Just 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.
Before she had children, Marcie was terrified by vaccines, including the measles, mumps and rubella (MMR) vaccine. At the time, she worked in early intervention, coordinating services for parents of special-needs preschoolers. “Many of them believed their kids got sick or showed signs of a developmental delay after being vaccinated,” she recalls. “It made perfect sense, and I had no reason to doubt their beliefs.”
Her fears solidified after reading anti-vaccine books, and she vowed to avoid vaccinating her own children. After her first son was born, however, Marcie and her husband agreed to compromise on his vaccines. They looked for a pediatrician who understood her fears and would help them devise a modified approach to vaccination, including a staggered MMR vaccine.
The American Academy of Pediatrics (AAP), the Centers for Disease Control and Prevention and the American Academy of Family Physicians all recommend children receive the MMR vaccine at age 12-15 months, and again at 4-6 years.
The MMR vaccine is typically given as a single shot. But Marcie, her husband and her pediatrician agreed to separate the MMR vaccine into three components and immunize the couple’s two sons against measles first, then mumps, then rubella. (This separated version of the MMR vaccine is no longer commercially available in the United States.)
Fast forward to adolescence. Marcie’s older son was diagnosed with juvenile rheumatoid arthritis, which meant he could no longer get a live vaccine. (A live vaccine contains a weakened virus that causes a harmless infection in the vaccinated person with very few, if any, symptoms. The person’s immune system fights the infection caused by these weakened viruses, and immunity develops which lasts throughout that person’s life.)
“If we hadn’t vaccinated our sons, we would be completely dependent on herd immunity. I’m so glad we vaccinated our boys,” she says.
Step into the operating room with Violet’s team of surgeons and see cutting edge medicine paired with a personal touch. The 3D models of Violet’s skull are essential to helping doctors restore her precious smile. Join us as Violet’s journey continues.
Boston Children’s Hospital strives to create a comfortable, supportive environment for all of its patients. Still, most can’t wait to leave the sterile hospital halls and return to the comfort of their own homes. Anna, a 20-year-old college student from N.H., has other thoughts.
“I can’t wait to come back to Boston Children’s.”