"Personalized and Empathetic" Craniofacial Care at Shriners Children's Boston

Miriam and Brett discovered that during a routine 20-week anatomy scan, their daughter, Amelia, would be born with a unilateral cleft lip and possibly a cleft palate.

To help ease the couple’s concern, their obstetrician arranged for an introduction to the Shriners Children’s Boston cleft and craniofacial team so they could learn more about the diagnosis and better understand what treating a cleft lip and/or cleft palate involves. The cleft and craniofacial center at Shriners Children’s Boston is a collaborative program with Mass General Hospital for Children. In a single visit, patients have access to an interdisciplinary team of oral surgeons, orthodontists, speech therapists, dieticians and other clinical specialists. Depending on the scope of a child’s diagnosis, they may need access to all of these specialists as they grow into adulthood.

“We decided to bring Amelia to Shriners Children’s Boston for care because their staff came across as very knowledgeable about her diagnosis, and we knew that they would be the right fit for us,” said Miriam. Amelia became a Shriners Children’s Boston patient shortly after she was born. Kavitha L. Ranganathan, M.D., co-director of the cleft and craniofacial center, performed lip and nasal surgery on Amelia when she was just 3 months old.

Dr. Ranganathan will follow Amelia as she grows, adjusting her plan of care as needed. Amelia returns to Shriners Children’s Boston regularly for evaluation by the interdisciplinary team. “Children receiving care for a craniofacial condition such as a cleft lip or palate often have specific needs at different phases of their development. They may benefit from seeing our staff nutritionist early on and an orthodontist once they are teens. A benefit of the care we provide at Shriners Children’s Boston is that all of these specialists can be available as part of one appointment, which makes it easier for patients and families to access the services they need,” said Dr. Ranganathan.

Brett noted that this approach is convenient for families. “It takes the burden from our family since there aren’t multiple appointments with her various specialty departments. She receives personalized and empathetic care from each of her team members at one appointment."

Brett and Miriam appreciate the thoughtful support that Dr. Ranganathan consistently shows their family. Brett emphasized, “We met with her when my wife was pregnant with Amelia. She performed Amelia’s cleft repair and continues to follow Amelia closely – even reaching out personally to check in on her well-being between appointments. She has a genuinely empathetic nature and put us at ease that Amelia was in the best possible hands.”

The entire clinical team has supported their family. Miriam shared that right after Amelia’s cleft lip and nasal revision surgery, when she was brought to the pediatric acute care unit, child life specialists stopped by her room with age-appropriate toys, a blanket and other comfort items. Miriam said, “These items were able to provide joy for Amelia in her postoperative period, which is arguably the hardest part of her cleft journey so far – we will always cherish them because of this.”

Miriam also expressed gratitude for the Shriners Children’s Boston nursing staff. “The nurses who cared for Amelia were incredibly supportive of us throughout her recovery. It must not be easy to work with sick and recovering children, but Amelia’s nurses brought a calm and reassuring presence with them each time they entered her room. They took their time with her care and helped to ease our anxieties throughout her stay,” said Miriam.

Amelia is described by her parents as a “sassy and sweet” little girl who loves playing with her puppy siblings Buster and Nora, and listening to music, especially from the movie Moana. Although not quite a year old, Brett noted Amelia exhibits a strong will and is already expressing her opinions. He said, “Amelia is working on her verbal communication skills and enjoys practicing talking in the mirror.”

Miriam shared some wisdom for parents who are just learning about their child’s cleft diagnosis. “The moment you learn about your child’s cleft is hard, as you will likely experience a swarm of emotions and concerns for their well-being. After that initial moment, the diagnosis becomes less and less intimidating. Our cleft babies and children are some of the toughest out there, and with your love and support, they will be able to live a happy and healthy life, just like any other child. We consider ourselves lucky to have been able to love our daughter, Amelia, with two smiles,” she said.