dissect out each one of the facial nerve branches."
In order to give Nicole the most natural-looking smile possible, Byrne and his fellow surgeons performed a first-of-its-kind trivector gracilis free tissue transfer. They removed the gracilis muscle from Nicole's leg and divided into three slips and then implanted the muscles under and around her eyes.
"We have to implant these muscles in a way that they'll not only work but hopefully look beautiful and look natural, once they start working," said Byrne. "Now when Nikki smiles spontaneously, when she smiles with her mouth, she's also smiling with her eyes, like we do naturally."
Byrne said that as Nicole continues to get further and further away from her surgery, she'll end up with he calls a "nicely symmetric face."
"She's already beautiful and she's special," he said. "But we're looking forward to even more improvement as she goes through her further development."
More than one year after undergoing surgery, Nicole describes her own smile as "magical."
"I feel happy with my new smile and I think it’s really magical," she told ABC News. "The side of my face, when I smile, it moves, and I'm really happy about that. I have a full smile now."
The fifth-grader, who said she loves history and loves to craft, said she feels "happy" that she can share her story in hopes that, "Other people who have face paralysis can get help."
Serna and Gonzalez said that while the months before and after the surgery were difficult, they are happy to see Nicole now doing so well.
They said they also want to share their family's story to give hope to other families who, like they once were, may be searching for ways to help their child.
"I want more parents to be able to look up and find it and normalize the whole thing, including the surgery process," said Gonzalez. "As parents, whatever the situation is for the child, I think it’s so important to always build your child, always make them feel secure, make them feel special, because they are. That’s how we raised Nicole."