Here is What I Learned When My Baby Was Born With a Cleft Lip

When an ultrasound showed that my son will be born with a cleft lip, I was devastated—and then felt guilty for feeling that way. But, as perplexing as the causes and repair of cleft lip can be, I learned that all of my emotions were well.

My husband and I discovered our baby had a cleft lip during our 20-week anatomy check. We wouldn’t know if he had a cleft palate—a defect in the roof of his mouth—until he was born, even though the scan picked up the clean, dark line from lip to nostril. Despite the fact that we had a seemingly healthy baby boy, the news was difficult for us to process.

“But they can fix that, right?” my mother asked through tears when I told her.

Her query was most likely intended to reassure herself as much as it was to reassure me. And when we told friends and family about the diagnosis, the most popular answer was “at least it’s fixable.” The response seemed dismissive of my husband and me’s sadness, and it added a layer of shame to the mix—after all, we had a healthy infant.

I went through several stages of grief in a circular, non-linear way in the weeks following the news: skepticism (maybe the scan was wrong), indignation (why did this have to happen to us? ), bargaining (if only I had been taking different prenatal vitamins), and sadness (what if I won’t be able to breastfeed?).

What helped us was realizing that we weren’t alone in our sorrow and condition. Clefts of the lip or palate (or both) are a typical congenital defect. Although figures vary, the Centers for Disease Control and Prevention (CDC) estimates that one in every 1,600 babies in the United States is born with a cleft lip and palate, with one in every 2,800 having just a cleft lip and one in every 1,700 having just a cleft palate.

I was related to a mother, Jen Bugbee, whose son, Graham, was born with a cleft five years earlier, within hours of sharing the news with a few trusted friends. Her lengthy and heartfelt response provided the validation I needed for my grief.

Bugbee wrote me, “I am here to let you know that you can move on.” “For this little boy, you’ll be the best mommy you can be.” She assured me that I would finally come to terms with my situation. But it was always difficult for me to grasp the concept of cleft and why my child had formed it in the first place. Here’s what we discovered and what we saw.

What is a Cleft Lip and a Cleft Palate?

A cleft lip is a separation of the two sides of the upper lip. It “often includes the bones of the upper jaw and/or upper gum,” says Lynn Fox, M.A., M.Ed., CCC-SLP, president of American Cleft Palate-Craniofacial Association (ACPA). A cleft palate is an opening in the roof of the mouth because the two sides of the palate did not join together.

What Causes Cleft Lip?

“The vast majority of clefts tend to be caused by genetic or environmental causes, but in many cases there is no clear cause,” Fox says.

The lack of a clear cause for a cleft can be a source of anxiety for parents, particularly those who are carrying the infant. I struggled with the shame of possibly causing the cleft at first, but with the aid of a special team dedicated to cleft families, I eventually accepted our condition.

Acceptance is a Team Effort

Although the cleft diagnosis meant more pre-natal screenings, it also led us to the Pediatric Craniofacial and Cleft Palate Program at Oregon Health Sciences University (OHSU), which is one of approximately 200 ACPA-accredited programs in North America.

“At the heart of ACPA’s model is team care, which works to serve each patient and family’s diverse developmental, medical, and psychological needs,” says ACPA executive director Adam Levy. Pediatric nurse practitioners, physicians, speech pathologists, audiologists, ear, nose, and throat specialists, and social workers are among the more than 35 professionals.

The pediatric nurse practitioner, who serves as the nucleus of the cleft treatment team, is the first to greet new parents. “We aim to get families as ready as possible with the imminent birth of their child during those pre-natal visits,” says Lisa Crupi, program director and nurse practitioner for the cleft team at OHSU. She gets a lot of questions about feeding and cleft treatment on a daily basis. The target, she says, is for parents to feel “excited and not afraid, like they have some tools” before their baby arrives. Crupi helps parents gain respect as caregivers and advocates for their children, which is an important part of the acceptance process.

By the time Finch arrived, I had recognized the cleft as a natural part of my daughter, rather than something to “fix.” I studied the cleft when the medical team placed Finch on my chest after birth, just as I did his tiny little fingers and toes, fluttering little eyelids, and smooth, puffy cheeks.

The Cleft Lip Surgery

Finch made a remarkable recovery from his surgery. After the sedation wore off, it took about 20 minutes of parental panic to get him to relearn how to feed. He was laughing again the next day, and he was back to his usual baby activities.

His external stitches were removed after a week. We’d have to keep cleaning his nasal stent—a clear tube stitched into his nostrils during surgery to train the cartilage in his nose—until it was removed three months later. After the trauma of surgery sent him into newborn-like sleep habits, which our cleft team had rightly warned us about, we were able to sleep train him about three weeks later. Finch didn’t have a cleft palate because he wasn’t born with it, but this will be his last surgery for a while, with less cleft check-ups in the coming years.

My Son’s Cleft Lip, Before and After

The breaks from lip tape or the nasoalveolar molding, aka the NAM—both intended to train the lip and/or gums and prevent further separation before surgery—were my favorite babyhood moments with Finch, where he’d unleash his big, gummy cleft grin. I never expected to be saddened by my son’s cleft lip, particularly given how common it is.

Many families, according to Crupi, regret having to close the cleft. “”It’s not because they’re afraid of the surgery,” she explains, “but because they’re afraid of losing their baby as they know them.” We adjust them because you love them for who they are.”

It was for this reason that I cried in the days following Finch’s surgery when he was 5 months old (surgery is recommended within the first 12 months or earlier for cleft lip and the first 18 months or earlier for cleft palate). I was less prepared than I expected for such a drastic physical transition. But, as with everything with your child, you adapt and enjoy the new “normal.”

After we got through those difficult times in our early cleft journey, I realized it was no different than any other parenting experience. Perhaps because the advances we saw in diagnosis and cleft repair were so drastic and unexpected. However, as our children grow older, we face a steady stream of minor disappointments. Accepting changes as a part of your child’s growth is similar to accepting changes as a part of your own cleft journey.

Jen Bugbee recently wrote to me about her now-9-year-cleft-related old’s bone graft operation last year “The adventure continues…

But there’s no way I’d get it any other way!”