Shriners Children's Boston Patient Family Embraces Volunteerism

Since the day Sarah discovered she was pregnant with her second child, Beau, she had an uneasy feeling that something was different from her first experience.

Her initial uneasiness turned out to be justified. Sarah’s 19-week ultrasound resulted in a diagnosis of cleft lip and cleft palate. Sarah and her husband, Gill, struggled with fear and uncertainty as they absorbed the news.

When Beau was born, he experienced respiratory issues and coded only minutes after delivery. Once Beau was stable, he was discharged from the hospital, but concerns soon arose as he failed to thrive. Beau was not gaining weight and was vomiting frequently. Because of his cleft, the vomit was forcefully passing through his nasal cavity. Beau cried in pain, which eventually led to an umbilical hernia. After months of extensive testing, the worried parents finally had answers. His cleft was causing Beau to swallow air, which induced vomiting and gas pains.

The family turned to the Cleft and Craniofacial Center at Shriners Children’s Boston, a collaboration with Mass General Hospital for Children, and immediately knew they had found the right place to treat their son. Five years later, after several surgeries, Beau is thriving.

As Beau got older, Sarah knew she wanted to do more to support other families just learning that their child would be born with a cleft lip or palate. Sarah remembers wanting to talk with parents who had already experienced some of the challenges her family would face. She realized she could be that person for others and volunteered her services as a parent mentor. She reached out to Beau’s care manager, Sandy Barrett, BSN, RN, CCM, to offer herself and her husband, Gill, as parent resources. “It just kind of took off from there,” Sarah said.

Sandy noted, “When Sarah contacted me, I realized it was a great opportunity to connect her with some families who were asking for just what Sarah was offering – the chance to speak with someone who had already gone through the medical journey they were just beginning.”

The most frequent question Sarah said she gets from other families is curiosity about what Beau looked like when he was born, compared to today. “There’s comfort in seeing the results and being able to visualize an ‘end’ result,” she said.

Over the past year, Sarah and Gill have connected with several families, including Brody’s. His mom, Lisa, said, “We didn’t know anyone with a child born with a cleft when we received Brody’s diagnosis. It was very lonely and scary until we met Sarah and Gill. From our first meeting, they’ve been a wealth of information and such great advocates. We’ve found it to be so helpful learning from parents who have been through caring for their child after these surgeries. It helped us feel better equipped to support Brody through each surgery."

Depending on the complexity of a child’s craniofacial diagnosis, a typical treatment plan can extend for years and include multiple surgeries. It can also include appointments with a speech therapist, orthodontist and nutritionist. Sarah emphasized that, although a facial cleft can be repaired and might not be noticeable when a child grows into adulthood, “that doesn’t mean this journey is easy.”

Lisa noted that spending time with Sarah and her family “helped us realize things were going to be OK. They showed us life won’t revolve around this cleft and that we would be able to enjoy our precious little boy for the person he is.”

Sarah encourages families to be champions for their children. “You are your child’s biggest advocate. If you don’t feel like something is right, be their voice,” she said.

Sarah and her family’s support of Shriners Children's Boston goes beyond the perspective they can offer to other families. They co-chaired Shriners Children’s Boston’s signature fundraiser, the Boston Haunted Walk, in 2022, and have spoken at local events highlighting their experience with the hospital.

Taking an active role in the Boston Haunted Walk was an easy decision for Sarah and Gill. Sarah noted that Beau absolutely loves Halloween and described the fundraising event as “magic.” Watching children with their families and caregivers, many in costume – enjoying the day and each other, is an uplifting experience. “They’re all just kids that day. There are no treatments, no surgeries, no therapies, no stress, no anxieties – it's kids being kids and it's pure magic,” she said.

Sarah noted that she wanted to give back for what some may think is an unusual reason. “My inspiration isn’t what most would think – it’s fear. I was afraid. I was fearful of all of it, the diagnosis, the public image, the lack of knowledge, support, the feeling of isolation; knowing my husband and I knew nobody else with this diagnosis. However, fear is an emotion that I couldn’t let win, so Beau was my catalyst. I can’t think of an organization more deserving than Shriners Children’s to support,” Sarah said.