Decades in the making: JR’s journey with craniofacial care

Last fall, JR Foley posted on Facebook to thank members of the Craniofacial Program at Boston Children’s Hospital for seeing him through corrective jaw surgery. The post wasn’t JR’s first note of thanks, and it wasn’t his first surgery, either. JR’s been receiving care at Boston Children’s Hospital for more than 30 years.

Treating the whole child

JR was born with a rare form of craniosynostosis, which is the premature closure of sutures between bones in the skull that prevents the skull from growing normally. JR’s craniosynostosis also affected his middle face bones, eye sockets, jaw, and teeth, and caused breathing problems, including obstructive sleep apnea.

JR’s parents, Karen and Jim, knew from the start that treating the effects his syndromic craniosynostosis would be a multi-step process, so they brought him to Boston Children’s when he was a toddler because of the specialized approach of the craniofacial program. They have since befriended a team of providers who’ve been able to address all aspects of JR’s care, including dentistry, neurosurgery, plastic and oral surgery, psychiatry, and other areas. “They’ve treated my whole child,” says Karen. “Not just the issues they have to work on surgically.”

Weighing a tough decision

Even though they’ve had total confidence in his care, JR has dealt with anxiety around having surgery and anesthesia, and it’s been hard for Karen and Jim to watch their son struggle. That’s why they’re so grateful for the attention and compassion he receives at Boston Children’s — in particular from Dr. Cory Resnick, an oral and maxillofacial surgeon who has performed multiple procedures to help treat JR’s jaw growth abnormalities and airway obstruction, including the corrective jaw surgery last year that helped align his upper and lower jaws and create more space for breathing.

Corrective jaw surgery also reshapes the face, so while JR and his parents always knew the surgery was a possibility, they weren’t in a rush to pursue it. “We never thought we would have the jaw surgery because we didn’t feel we needed to change JR’s looks,” Karen says. But when JR started have having trouble chewing, swallowing, and breathing in his sleep, they eventually decided to move ahead with the surgery.

A personal connection

When JR began experiencing severe anxiety in the weeks leading up to his corrective jaw surgery, Dr. Resnick sent him a note of encouragement and offered to answer any questions or concerns he may have —at any time, day or night. It meant the world to JR and his parents.

“I’m sure it only took him a few minutes to write the note,” Karen says. “But he doesn’t realize the impact it had on JR. It really relieved some of the anxieties he was having.” JR wholeheartedly agrees.

“The guy is absolutely incredible,” he says about Dr. Resnick. “He’s the biggest reason I gave my shout-out on Facebook.” But JR’s also incredibly grateful for the love and support of Karen and Jim.

“I also have to give a shout-out to my parents,” JR says. “I was pretty apprehensive before my surgery, but they really helped me feel good about my decision.”

A bittersweet graduation

JR’s jaw surgery looks to be the last surgical procedure he’ll need as part of his treatment, and given his age, he and his parents have begun transitioning his care to adult-care providers. “Once you leave Boston Children’s, it’s a whole new world,” Karen says of the changes. JR’s team has helped navigate the next steps, but it’s still bittersweet. Because, Karen says, “Boston Children’s sets the bar pretty high.”

Learn more about the Craniofacial Program and the Oral and Maxillofacial Surgery Program within the Department of Plastic and Oral Surgery at Boston Children’s Hospital.