New year, new face, same spirit: Zoey’s journey with encephalocele and cleft lip care

A young girl smiles at the camera with her arms outstretched.
Zoey travels from Mississippi with her family to the Cleft and Craniofacial Center for care for encephalocele, a rare congenital condition where the tissue covering the brain protrudes through openings in the skull. (Image: Michael Goderre, Boston Children's Hospital)

Seven-year-old Zoey loves school, her friends, and everything unicorn. She’s outgoing and happy and has an eye for looking her best.

“She loves getting her nails done,” says her mother, Shana. “She’s straight diva.” Talking with Zoey and her mom, you can’t help but be inspired by their positive spirit, care toward others, and general sense of optimism. Especially considering the long road they’ve traveled to get Zoey the care she needed for an encephalocele, a rare congenital condition in which a baby’s skull doesn’t close completely and part of the brain protrudes through the skull. For Zoey, this meant that her forehead and the bridge of her nose didn’t form fully, leaving a hole where her nose would have been and a wide distance between her eyes. She was also born with a cleft lip.

Finding a better way

Zoey and her family first came to the Cleft and Craniofacial Center at Boston Children’s Hospital about five years ago, after doctors near their home in Mississippi had told Shana that Zoey would need more than a dozen surgeries to reconstruct her facial features. Convinced there were better options, Shana and her mother started searching and eventually found the Boston Children’s Second Opinion Program. The team matched Zoey with Dr. John Meara and Dr. Mark Proctor.

Organizing Zoey’s scans, imagery, and medical records to get her considered for treatment was challenging; Shana praises Boston Children’s for helping her through the process.

“The team was amazing,” she says. “Any questions we had, they answered. If I asked a question 10 times, they answered it kindly 10 times.”

Doing what’s best for Zoey

Zoey’s first surgery worked to reconstruct her skull, smooth out her forehead, and create a bridge to her nose; Dr. Meara also repaired her cleft lip. They advised Shana and her family that to limit how much surgery Zoey would undergo at one time, she would need one to two additional procedures to complete her forehead reconstruction and to narrow the space between her eyes. It was tough to hear, but Shana was relieved that Zoey wouldn’t have to endure as many surgeries as she had initially thought.

Three-dimensional recreations of a young girl's skull that include incomplete closure of skull bones due to an encephalocele.
The Boston Children’s team created a 3D model of Zoey’s skull to practice their planned techniques to minimize complications during surgery. (Image: Boston Children’s Hospital)

To help minimize complications and additional surgeries for Zoey, Dr. Meara and Dr. Proctor created a 3D model of her skull, which they used to practice specific surgical techniques before her actual surgery. They reviewed each step with Zoey and her family and discussed what to expect.

“Every move the team made was with Zoey’s comfort and well-being in mind,” Shana says. “It was about doing what was best for Zoey.”

When Zoey returned home to Mississippi a few weeks after her surgery, she went right back to being her friendly, charismatic self.

Late last year, Dr. Proctor and Dr. Meara performed a second reconstructive procedure to move Zoey’s eyes closer together, a procedure called a box osteotomy or orbital translocation. They were also able to further smooth out her forehead.

“I was nervous and excited at the same time,” Shana said when they arrived in Boston in November. “I know she’s in great hands because we have had nothing but a good experience with Boston Children’s. Boston is where we need to be. We’ve had the best team.”

A new chapter again

A female teacher side-hugging a young girl while they smile at the camera.
Zoey pictured with her k5 teacher.

Zoey was back in Mississippi right before Thanksgiving and received an enthusiastic welcome home from her family, friends, and classmates. Her teachers had missed her too, so much so that her K5 instructor made a trip to Boston Children’s’ to visit her as she recovered.

“She’s doing great,” Shana says of Zoey today. “She is definitely feeling pretty. She takes what feels like 100 pictures of herself a day.”

Learn more about the Craniofacial Program at Boston Children’s Hospital.

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