Brody’s Parents Encourage Caregivers to Rely on the Support System at Shriners Children’s Boston

Brody is a bubbly toddler who is showing off his smile after several cleft repairs at Shriners Children’s Boston.

Lisa and Doug learned of their son’s cleft lip diagnosis at his 14-week ultrasound. At 18 weeks, they discovered Brody also had a cleft palate. In exploring care for Brody once he was born, his parents decided to get two opinions regarding surgery for their son. After meeting with clinicians from the Cleft and Craniofacial Center at Shriners Children’s Boston, Lisa and Doug knew they had found the right place for Brody. The center is a collaborative program with MassGeneral Hospital for Children. “The coordination was seamless. Between conversations with the doctor and conversations with the care manager, we knew our little guy would be in the best hands at Shriners Children’s Boston,” explained Lisa. “We never ended up pursuing a visit with the other hospital.”

The experience for Brody and his family at Shriners Children’s Boston has always been exceptional, including for each of his four surgeries: two for his lip and two for his palate. “Every time we step through the doors, everyone is so friendly and welcoming,” Doug shared. “From pre-op to recovery to inpatient, the nurses are attentive, accommodating and provide exceptional care.”

Lisa noted how great Brody’s team was about checking in after he was discharged. “Sandy Barrett is so responsive and helpful whenever we have a question.”

Sandy Barrett, BSN, RN, CCM, is a care manager at Shriners Children’s Boston and works with children who have a craniofacial diagnosis. Sandy’s role involves advocating for patients and providing them with resources. Care managers also look at the whole picture of care, including what a patient’s family might need during the treatment process. “For Brody, he had a lot of medical and surgical treatment right after his birth,” explained Sandy. “There was a lot of education for the family. Along with being a resource for parents, we are open to any questions they may have.”

Lisa and Doug are both impressed with the Shriners Children’s Boston team and the care plan for their son. “They have done an incredible job tailoring care specifically for Brody,” Doug said. “Before, it was getting through each surgery, now the focus is on speech and nutrition as he learns to use his new mouth.”

While Brody focuses on his new goals since his lip and palate repairs, he attends the cleft clinic at Shriners Children’s Boston, where patients receive a comprehensive care plan to meet their clinical and developmental needs. Children can meet with speech pathologists, orthodontists, dietitians and plastic surgeons in a single visit. “We were blown away by how much time speech, nutrition, occupational therapy and Sandy spent with us,” said Lisa.

Doug and Lisa have made connections with other craniofacial families at Shriners Children’s Boston, like Sarah and Gill, whose son, Beau, was treated for a cleft lip and palate. Brody is Doug and Lisa’s first child and it was a frightening time for the new parents. “We didn’t know anyone with a child born with a cleft when we received the diagnosis; it was very lonely and scary until we met Beau’s parents,” Lisa explained. “From our first meeting, they’ve been a wealth of information and such great advocates. It helped us feel better-equipped to support Brody through each surgery.”

Both Lisa and Doug recommend finding connections with families who have been through similar situations, which they found helpful. “After a cleft diagnosis, the cleft seems all-consuming, but keep in mind life won't always be about the cleft,” Lisa explained. “You will be so proud of your strong little warrior.”

Doug and Lisa are also reminding caregivers to take a moment to pause and breathe. “Know everything will be okay,” said Doug. “Once your child is here, embrace the fact that things are going to be a bit different but the more you embrace it, do what needs to be done, and advocate for your child, the quicker you'll navigate the storm.”

When Brody was born, Lisa and Doug texted a photo of their son to Sarah and Gill. The couple replied quickly, sending over a video of Beau. “Beau responded with so much excitement and pride, ‘He has my boo boo.’ It was just what we needed.”

Brody is a typical active toddler, whose parents would often run out of ideas to keep him busy while at Shriners Children’s Boston. “When his nurse came in with a playmat and a wagon full of toys, it was so much fun for Brody and so helpful to us exhausted parents,” said Lisa. In addition to playing with bubbles and balls, Brody loves being silly and making people laugh, reading books, and listening and dancing to music.

Lisa and Doug said they will always cherish Brody’s first smile after his cleft repairs, which was made possible by Brody’s doctor, William G. Austen, M.D., a plastic surgeon at Shriners Children’s Boston. “We can't thank Dr. Austen enough for being as good as he is at cleft repairs,” Doug said. “Sandy Barrett has been so helpful and such a comfort for us as well as all the nurses, doctors, OR staff; really everyone there is such a gem, and we are so grateful for them.” Both parents recognize they still have a long road ahead but feel it’s “less intimidating knowing Shriners Children’s Boston will be caring for Brody along the way.”