Craniofacial Program | Patient Stories

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Contact the Cleft and Craniofacial Center

At Boston Children’s Hospital, we are dedicated to caring for every child, including those with the most challenging craniofacial diagnoses. Families often travel great distances for treatment by our world-renowned doctors. Time and time again, these families thank us for treating their children not just as patients but also as people.

While our team of specialists is exceptional, so too are the inspiring patients we treat. We invite you to learn more about some of the special children in our care.

Bentley's second chance part 1Bentley’s second chance: Repairing an encephalocele

Since his encephalocele was discovered on a 20-week prenatal ultrasound, Bentley was never treated as a baby that would survive. But he came out fighting, and his parents sought a second neurosurgical opinion. Boston Children’s plastic surgeon John Meara, MD, DMD and neurosurgeon Mark Proctor, MD, agreed to take the challenging case. Bentley’s protruding brain tissue was alive and functioning and needed to be eased back into his skull. To help the surgeons rehearse, Boston Children’s Simulator Program provided custom 3D-printed anatomical models, based on Bentley’s brain scans. Surgery went well, and Bentley is now headed home.

Jack's Journey managing Robin sequence

Jen Ryan's 30-week fetal MRI revealed that her unborn child had a group of birth defects known as Robin sequence. That's when this brave mom-to-be turned to Boston Children's Cleft and Craniofacial Center for help. Read 'Jack's journey managing Robin sequence’ on the Boston Children's Hospital blog

Families with Apert syndrome find similarities, not differences

Each year, Boston Children's Cleft and Craniofacial Center sees about 50 children with Apert syndrome, a rare genetic disorder in which the skull, face, hands and feet develop abnormally. Twice a month, a special Apert syndrome clinic is held, bringing together the specialists each child needs to see, with some families traveling from as far away as China. In July 2016, families stayed in Boston for the weekend to exchange information and learn about the latest research at Boston Children’s 2016 Apert Family Symposium. Read ‘Families with Apert syndrome find similarities, not differences’ on the Boston Children’s Hospital blog.

A fighting chance for Eva

Before she was born, Eva was diagnosed with an encephalocele as well as microcephaly. A critical vein made surgery on the encephalocele too dangerous, her doctors in Utah felt. However, surgeons at Boston Children’s — neurosurgeon Mark Proctor, MD, and plastic surgeon John Meara, MD, DMD — felt the vein could be safely removed along with the encephalocele. Eva’s parents decided to take the chance. Surgery was successful and Eva is now being followed by the Craniofacial Program.

How craniosynostosis turned a Costa Rican family into New England Patriots fans

Marcel’s family’s global search for the best doctors brought them here to Boston Children’s and neurosurgeon Mark Proctor, MD, renowned expert in a minimally invasive approach to treating craniosynostosis. Read the full story, on the Boston Children’s Hospital blog.

A Craniofacial Surgery Success Story: Catching up with Dominic

When Dominic Gundrum first came to Boston Children’s late in 2012, his future was very much unknown. He was born with a large, triangle-shaped gap running from his upper lip through the middle of his nose and forehead. His cleft was so large that fluid and tissue from his brain, normally encased in the skull, had seeped outwards, forming a golf ball-sized bubble underneath the skin of his forehead—a condition called an encephalocele. Despite the unknowns, a team led by John Meara, MD, DMD, MBA and Mark Proctor, MD, performed a long and complicated surgery to resect Dominic’s encephalocele and repair his skull. Read the full story, “Catching up with Dominic Gundrum,” on the Boston Children’s Hospital blog.

Our Patient’s Stories: Treating Owen’s Encephalocele

When Jennifer and Kevin Sheridan went for a routine 14-week ultrasound of their unborn son, Owen, the pictures showed a sizeable encephalocele that threatened Owen’s life. When Owen was born via C-section, the hospital told them that removing it would far too risky, because of its size and the amount of brain matter and blood vessels involved. Having read Dominic’s story (above), the family contacted doctors John Meara, MD, DMD, MBA, and Mark Proctor, MD at Boston Children’s. Even with Proctor and Meara’s long history in treating encephalpceles, Owen’s was the largest either had ever seen (11-inches, 7 lbs). After carefully reviewing Owen’s information, both agreed that while difficult, it would be reasonable to attempt to surgically remove Owen’s encephalocele and reconstruct his skull with surgery. Two weeks later, the Sheridans were in a Boston Children’s hospital room preparing themselves for what would prove to be one of the biggest day of their lives. Read “Our patients’ stories: Treating Owen’s encephalocele” on the Boston Children’s Hospital blog.

Violet’s Story: The Next Chapter

Violet, born on February 12, 2013 with a Tessier cleft 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 just a tiny part of Violet’s story. Behind the dramatic medical case is a toddler with a captivating grin, delightful belly laugh and (mostly) quiet determination. Read “Violet’s story: The next chapter,” on the Boston Children’s Hospital blog.

Make an Appointment

For an appointment, more information or to obtain a second opinion for your child, please call us at 617-355-6309 or email samantha.hall@childrens.harvard.edu.

International Patients

For families residing outside of the United States, please call Boston Children's International Health Services at 1-617-355-5209.

Boston Children’s is so much more than a hospital—it’s a community of researchers, clinicians, administrators, support staff, innovators, teachers, patients and families, all working together to make the impossible possible. ”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital
300 Longwood Avenue, Boston, MA 02115
For Patients: 617-355-6000
For Referring Providers: 844-BCH-PEDS | 844-224-7337

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