Getting and giving support for cleft lip and palate

care for cleft palate

Jack Dolan came into the world with a laugh. His mother, Erin, was mid-chuckle during labor when he was born — “a really joyful entrance,” she says. Looking down at her new son, she and her husband, Jimmy, breathed sighs of relief. “We took one look at him and thought, ‘He’s beautiful,’” she remembers. “We knew then that everything was going to be okay.”

It was a happy celebration after a pregnancy sometimes marked by stress and anxiety. During ultrasonography, Erin and Jimmy had learned that Jack would be born with a bilateral cleft lip and palate. Erin, a nurse practitioner, had noticed that the technician was spending a lot of time viewing his face and head. “We were worried that he might have even more serious problems,” she says. “When they said it was a cleft, I thought, ‘We can handle that.’”

Despite this reassurance, she was still concerned. “I tried to avoid Google,” she admits. “The only question my husband and I asked was, ‘Who should we see for this?’” After doing some research, the answer was clear: Dr. John Mulliken in the Cleft and Craniofacial Center at Boston Children’s Hospital. “We were prepared to go anywhere,” she says. “We were lucky that Boston Children’s is right in our backyard.”

care for cleft lip

Kailyn’s story

Like many parents, Michelle Riley posts photos of her children on social media, sharing their adorable moments and milestones. But when she posts pictures of her middle daughter, Kailyn, she sometimes adds a special hashtag: #cleftstrong.

Kailyn, now 4 years old, was born with a cleft lip, which was diagnosed by ultrasonography and other imaging tests while she was still in the womb. After being referred to Mulliken and Boston Children’s, she underwent a series of surgeries to repair the cleft. Today, she’s a goofy girl with a big, gorgeous smile, but Michelle still remembers the anxiety she felt during her pregnancy.

“I didn’t want to look at a lot of information about cleft lip when I was pregnant because it scared me,” she says. “Now I want other people to know that educating yourself and reaching out to other parents can really help ease those concerns.”

successful repair of cleft lip

Making connections

Michelle — who is an active member of several online parents’ groups for cleft lip and palate — has found herself paying that support forward. After Kailyn’s story was published here last year, she received messages from parents all over the world who also came to Boston for care. Yet her most special connection was forged closer to home.

“Michelle is very close friends with my brother- and sister-in-law,” says Erin. “We met her family, including Kailyn, socially on a few occasions. When Jack was diagnosed with a cleft lip and palate, we immediately thought of her.”

Knowing someone else who has a child with a facial difference has been invaluable to Erin and her husband. “I have a medical background, but Jimmy doesn’t,” she explains. “Before Jack was born, he couldn’t quite visualize a cleft. I was able to point to Kailyn as an example. She’s beautiful and thriving, which helped alleviate a lot of our stress about it.”

before cleft palate surgery

Reaching out

Having friends who are a bit further along with the care process has been helpful, too. “Even before Jack was born, Michelle and Kevin were able to talk with us about the roller coaster of emotions that can accompany this diagnosis and treatment,” says Erin. “We know we’re very fortunate that this is Jack’s only challenge, but it still hasn’t been easy. The day of his first procedure to repair his cleft lip was one of the hardest days of my life.”

That procedure — and a second operation to repair his palate — was made easier by support from not only the Rileys, but from Jack’s care team as well. In addition to Mulliken, nurse Olivia Oppel has played an integral role in his treatment. “Olivia is like that best friend who’s there when you need her,” says Erin. “She’s always available to answer questions and reassure us.”

successful cleft palate repair

An ongoing journey

These days, Jack is a “typical toddler” who loves being active and playing with his older sister. Like Kailyn, he’ll likely need speech therapy at some point — but that hasn’t stopped him from chatting up a storm. And his parents are taking some heartfelt lessons from Kailyn and her family.

“We’re realizing this is a journey that doesn’t end with surgery,” says Erin. “Kailyn has taught us that it’s a process, not an open-and-shut book.”

Learn more about the Cleft and Craniofacial Center.