Cleft Lip and Palate

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Cleft Lip and Palate

image by: Comprehensive Community Based Rehabilitation in Tanzania - CCBRT


We knew from ultrasound photos that our son Dylan would arrive in this world with the same birth defect as the babies we’ve all seen in those Smile Train ads, the ones featuring children with faces and stories so desperate and concerning that they compel people to donate. I never imagined having a baby with a face like that in the same way that one doesn’t foresee giving birth to a child with an unexpected birthmark or color of hair. I also never pictured growing to love a “defect” so intensely that I would feel crushed when the time came to let it go.

The minute we received Dylan’s diagnosis, the blissful passivity associated with normal pregnancy was over. Clefts can be indicators of all kinds of potential issues, like heart defects or Down syndrome, so I was immediately filled with worry about his overall health. During the next four months, we tried to win a stressful game of medical whack-a-mole by visiting specialists, drawing blood and having Costco-size quantities of cold ultrasound jelly rubbed on my expanding belly.

During this time I also worried about correcting Dylan’s appearance. There is no way to know how extreme a cleft will be until birth, so we prepared for the worst by interviewing multiple plastic surgeons in various cities, trying to find the one who could create the smallest scar and the most natural-looking lip. I also educated myself on the condition and its latest treatments, mostly through late-night Internet research sessions, which sometimes left me feeling like my baby was nestled in the pit of my stomach. I still remember reading this excerpt on a cleft palate website: “Every baby born in Uganda with a cleft is given the name Ajok, which means literally ‘cursed by God.’ Some newborns are killed or abandoned right after birth.”

We don’t live in Uganda, but a few days later, one of my friends asked me if I was going to abort my cleft baby.

Comments like these stung, but my husband and I felt emotionally prepared for our son’s unique feature thanks to college jobs we had at a camp for physically disabled kids. From our experience, we knew that even when optimal medical outcomes aren’t achieved, loved ones seem to barely notice because they see something else: a set of characteristics, an accumulation of memories, the essence of a person. They see an individual with physical differences in the glossed-over way we all see the people we spend a lot of time with.

Still, we weren’t prepared for all the logistical and physical challenges Dylan (and we) would have to overcome once he was born. When Dylan was two weeks old, we moved our family across the country for a higher-paying job (we’ve coined a saying in our house — another day, another mailbox full of medical bills). At three weeks, Dylan began treatment for his cleft. We began shuttling back and forth to endless doctor appointments. Dylan wore a medieval-looking orthodontic appliance, and his upper lip was taped together for two months. His skin grew raw from the adhesive, and scabs formed on his face.

I love how steadily love for a new baby builds. But with Dylan, I also felt something else grow: respect. I snapped at my husband, cried from exhaustion and ate in search of comfort during this stressful time. But Dylan stayed sweet, smiley and calm. The kid has grit, and he has already taught me so much about how I want to face the change-ups life throws at me.

Another wonderful surprise arose as well: I quickly fell in love with Dylan’s wide, triangular smile. As his lip repair surgery date neared, I began to feel anxiety about saying goodbye to the face he was born with. We spent so much time thinking about how to “fix” our son while I was pregnant that I never saw this coming. I spent the week before surgery photographing Dylan from every angle and in every light. I described details that I would never see again in my journal, like the little bubbles that popped out from the gap in his upper gum when he laughed, and I framed several “before” photographs to keep around our house. I want him to always know that we adored the way he looked at birth. To us, he was perfect. Once I saw him for the first time, I couldn’t imagine how I ever wanted to change anything about him.

I’m certain we did the right thing by correcting our son’s lip. This surgery, along with a second one that corrected his palate, eased his ability to breathe, eat and speak. We hope it will also eventually make a lot of the good stuff in life, like singing, telling jokes or asking someone out on a date, less difficult.

But I’ll always carry with me this ache in my heart that wonders what he would have looked like (and what his life would have been like) if we had not changed him. His lip-repair feels like a juncture in a choose-your-own-adventure-story. The journey we chose for him will be easier, but as the most interested and admiring observer of his life and of his quiet strength, I wish I could read the other version, too.

Source: Shawnee Barton, The Cleft-Lip Smile I Never Knew I’d Miss, Motherlode, The New York Times, March 9, 2014.

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Last Updated : Friday, July 24, 2020