In our 20-week anatomy scan, my husband and I learned our baby had a cleft lip. While the scan could pick up the clean, dark line from lip to nostril, we wouldn't know if he would also have a cleft palate—a hole in the roof of his mouth—until he was born. Although we otherwise had a seemingly healthy baby boy, the news was a lot for us to take in.
When I told my mom, through tears, she asked, "But they can fix that, right?"
Her question was probably meant as much to reassure herself as it was to reassure me. And "at least it's fixable" was by far the most common response we heard when telling friends and family about the diagnosis. The response felt dismissive of the grief my husband and I felt and added a layer of guilt on top—after all, we had an otherwise healthy baby.
In those first weeks after the news, I went through some stages of grief in circular, non-linear fashion: denial (maybe the scan was wrong), anger (why did this have to happen to us?), bargaining (if only I had been taking different prenatal vitamins), depression (what if I won't be able to breastfeed?).
What helped us was discovering we weren't alone in the sense of grief and the condition. Clefts of either the lip or palate (or both combined) are a common birth defect. While statistics vary, the Centers for Disease Control and Prevention (CDC) says about 1 in 1,600 babies is born with a cleft lip and cleft palate in the U.S., while about 1 in every 2,800 is born with just a cleft lip and 1 in 1,700 is born with just a cleft palate.
Within hours of sharing the news with a few trusted friends, I was connected to a mom, Jen Bugbee, whose son, Graham, was born with a cleft five years earlier. Her long and heartfelt response was exactly what I needed to validate my grief.
"I am here to let you know that you will move on," Bugbee wrote me. "You will be the best mommy you can be for this little guy." She told me I'd eventually get to a place of acceptance. But it was still hard to wrap my head around what cleft was and why my child had developed the condition in the first place. Here's what we learned and our experience.
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 majority of clefts appear to be due to genetic or environmental factors, though there is no known cause in many cases," says Fox.
The lack of a definitive cause of a cleft can often be a point of fixation for parents, especially those carrying the child. Early on, I struggled with the guilt of potentially causing the cleft, but over time I came to accept our situation with the help of a unique team designed to surround cleft families in support.
Acceptance is a Team Effort
While the cleft diagnosis meant additional pre-natal screenings, it also brought us to our incredible care team at Oregon Health Sciences University (OHSU) Pediatric Craniofacial and Cleft Palate Program—one of nearly 200 ACPA accredited programs in North America.
"The core of ACPA's model is team care, which exists to support the complex developmental, medical, and psychological needs of each patient and family," says Adam Levy, the executive director of ACPA. There are providers from more than 35 disciplines, including pediatric nurse practitioners, surgeons, speech pathologists, audiologists, ear, nose and throat specialists, and social workers.
The first person to welcome new parents is the pediatric nurse practitioner, the nucleus at the center of the cleft care team. "In those pre-natal visits, we're focusing on trying to get families as comfortable as possible for the impending birth of their child," says Lisa Crupi, program director and nurse practitioner for the cleft team at OHSU. She fields a lot of questions about feeding and day-to-day cleft care. The goal, she says, is that before their baby arrives, parents are "feeling excited and not scared, like they've got some tools." Crupi helps build confidence not only as caregivers, but also as advocates for their child, which is a huge part of the acceptance process.
By the time Finch arrived, I had accepted the cleft as not something to "fix," but a part of my baby. When the medical team set Finch on my chest after delivery, I studied the cleft, but in the same way I studied his tiny little fingers and toes, and his fluttering little eyelids, and soft, puffy cheeks.
The Cleft Lip Surgery
Finch's recovery from the surgery was remarkably quick. It took 20 or so minutes of parental panic after sedation wore off to get him to relearn how to eat. And the next day he was smiling again and back to normal baby activities.
After a week, his external stitches were removed. We'd still have to clean the nasal stent—a clear tube stitched into his nostrils during surgery to train the nose cartilage—until it was removed after three months. Then, about three weeks later, we were able to sleep train him after the shock of surgery sent him into newborn-like sleep patterns our cleft team had rightfully warned us about. Because Finch wasn't born with a cleft palate, this would be his last surgery for a while, with less frequent cleft check-ups in the coming years.
My Son\’s Cleft Lip, Before and After
My favorite babyhood moments with Finch were the breaks from lip tape or the nasoalveolar molding, aka the NAM—both meant to train the lip and/or gums and prevent further separation before surgery—where he'd unleash his wide, gummy cleft smile. I never would've expected that I would also grieve my son losing his cleft lip—and how common that is.
Crupi says many families lament having to close the cleft. "It's not because the fear of the actual surgery," she says, "but fear of the loss of their baby as they know them. You love them for who they are, and then we change it."
It's because of this I cried the days after 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 for that very physical and sudden change than I thought. But like anything with your kid, you adjust eventually, and you love the new "normal."
Once we were through those big moments of our early cleft journey, I realized, this was not unlike any parenting journey. Perhaps amplified because the changes we experienced in diagnosis and cleft repair were abrupt and sudden. But as our kids grow up, we experience a constant, or gradual, stream of small griefs along the way. Just as you accept those changes as a part of your kid as they grow, the same goes for your cleft journey.
And like Jen Bugbee wrote me recently about her now 9-year-old's cleft-related bone graft surgery last year, "The journey continues…but I wouldn't have it any other way!"