Violet Pietrok was born with a Tessier Cleft, a rare defect that left a fissure in her skull. Surgeons at Boston Children’s Hospital, aided by 3-D prints of her skull, hope to repair the damage.
BOSTON — The surgeon held a translucent white plastic eye socket in each hand. Gently moving them away from each other, Dr. John Meara showed the distance between Violet Pietrok’s eyes at birth. He slid the sockets closer to demonstrate their positions 19 months later, after he had operated on her.
Violet, now nearly 2, was born with a rare defect called a Tessier facial cleft. Her dark brown eyes were set so far apart, her mother says, that her vision was more like a bird of prey’s than a person’s. A large growth bloomed over her left eye. She had no cartilage in her nose. The bones that normally join to form the fetal face had not fused properly.
Her parents, Alicia Taylor and Matt Pietrok, sought out Dr. Meara at Boston Children’s Hospital, thousands of miles from their home in Oregon, because the plastic surgeon had performed four similar operations in the previous three years.
Before he operated on Violet, Dr. Meara wanted a more precise understanding of her bone structure than he could get from an image on a screen. So he asked his colleague Dr. Peter Weinstock to print him a three-dimensional model of Violet’s skull, based on magnetic resonance imaging pictures.
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On the day of the operation, when the surgeon came out to speak with the family, “he was smiles from ear to ear,” Ms. Taylor said. “He said it went perfect.” Knowing every move he’d make, she added, was hugely different “from opening Violet and saying, ‘How do we fix this?’ ”
Still, Violet’s recovery has been challenging. The skin on her scalp was not strong enough to hold the stitches. Her whole scar threatened to unzip, from the top of her head to the front of her face, and still has not healed three months later. A second operation, to form functional eyelids, was only a partial fix. More surgery will be needed to bring her eyes still closer together and to add nasal cartilage.
It will be a long time before Violet’s face no longer stops people on the street — some kind and curious, some ready with insults for a little girl who looks different.
But Violet seems not to notice. She plays peekaboo with strangers. She pushes a pink walking toy — sometimes by the handle, sometimes in less conventional ways — regaining the steadiness she had lost as her eyesight shifted. She throws her head back and giggles uncontrollably when her mother tickles her.
“There’s just something about her that’s amazing, that shines,” Ms. Taylor said.
