Cleft Lip and Palate Program | Patient Stories

At Boston Children’s Hospital, we are dedicated to caring for every child, including those with the most complex conditions. We provide these families with the education, treatment and ongoing resources that they need. 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.

Families with Apert syndrome find similarities, not differences

Jack's journey managing Robin sequence

Bentley’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.

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.

Answers, Treatment and Coordinated Care for Brooks

Rick and Aimee Bellew were devastated when they learned that their son, Brooks, would be born with cleft lip and soft palate. Like any parent, they launched into their own research to learn more about treatment options for their baby. Frustrated at the lack of information about long-term options for children born with this condition, they turned to the experts at Boston Children’s Hospital, who walked them through every detail of what to expect.

After three successful surgeries, the Bellews say family and friends say they can’t even see any visible signs of the repair work that was done.

Read the full story, “Life after cleft lip surgery: Finding Brooks’ smile,” on the on the Boston Children’s Hospital blog.

A Parent’s View: The Importance of Children’s Hospitals

The first time Boston Children’s Hospital saved my son’s life, he was 21 hours old.

It wasn’t a surprise—Joey had been diagnosed in utero with both a ventricular septal defect (VSD), a hole between the right and left sides of his heart, and a duodenal stenosis, where a portion of the intestine is so constricted that very little can pass through, by doctors in the Advanced Fetal Care Center. Read more about Joey's cleft palate repair here.


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International Patients

For families residing outside of the United States, please call Boston Children's International Health Services at +01-617-355-5209.