With a captivating smile and the help of his loving parents, 9-month-old Saint is raising cleft awareness across social media one adorable picture at a time.
Carly and Max have been sharing their baby’s cleft journey in order to promote facial difference acceptance and to help other families navigate their own cleft experiences. “If sharing Saint’s journey can impact even one person positively, then we achieved what we set out to do,” Carly said.
Cleft Care Begins Before Birth
Saint’s cleft journey began 20 weeks into Carly’s pregnancy, when obstetricians at Massachusetts General Hospital detected his cleft lip during a routine scan. While Carly and Max had already known that Saint was genetically predisposed to the condition, it still came as a shock. “We are guilty of having spent a lot of energy on fear, worry, acceptance and continuously asking ourselves why this had to happen,” Carly explained.
The care team immediately referred the anxious couple to Eric Liao, M.D., co-director of the Cleft and Craniofacial Center, a collaboration between Shriners Children's Boston and MassGeneral Hospital for Children.
“We visited Dr. Liao prior to Saint’s arrival to learn more about Saint’s expected treatment plan and cleft lip repair procedure,” Carly said. “We left the appointment not only with an understanding of the anticipated course of action for repairing Saint’s cleft, but also with a sense of reassurance that we were going to get through this.”
Love and Support at Shriners Children's Boston
The specialists at the Cleft and Craniofacial Center worked closely with Carly and Max over the next few months to prepare for the procedure, which Dr. Liao performed once Saint turned 5 months old. While the surgery went smoothly and Dr. Liao successfully repaired both Saint’s lip and his nose, the family’s stay was incredibly stressful. After all, their baby was undergoing a life-altering surgical procedure during a global pandemic! Nevertheless, the family did find comfort and compassion where they needed it most – right on our inpatient unit.
“While every single person that we had the pleasure of meeting at Shriners was fantastic, we will never forget our night nurse, Tracey,” Carly said. “Tracey not only took care of Saint, but she took care of us: two first-time parents, both physically and emotionally drained, going through the darkest hours of our lives. She will always hold a special place in our hearts.”
While every single person that we had the pleasure of meeting at Shriners was fantastic, we will never forget our night nurse, Tracey. Tracey not only took care of Saint, but she took care of us.
Dr. Liao explained to the family that Saint will most likely not need any additional surgeries in the future, but they will know for sure when he is about 7 or 8 years old. In the meantime, Carly and Max are happy to know that the cleft team will continue to support Saint throughout this time. “At every single appointment with Saint’s cleft team, it feels as if Saint is their only patient in the world,” she explained. “Our confidence in Saint’s cleft team has never wavered, because they kindly keep us informed, confident and prepared.”
Connecting Virtually with a Supportive Community
Carly and Max began documenting Saint’s cleft journey on social media a few months after he was born, and the only thing they regret is not sharing his story sooner. They have since seen a tremendous outpouring of love and support from families in similar situations, which they say has been really comforting and reassuring.
“There is an entire community of people, with open arms, who have gone through what you are going through,” Carly said. “You are not alone. In a time when there are many unknowns, it is comforting to hear the words of those who have walked in your shoes and can relate to your situation because they themselves have been through it.”
Now Carly has a piece of advice for families who are in the position she once was – scared, nervous and not knowing what to expect in the face of a cleft diagnosis. “The reality is that so much beauty has come out of this journey – a deepened bond between a couple, a life that is exponentially richer because of one little boy, and the life lesson to treat others with compassion and acceptance,” she said. “The journey becomes what you focus on and where you let your energy shift to. So, focus on the positive. We promise your family will get through it!”
