Grace is a happy, thriving baby who celebrated her first birthday in June. Always smiling, Grace has started talking and can say mama and dada. She loves going on walks, playing in the pool and singing nursery rhymes.
Grace came into the world unexpectedly at 35 weeks. “She was delivered by emergency C-section and monitored by the neonatal intensive care team. One of the clinicians came to tell us that, while Grace was doing great, she was born with a cleft palate. At the time, we had no idea what that actually meant. We had heard of a cleft lip before but never of a cleft palate,” Grace’s mother Roseanne recalled.
July was Cleft and Craniofacial Awareness Month. Grace’s parents, Roseanne and Rob, shared their experience to help other families who are in similar circumstances. “Having a child born with a cleft palate can be challenging, stressful and isolating, especially when it comes as a complete surprise to your family,” Rob shared.
The day after Grace was born a surgeon examined her cleft palate and gave the new parents a formal diagnosis. The family then had a consultation when Grace was two months old to review her proposed treatment plan. After that appointment, Roseanne and Rob did some more research and met with other clinicians.
This led them to Shriners Children's Boston and Eric Liao, M.D., director of the Cleft and Craniofacial Center. The center is a collaboration between Shriners Children's Boston and MassGeneral Hospital for Children.
“One of my childhood friends used to work at Mass General and she gave me Dr. Liao’s contact information. After doing more research on surgeons in the Boston area and after meeting with Dr. Liao and his team at Shriners, we knew they were the team we wanted for Grace,” Roseanne explained.
Grace had surgery at Shriners Children's Boston when she was 8 months old. “On surgery day, my husband and I were obviously very anxious and the clinical team updated us frequently and made sure we knew what to expect after Grace’s surgery,” Roseanne said.
After doing more research on surgeons in the Boston area and after meeting with Dr. Liao and his team at Shriners, we knew they were the team we wanted for Grace.
Grace and her family live 3 ½ hours from Boston. Initially, her parents were a little worried that the distance would prove to be a challenge for follow-up care. However, Roseanne was impressed with how well everyone on Grace’s care team stayed in touch with the family and answered all their questions. “We were even able to set up virtual visits so we didn’t have to travel during the winter months,” she said.
Roseanne said that Dr. Liao made a point of keeping the family’s follow-up appointments light, often making them laugh. Grace’s care manager, Sandy Barrett, was available whenever the family had questions. “Sometimes we would forget to ask a question during an appointment and Sandy was always responsive when we followed up,” Roseanne said.
The family has a particular appreciation for Jenny Shiel, a Shriners Children's Boston nutritionist. “Jenny was wonderful with responding to my questions before and after surgery. We found that feedings were the most stressful and she always reassured me that we were doing the right things for Grace,” said Roseanne.
The family was drawn to Shriners Children's because “The hospital was designed for children and it showed through and through! Every staff member was so friendly and patient. During appointments, Grace was so calm because the staff was so calm! We loved the experience they have working with babies and children, and their knowledge about babies with cleft palates is amazing. I felt like I never had to Google anything because they gave us the facts and information that we needed while we navigated this journey,” said Roseanne.
While multiple appointments, surgery and the recovery process can all take an emotional toll, Roseanne and Rob explained that Dr. Liao and the Shriners Children's Boston cleft team have been wonderfully supportive.
Grace will have follow up care at Shriners Children's Boston as needed. Her mom and dad report that Grace loves having adventures with her 4-year-old brother, John, laughing with delight when he chases her around the house. She loves to feed herself and is a big fan of her grandmother’s homemade Italian cooking! “My husband and I struggled with infertility and have had a lot of heartbreak. Grace has been an absolute blessing and has completed our family,” Roseanne said.