Jack's Story

When Patty visited her doctor for her 20-week ultrasound, she had no way of anticipating the troubling news she would receive that day.

She was pregnant with her first baby and up to this point everything had been going smoothly. She and her husband Clay were excitedly waiting to meet their son in just a few months.

Excitement turned to devastation when her doctor delivered some difficult news. He said their baby Jack had a cleft lip and possibly a cleft palate. Patty left the office with a pamphlet about cleft lip and palate and more questions than answers. Back at home, Patty and Clay were consumed by the unknown. Their fears are common to many parents facing a cleft diagnosis. “Is it something I did? Will my son be okay? How is this going to change his life?”

When the family was referred to the cleft and craniofacial team at Shriners Children’s Boston, they finally received answers and reassurance. Patty recalls feeling very anxious before meeting with Eric Liao, M.D., Ph.D., then director of the cleft team, to review the results of a fetal MRI. The test would show if Jack’s cleft was affected and how extensive his cleft lip was going to be. When they arrived at the clinic, Sandy Barrett, care manager for the cleft team, was waiting for Patty and Clay. She could barely contain her excitement – the palate was not affected at all, making Jack’s treatment less complicated than it might have been.

Dr. Liao sat with the expectant parents and explained what they should expect after Jack was born, as well as what and when his surgery would be. They felt incredibly relieved and confident Jack was in the best hands possible.

When Jack had surgery last June to repair his cleft lip, the entire staff at Shriners Children’s Boston, from the front desk, to recovery, to the nurses and feeding specialists, were amazingly helpful to the family. “We felt so blessed to be taken care of by such a great hospital staff. When we went home after Jack's surgery and had questions, I was able to call any time of night or day and get the answers I needed,” Patty said.

By sharing Jack’s story, Patty hopes to reassure other families going through similar circumstances that all will be ok. “The diagnosis and the unknown are so scary at first, but our babies are so strong and resilient. All of that fear melts away when you meet your baby for the first time!” she added.

On top of the education and resources shared by the Shriners Children’s care team, social media has been a great tool to connect with other families going through the same journey. After Jack’s diagnosis, Patty and Clay joined a cleft lip and palate support group on Facebook, which helped them not only learn tips and tricks for what to expect with things like feeding, but also provided valuable support to know they were not alone. It has been very meaningful for the family to learn from the experiences of others.

“Shriners [Children's] has given our family all of the tools that we need to help Jack succeed in his cleft lip journey, and we could not be more grateful for each and every person involved in his care. I would urge any family facing a cleft diagnosis to seek care at Shriners Children’s Boston,” said Patty.