When the young couple found out during a routine ultrasound that their baby would be born with a cleft lip and palate, they were understandably worried about the unknowns.
“But that feeling was short lived,” Angelee said, “and we immediately started to research and learn more about it and options for treatment. During that same ultrasound, Angelee and her boyfriend John learned the baby’s gender, and agreed on a name the very next day.
Their son would be named John Freddie, after his father and his father’s best friend who passed away less than a year earlier.
“It was rough,” recalled John, “and that’s why when we heard the news about the baby’s cleft, it was just another step for us, and we were determined to walk right through it.”
Little did they know they would need to lean into that mindset again, just days after Freddie was born.
During the pregnancy, they met with Melisande Ploutz, PNP, team coordinator and nurse practitioner for the University of Rochester Medical Center’s Cleft and Craniofacial Center, known nationally for its excellent clinical outcomes and research.
“Mel talked to us about everything, and all the different options,” said Angelee, an administrative assistant at SUNY Brockport, Rochester Educational Opportunity Center. “We decided the NAM was definitely the right thing for Freddie.”
The NAM, short for nasoalveolar molding, is a pre-surgical structural treatment provided to infants born with cleft lip and palate by Erin Shope, DMD, a pediatric dentist at Eastman Institute for Oral Health.
Freddie was born in late February, weighing exactly 8 pounds, with a full head of dark hair and the biggest, most beautiful brown eyes destined to melt hearts.
Dr. Shope came to the hospital and fitted Freddie for the NAM. They were discharged from the hospital and brought their 3-day old baby to meet the rest of the Craniofacial Team, led by Clinton Morrison, MD, a URMC plastic surgeon who specializes in treating children and adults with craniofacial conditions.
“When Dr. Morrison came in, he immediately noticed something,” John said. “He placed his hand on Freddie’s head and said ‘we need to get a CT scan right away’.”
Freddie was diagnosed with craniosynostosis, which occurs when a baby’s skull bones fuse together too early before the baby’s brain has fully formed.
The couple went through genetic testing, but it didn’t show any connection.
Dr. Morrison quickly reassured the new parents. Craniosynostosis is pretty common, occurring one in 2,500 births, with no known cause. However, Dr. Morrison added that it is very rare for an infant to be born with both the cleft lip and palate and craniosynostosis.
“We needed to wait until Freddie was 4 months old to do the surgery on his skull,” said Dr. Morrison, who has performed surgery on some 200 infants with craniosynostosis.
In the meantime, Angelee and John brought Freddie to Eastman Dental to see Dr. Shope once a week to adjust the NAM and measure his progress. The NAM helped bring symmetry to Freddie’s nose and mouth.
“Dr. Shope is amazing and the reason he can eat 48 ounces of milk a day and eat solid foods,” said Angelee, including Freddie’s favorite banana oatmeal.
“Using the NAM is a big commitment, and can be challenging and sometimes frustrating,” said Dr. Shope. “Angelee and John have done a tremendous job with Freddie, as demonstrated by his progress.”
“We didn’t want to send Freddie to daycare while he is using the NAM,” John explained. “Sometimes Freddie spits up during feeding and we prefer to be the only ones to take it out, clean it and put it back in.”
To honor her late brother, Jamie Rauscher and her family from Waterloo, NY, established a fund to help families with NAM supplies, gas cards and parking to help offset costs. Her nephew Nathan was born with cleft lip and palate and was a patient at Eastman Dental.
“We greatly appreciate their help in providing the necessities we need to get him closer to a successful surgery,” Angelee said. “We thank them, and are grateful.”
Dr. Morrison performed the successful skull surgery, careful to make the incision so the scar would hide in his hairline as he grows older.
“We have had such a great team, especially Dr. Shope and Dr. Morrison,” Angelee said. “They really made this process easy. They are legendary.”
“Freddie’s case is an excellent example of team work across specialties, between dentistry, neurosurgery, and plastic surgery, all working together to do the right operations for Freddie at the right times,” said Dr. Morrison, who performed Freddie’s lip repair this month.
Despite the surgeries and worry the first few months, Freddie has helped ease the painful grief of losing their close friend.
“It’s like he came back a year later,” John said. “The baby stares at Freddie’s picture on the wall and babbles to it all the time.”