Caroline enjoyed a pleasant pregnancy – she was more than eager for the arrival of her first child, and she was never struck with morning sickness. She was undergoing her 18 week routine ultrasound at Tufts Medical Center when her OB/GYN identified a craniofacial abnormality in her scan and referred her to Dr. Andrew Scott, Medical Director of the Cleft Lip and Palate Program at Tufts Children's Hospital.
“It catches you off guard,” Caroline said. "I expected to go back to work after what I thought would be a routine ultrasound, and instead we spent most of that day at Tufts understanding and processing the diagnosis."
Genetically passed down
However, it was not a complete surprise. Her son Gabriel was diagnosed with cleft lip and palate – the same condition his dad was born with. This occurs during early pregnancy when parts of the baby’s face don’t fuse together properly, resulting in a separation of the upper lip, gum line, and roof of the mouth which can extend up and into the nose.
“If anyone understands the cleft lip and palate experience, it’s my husband Jonathan,” she said. “But obviously it had been a while since his surgeries, so we had to come up to speed with all the new treatments.”
Two weeks later, Caroline and Jonathan met with Dr. Scott for the first of what would be many times. And as he does with all of his patients, Dr. Scott spent an hour going over the diagnosis of cleft lip and palate and answering Caroline and Jonathan’s questions about the road ahead.
“We liked Dr. Scott from day one — he was incredibly caring and good at educating us on every aspect of Gabriel’s condition,” Caroline said. “What we were going through was not the norm by any means, but we were still excited for the journey.”
A team comes together
When Gabriel was born, specialists throughout both Tufts Medical Center and Tufts Children's Hospital teamed up to provide him with the best possible care. When Gabriel was just 6 days old, he began the process of nasoalveolar molding (NAM), a nonsurgical method of closing the cleft lip and gum line and reshaping the nostril before surgery.
“The parents get to see the cleft shrinking and the nose molding right before their eyes, so it’s very valuable for these families,” Dr. Scott (pictured above) said. “To my knowledge, we’re the only program in Boston that currently offers NAM.”
This meant that for the next 9 weeks, Caroline and Jonathan would bring baby Gabriel to the Tufts School of Dental Medicine for weekly adjustments until it was time for his first surgery. Pediatric dentist Dr. Nour Fathi Gowharji worked with Caroline and her family around the clock to make sure Gabriel was doing well throughout this first stage of treatment.
“When the baby doesn’t accept the appliance, it’s very stressful on the parents,” Dr. Gowharji said. “But you would be so surprised to see how adaptable these little ones are – they’re so brave and the parents play a huge role in this.”
Just to make sure the children are comfortable with eating and speaking after each adjustment, Dr. Gowharji will spend up to two hours in a single appointment. For the parents, she tries her best to schedule appointments mid-week and even texts them to check in over the weekends.
“We received nothing but the best from them,” Caroline said. “The team was so encouraging that we actually started looking forward to our appointments.”
Gabriel’s life-changing transformation
Babies born with cleft palate are at risk for poor feeding, which can cause slow weight gain and even dehydration. For this reason, one of our dedicated speech-language pathologists followed Gabriel’s progress from birth and helped him re-learn how to eat after each reconstructive procedure.
“It can be challenging because some of the kids take off quickly and others have a lot of difficulty,” Morgan said. “But the families always have my contact information so it’s worked out well.”
Morgan has been supporting Caroline and Jonathan through this journey since before Gabriel was even born, and their regular communication has allowed Morgan to troubleshoot issues that occur in between appointments.
“These are people we trust — they’re available 24/7 and they give us the assurance that we need,” Caroline said. “I’m so glad that I was a prenatal patient here, because everyone has been with us throughout our entire journey.”
While Gabriel is no longer coming in every week for his dental appointments, Dr. Gowharji and the rest of her team will continue to follow his progress as he grows older.
“Over those first few months we develop strong bonds with these families that don’t go away,” she said. “It seems like second nature to look after these kids and it’s such a joy.”
Dr. Scott performed Gabriel’s first surgery, which involved repairing the cleft lip and nose deformity at 3 months of age in March 2017. In November, Gabriel underwent cleft palate repair and placement of ear tubes. While Gabriel will undergo more surgeries in his future as he grows into a young man, the majority of his reconstruction is complete and for the foreseeable future he is free to be a kid.
“He loves playing outside in the kiddie pool and blowing bubbles,” Caroline said. “We love him more than anything in the world, and he has really taught us how to be strong.”