After a round of IVF, Amanda and Phil could hardly contain their excitement to hear, ‘It’s a boy’ from their ultrasound technician. Ten minutes later, Amanda’s doctor delivered a different kind of news: their baby boy would be born with a cleft lip and palate. Their excitement turned to nervousness and worry as they were referred to Connecticut Children’s.
Charles Castiglione, MD, MBA, FACS, a plastic surgeon on the Craniofacial Team at Connecticut Children’s offered their first glimmer of hope. The medical team provided answers, reassurance and a full plan for the baby’s care journey. Armed with confidence in their care team, Amanda and Phil anxiously awaited the arrival of their first child.
Amanda delivered Brian, a six-pound boy, who had a long journey ahead. At 10 weeks, Brian had his first surgery, where a Latham appliance, a device used to close the palate and move the gum line closer together, was secured to the roof of his tiny mouth. Daily, Amanda and Phil were required to turn the screw to activate the device and narrow the gap. The fragile appliance required delicate care, which was a challenge for both an infant and first-time parents. Brian had to wear arm restraints so he wouldn’t accidentally touch it and had to be fed by dropper, as a bottle could alter the appliance’s alignment.
Food intake becomes challenging
Brian had difficulty tolerating pain and with the altered feeding technique, his food intake was significantly limited. Amanda and Phil brought Brian back to the hospital, where he received IV fluids and pain medications. At last, on the sixth day in the hospital, Brian finally took five milliliters of formula through a syringe and soon was able to go home. “Those were terrifying days,” says Amanda.
Six weeks later, Brian was back at Connecticut Children’s for lip-closure surgery. The Latham appliance was removed and his lip was surgically repaired. Five months later, surgery to repair the hard and soft palate, his third, was performed at the hospital.
Brian’s fourth surgery required removing scar tissue, retouching the lip and restructuring his nose. Brian is on schedule for at least two more surgeries. At age ten, his surgeons plan to take bone from his hip and insert it into his gum line. And, during his late teens, he will likely need one final surgery to adjust his jaw line.
Brian is thriving as a very active boy who loves soccer, football, baseball and golf. He is quick with a joke and proudly serves as big brother to Collette, two years his junior. While he started school during the COVID pandemic, much of his facial difference was hidden with a mask. But when children were no longer required to wear masks, Brian wanted to explain to his classmates why his smile looked different.
Amanda says, “A cleft lip and palate isn’t just a cosmetic defect, as people think. It affects a child’s eating, breathing and speech.” Amanda and Phil remember the seven days they spent in the hospital praying and hoping their baby would eat again. Today, Brian has embraced his facial differences and his confidence empowers him to share what makes him so unique.