A rare diagnosis: Zoey’s new smile

Zoey, before her surgery for a frontal encephalocele

Zoey Alford’s favorite TV show is Vampirina, the animated tale of a little blue-skinned vampire trying to fit in with the normal kids at her new school in Pennsylvania. It’s a fitting choice for Zoey, a tutu-aficionado from Mississippi, who knows a thing or two about what it’s like to be different.

Zoey was born with a frontal encephalocele, a rare birth defect in which the tissue covering the brain, and parts of the brain itself, protrudes through openings in the skull. In Zoey’s case, the bones of her forehead and the bridge of her nose never fully formed, leaving a hole in her face where her nose should have been. She was also born with a midline cleft lip.

Initially, doctors told Zoey’s parents, Tishana and Quantrel, that she wouldn’t live longer than 24 hours.

But the doctors were wrong. Zoey was born in April, 2015 and quickly grew into a “little diva.” She learned not only to walk and talk, but also to sing and dance. She could even play outside, although it meant wearing a custom-made mask to protect her vulnerable brain. Despite Zoey’s craniofacial anomalies, she was an otherwise healthy little girl.

Zoey, who had surgery for a frontal encephalocele, with her grandparents
Zoey posing with her grandparents

Still, Tishana and Quantrel knew she was going to need surgery and began to explore options for her care. Their research brought the family to Boston Children’s Cleft and Craniofacial Center, led by Dr. John Meara, plastic surgeon-in-chief, and Dr. Mark Proctor, neurosurgeon-in-chief.

In 2018, Zoey underwent the 10 hour surgery that would change her life. Dr. Meara reconstructed Zoey’s skull, giving her a forehead and a nose bridge, as well as repairing her cleft lip and palate. It was a huge success — for the first time in her life, Zoey Alford had a nose.

Now a bubbly 4-year-old, Zoey is thriving. She will return to Boston in 2020 for a follow-up surgery, but for now she is a little ball of energy, devoted to her family, helping others, and tutus.

‘Miss Independent’

Zoey is a big girl now, who loves to dress herself because she can decide which tutu to wear.

But Zoey is always racing around, whether she’s in her tutu or not. Zoey retired the plastic mask she once needed to wear to while playing, happily passing it down to her Mickey Mouse doll. “It’s no longer Zoey’s mask,” Tishana chuckles.

Zoey, who had surgery for a frontal encephalocele, plays with a pink balloon after her surgery
Zoey, sporting her pink tutu.

Zoey will graduate from daycare to preschool in August. Although Tishana is nervous about the transition, she is confident in Zoey’s ability to succeed. “According to her previous daycare, she’s already on the learning curve of doing well.”

A new Zoey, post-surgery

Tishana says Zoey isn’t yet old enough to understand her surgery, which she thinks is a good thing. But even if Zoey isn’t aware of her complex medical history, she does know she looks different. Tishana says that “she’ll look in the mirror and point at her nose, and then she’ll point at my nose, so I think she recognizes that there are certain small features that are different about her.”

Zoey, who had surgery for a frontal encephalocele, with her mom and dad
Tishana, Quantrel, and Zoey

Tishana is certain that the surgery has also made Zoey more compassionate towards people. “After surgery, if someone’s crying she’s like ‘oh, it’s okay!’ She’ll tell them ‘don’t cry.’”

Faith and family first

Since Zoey’s birth, she has been surrounded by an adoring family. Her family is very “hands-on,” from her grandmother babysitting her regularly, to her entire family flying out to be in the hospital during Zoey’s surgery in 2018. Tishana has no doubt that they’ll all come next year too.

Zoey's family, with Dr. Meara and Dr. Proctor, who performed her surgery for a frontal encephalocele
Dr. Meara (center, in scrubs) and Dr. Proctor pose with Zoey’s family after her surgery

Perhaps the most important aspect of the Alford’s family life is the intensity of their faith. Even when their faith was tested by Zoey’s health challenges, they remained hopeful. “Faith is what we depend on. When it comes to faith, it was all we had to lean on. When everybody’s telling you no, she won’t make it, or you won’t be able to have her, or you shouldn’t have her, I had nothing but faith to depend on,” says Tishana.

Looking forward

Even post-surgery, Zoey’s appearance still attracts attention. Tishana says they can’t go into a public place without people looking at them or asking questions about Zoey’s condition. Over the years, people have made many comments that Tishana has learned to just “not hear.”

Zoey, who had surgery for a frontal encephalocele, hangs out smiling on the beach.

But Tishana doesn’t let the attention faze her. She likes to take the time to listen to people who wish to share their stories with her. “You know, I’ve actually grown used to it,” Tishana says. “You think that you’re the only one who may be going through things in life but then you meet so many people and you hear their stories and you realize that’s not the case.”

She also loves to hear the success stories of other people. “Those are the kinds of things that make me feel very grateful.”

Zoey is unbothered by the attention. She’s happy and outgoing, always looking to make a friend. “Zoey’s not a stranger to anyone now. She’ll literally walk up to anyone and say ‘Hey, how are you?’”

July is Cleft and Craniofacial Awareness Month. Learn more about the Craniofacial Program.

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