Violet’s story: The next chapter

V_CJust shy of her second birthday, Violet is ready to move on to the next chapter of her life. Her face has inspired hundreds of thousands of Facebook likes and shares. The New York Times feature about her has captivated the world. The video series about her medical journey has gone viral.

But these images and words tell a tiny part of Violet’s story. Behind the dramatic medical case is a toddler with an impish grin, delightful belly laugh and (mostly) quiet determination.

Before Violet was born, doctors told her parents, Alicia and Matt, that their twin daughters had a rare craniofacial defect called an encephalocele. Determined to do everything they could for their unborn children, the Oregon couple found an encephalocele support group. The group led them to Mary Gundrum, whose son Dominic was born with a defect like Violet’s.

A few months after he was born in 2012, Dominic’s family brought him to Boston Children’s Hospital, where a team of surgeons, led by John Meara, MD, DMD, plastic surgeon-in-chief, repaired his encephalocele and Tessier cleft—a gap in the bones of his face.

Learning about Dominic’s successful surgery gave Alicia and Matt hope, and they clung to it. They contacted Meara, and he reassured them that he could help their daughter. He became a fixture in the family’s life, touching base regularly to review Violet’s ultrasound and MRI images and determine the best path forward for Violet.

“It felt like he saw Violet the way we saw Violet. Her well-being was as important to him as it was to us,” says Alicia.

Violet was born on February 12, 2013, with a Tessier cleft.

In October 2014, Alicia, Matt and Violet traveled from their home in Oregon to Boston Children’s, where Meara, Mark Proctor, MD, vice-chair of neurosurgery, and Peter Weinstock, MD, PhD, director of SIMPeds, had planned Violet’s surgery using 3D-printed models of her skull.

The doctors successfully closed the gap in Violet’s facial bones, reshaping her face and her life. “This surgery could change the direction of her life,” says Alicia.

Today, Violet’s life is like that of many toddlers. “Life is like a blender without a lid,” says Alicia. Violet and her twin sister Cora are inseparable co-conspirators. V_C2

The girls love to play with the family dog Jake, trying to ride him or use him as a step stool. Another favorite pastime is racing in their identical pink cars. Constantly on the go, the twins don’t talk much and instead communicate by sign language.

Their favorite words are candy, more and a new one—beautiful.

Meara keeps tab on his beautiful patient, connecting with the family by phone and Skype every few days, advising Alicia on how to care for the surgical wound and helping to plan an upcoming operation in Oregon to repair Violet’s eye. The surgeon doesn’t expect to see Violet in person until just before kindergarten when he completes some additional cosmetic repairs to Violet’s face.

“Violet and her family have shown tremendous courage throughout the entire process. It’s inspiring to see how well she has done and what a joy she is for her family. Her future is very bright, and we look forward to watching her grow,” says Meara.

Watch Violet’s entire journey.