Cleft Lip and Cleft Palate Care at Shriners Children’s New England "Best Decision Ever"

A chance encounter at the Big E led Albany siblings to Shriners Children’s.

Adopted from China between the ages of 1 and 3, Matt, Teddy and Bethany were all born in need of cleft lip and palate care. Each had surgery prior to their adoptions, but required more extensive treatment after arriving in the United States. While their parents, Melissa and Andy, had some initial success finding experienced providers near their home in Albany, New York, it required an enormous amount of research. They struggled to find appropriate orthodontic care for all three children, getting different answers from each specialist they visited. Matt and Teddy both had issues with their speech and had difficulty being understood. No one could provide the family a clear path forward.

“I had exhausted everything that was available to us in Albany, and our insurance company had classified everything else as “cosmetic” and not necessary to seek out-of-town care,” said Melissa. “I had nowhere to turn to help my kids.”

At the height of the family’s frustration, a billboard went up in downtown Albany advertising the services available at Shriners Children’s New England in Springfield, Massachusetts. Melissa contemplated making a phone call to get more information. Then, that weekend, her parents took the kids to the Big E, New England’s Great State Fair, in West Springfield, Massachusetts, where they were approached by a kind man who suggested seeking treatment at Shriners Children's New England. That man turned out to be Philip Stoddard, M.D., a renowned plastic surgeon from Shriners Children’s. He explained the benefits of working with a multi-disciplinary team for cleft lip and palate care.

“My parents relayed the information to us, and I made the call on Monday,” said Melissa. “The rest is history – it has been the best decision we ever made for the health of all three kids!”

On the Right Path

Both Matt and Teddy had pharyngeal flap surgery at Shriners Children’s, performed by plastic and reconstructive surgeon Kristin Stueber, M.D. This procedure addresses nasal speech by lifting a flap of tissue from the back of the child’s throat and attaching it to the back of the palate, which prevents air from leaking out through the nose when speaking. Matt and Teddy now speak clearly and no longer require speech therapy.

Teddy had additional bone graft surgery which was equally successful. Bone grafts help cleft lip and palate patients by improving bone structure, development and overall appearance. Bethany is also scheduled for bone graft surgery this fall, and is much less nervous about this next stage of treatment after seeing her brothers’ speedy recoveries. The family also found the orthodontic care they were seeking from Aaron DeMaio, D.M.D., an orthodontist on the cleft lip and palate team.

“We have been to so many different medical facilities, and nothing compares to Shriners,” said Melissa. “This team of professionals were the most experienced doctors and therapists that we have ever encountered, and it was such an incredible sigh of relief knowing that there would be a highly-researched and successful treatment plan for each of our children.”

The family travels to the Friday cleft lip and palate clinic about every four to six months for follow-up care. Instead of feeling anxious about the medical appointments that await them during the 90-minute drive, everyone actually looks forward to each visit.

“They love the clinic, because there is always some sort of present,” said Melissa. “The fun environment and the incredibly nice people are all part of the picture that reduces stress for kids.”

That allows all three teens to stay focused on their busy lives. Matt, 16, is enrolled in a highly selective public school program for aviation in upstate New York. He is also an extreme athlete, having made it to the U.S. Nationals for freestyle skiing in his first year of competition. Influenced by the treatment he has received at Shriners Children's, Teddy is interested in pursuing a medical career. He is 15, plays bass in his school jazz band and runs cross country and track. Bethany had significant delays when she came to her family from China at age 2, and was unable to walk, crawl, talk or chew. Now 13 and an active eighth-grader, she backpacks, kayaks, plays lacrosse and participates in Scouts BSA. According to Melissa, Bethany is always the most cheerful person in the room.

For Matt, Teddy and Bethany, one of the biggest benefits of being treated at Shriners Children's is the sense of belonging they feel. “It is the most welcoming, incredible facility we’ve ever seen,” said Melissa. “My kids come in to the monthly clinic and see others who look just like them. They have made friends and chatted with their peers about surgery.”

A Dream Team

The whole family has formed special bonds with the staff at Shriners Children’s. Melissa is grateful for the incredible pre- and post-op care her kids have received, recalling a time Teddy played Connect Four in the pre-op room for a full hour with a member of his care team. “Our kids’ lives have been changed by Shriners Children’s,” she said.

After five years of being Shriners Children’s patients, Melissa is passionate about helping others by sharing her family’s experience. “Shriners took the guesswork out of the treatment plan for me so that I could focus on parenting, instead of the incredible amount of medical research that I had been doing,” she said. “Parents shouldn’t have to spend that much time trying to assemble their own team, when the best team already exists at Shriners!”