Jessica Poirier was upset but not surprised when an ultrasound showed her unborn son had a cleft lip. She’d been the first in her family born with one, and two of her four siblings had the condition, too.
“I knew that my mom had been through it three times over,” she said, “so I knew that I wasn’t alone in having to navigate that.”
She did worry how her baby would look, though, and about conditions that occur more often in babies with a cleft lip. Doctors said her son might also have a cleft palate, as well as duodenal atresia, which is a narrow or blocked small intestine.
“Nobody could give an answer,” said Jessica, a 27-year-old full-time mom with a tousled strawberry-blonde bob and an outgoing manner. “So from then on I was just terrified the whole time until he came.”
From routine ultrasound to specialty care
A cleft happens when tissues of the lips and/or mouth don’t fully fuse, leaving a gap. Clefts can form in the lips, palate or both, and on one side of the mouth or both. Some clefts are so small they’re hard to see. Others reach from the lip or palate into the nose.
This National Cleft and Craniofacial Awareness and Prevention Month, learn about OHSU Doernbecher's Craniofacial Disorders and Cleft Lip/Palate Clinic
About 1 in 1,050 babies in the United States is born with a cleft lip each year, with or without cleft palate, the Centers for Disease Control and Prevention reports. About 1 in 1,600 is born with a cleft palate. Scientists don’t know the cause but suspect a mix of genes and other factors.
Jessica learned of her son’s cleft in a routine ultrasound called an anatomy scan, done around 20 weeks of pregnancy. She drove about 45 minutes to The Dalles for prenatal care from the home she shares with her fiancé and their family in Grass Valley, a community of fewer than 200 people.
After the scan, her doctor referred her to Oregon Health & Science University. Babies with cleft lip and palate do best when they get care starting soon after birth, and when they see specialists who can treat related dental, feeding, speaking and hearing issues. OHSU can provide all of that.
Jessica met with an OHSU geneticist and with the perinatology team, which specializes in high-risk pregnancy. She also met the craniofacial and cleft team at OHSU Doernbecher Children’s Hospital led by Lori K. Howell, M.D., FAAP, a plastic and reconstructive surgeon.
The team has experts in 16 specialties. “Many of them have been here 15-plus years, which is a true testament to the dedication of our team,” said Howell, the program’s medical director. “They're so selfless about it and so truly passionate about what they're doing.”
18-year treatment plan
Jessica's baby, August, was born at OHSU Hospital on a spring day in 2022. She heard the labor and delivery team say, “He's totally fine. He just has a cleft lip and palate.”
“That,” she said, “was the biggest relief I’ve ever felt.”
Within two weeks, she was back at OHSU with August and her sister, Grace Poirier, to map her son’s 18-year care plan with the cleft team.
The appointment took a twist for Grace, also born with a cleft lip.
“I told Dr. Howell, ‘All I gotta say is, I want his end results to look like mine and not hers,’” said Jessica, whose upper lip shows no sign of her childhood surgery.
“We were all wearing masks, and Dr. Howell goes over to my sister and pulls down her mask and was like, ‘Mm-mm, come to my adult clinic. We’re going to fix this.’”
August started with a treatment called nasoalveolar molding at about a month old. He wore a custom device for about a month and a half to improve the position of his lip and jaw, and to adjust the shape of his nose.
The care team talked with the family often about what to expect with August’s lip repair, Howell said. Conversations revolved around questions like, “How long will it take? What will the recovery be? Can they eat normally again? Can they do this? Can they do that? What’s their pain level going to be?” she said.
Howell said the team repeats the conversations “because it's a lot of information coming at a parent or parents at that time, when they’re already completely and totally sleep-deprived.”
One team, childhood to adulthood
Howell repaired August’s cleft lip when he was 3 months old. The two- to three-hour surgery is one of the things she enjoys most about her work.
“They leave and their lip looks just like a regular lip,” she said. "It is profoundly moving to everybody that’s in that operating room."
Grace also had Howell repair her lip within two months of August’s surgery.
“It was a fun journey for us to both go through,” Grace said. “I know ‘fun’ is kind of a weird word, but I understood the pain of his recovery. I feel like we’re kind of bonded.”
Next came August’s cleft palate repair, right after his first birthday. The team put tubes in his ears to prevent infection and improve hearing, because the palate helps control fluid and air in the ears.
“They told me that his hearing was like he was underwater beforehand,” his mother said. He also had speech therapy because the palate is used in speaking.
August, now 2, will need more surgery between ages 8 and 12 to fill a notch in his gum called an alveolar cleft. Then he’ll need braces. He might have nose or jaw surgery in his late teens to improve function or appearance.
Through it all, he’ll have the same team. “They’re going to follow him forever,” Jessica said.
That’s another reason the OHSU team stands out, Howell said. The team cares for patients from childhood through adulthood.
“I think that’s where cleft care has come a long way over the last 20, 30 years,” she said. “Really recognizing that these patients need to be cared for by people who’ve focused their careers on cleft care, rather than it being a smaller component of one’s practice that is not in an established, multidisciplinary cleft setting.”
When patients see cleft specialists, Howell said, “the better their outcomes will be.”
'Seeing him thrive'
August is a typical toddler. He played with his 5-year-old brother, Cash, at home while his mom talked on the phone. He showed his aunt a photo of a baby, ate applesauce from a pouch and peeked at his mother’s phone to see who she was talking to.
On a recent Monday at OHSU, August followed four appointments by settling into a quiet corner with a stuffed elephant and toy cars. Soon, though, he had pulled off his tiny cowboy boots to scamper around in his socks.
When Howell came to say hello, she picked him up and swung him around. His big brown eyes beamed.
Jessica appreciates that the team groups appointments so she doesn’t have to make the three-hour drive to Portland as often. OHSU has even provided gas money.
But the best part? “Seeing him thrive,” she said.
The family recently welcomed a new baby boy. He doesn’t have a cleft in his lip or palate, but if he did, Jessica said, she knows the OHSU cleft team would be there to support her.
“You can always call them and be like, ‘OK, what are we going to do next?’” she said. “And that’s very reassuring.”