Specialty Craniofacial Care at Shriners Children's Boston

Belky recalls with clarity the day she and her husband, Ivan, learned that their daughter, Avani, would be born with an isolated left cleft lip.

It was on St. Patrick’s Day, and the couple was looking forward to celebrating the holiday after their scheduled ultrasound, performed as part of a routine prenatal appointment. Belky recalled being “truly excited” that day seven years ago.

Avani’s early diagnosis during the ultrasound gave Belky and Ivan the opportunity to plan for her medical care as they anticipated her arrival. As a medical professional, Belky was already familiar with Shriners Children’s Boston. She and Ivan decided they wanted to learn more about the Shriners Children’s Boston Cleft and Craniofacial Center, a collaborative program with MassGeneral Hospital for Children. “I knew that Shriners Children’s offered specialty pediatric care, but never imagined experiencing it firsthand,” she said.

The family met with clinicians at Shriners Children’s Boston during Belky’s pregnancy. “We walked in with zero knowledge of clefts and were immediately received with such warmth and encouragement. We are forever grateful.”

Avani became a patient when she was born, and her primary provider at Shriners Children’s Boston is currently Kavitha Ranganathan, M.D., co-director of the center. Avani’s first surgery to repair her cleft lip was performed when she was 6 months old. Her current care plan involves yearly monitoring to assess her progress and determine if future surgeries or treatments are necessary. Through the Cleft and Craniofacial Center, patients like Avani have access to an interdisciplinary team of oral surgeons, orthodontists, speech therapists, dietitians and other clinical specialists. Depending on the scope of a child’s diagnosis, they may benefit from the expertise of these specialists as they grow into adulthood.

In describing the care that Avani has been receiving at Shriners Children’s Boston, Belky noted that it was “outstanding.” “The whole team always makes for such a pleasant visit,” she said. “From nurse care manager Sandy Barrett to medical photographer Sue Brogna, all the staff have been welcoming.”

Belky decided to share her family’s story because she believes that parents absorbing a similar diagnosis for their child might benefit from her family’s experience and “bring hope to new parents.” She had kind words for the Shriners Children’s Boston staff, explaining that they always made her family feel at ease. “You could not be in better hands. The hospital staff embraced us, not only as patients, but also as family.”

One experience at Shriners Children’s Boston was particularly meaningful and memorable for Belky and her family. They were waiting for Avani to go into surgery and were understandably anxious. Volunteers from the hospital visited with them, bringing liquid bubbles that everyone could play with, which provided a much-needed distraction.

Belky and Ivan have now become donors to Shriners Children’s Boston. “After surgery, Avani received recovery gifts. We still have a musical seahorse that was gifted to her. This was such a beautiful personal touch and it inspired us to become donors. We hope this beautiful gesture carries on,” Belky said.

Now 6 years old, Belky describes Avani as a sassy and funny child with a joyful approach to life. She enjoys playing Minecraft and absolutely loves axolotls – a type of salamander that lives primarily in the water. As a curious child, Avani enjoys looking at her baby pictures and videos, and loves to point out, what Belky calls, her "magical smile.”