Daughter’s Cleft Lip Makes Dad Question What is “Normal”

Editor’s Note: A cleft lip, with or without cleft palate, is the fourth most common birth defect in the United States, affecting one in 700 babies a year. In this guest post, Roberto Santiago writes about his inner turmoil reckoning his daughter’s quest to look “normal.”

It’s a weird thing when your 4-year-old gets a nose job.

Before you get upset, I’m not a pageant dad. This was a medically necessary nose job related to my daughter, Lou, being born with a cleft lip and palate.

Since the day she was born, our surgeon has repeated the phrase “normal by five” several hundred times. That phrase makes me uneasy. In my years working with people with disabilities, mostly as a sign language interpreter, I’ve come to distrust the term “normal.”

To many in disability and mental health communities, the word is oppressive. “Normal” creates a caste where a non-disabled person falsely assumes a superior position. The disabled person feels expected to aspire to normality, a state they may not be able to, or may be disinterested in reaching. “Normal” gives a statistical concept an inappropriate emotional connotation. I don’t want that burden placed on my little girl.

For Lou, we knew being “normal” would require three or four surgeries on her cleft lip and palate before she entered kindergarten. The latest one would be a lengthening of the columna, the external fleshy bit of the nose that divides the nostrils that her cleft caused to be very short and unable to grow. This gave her a vaguely cat-like look with nostrils more like little slits than round holes. It also caused folds inside the nostrils to easily clog.

Her recovery from that surgery took three weeks, two more than expected. She experienced discomfort rather than much outright pain during that time. The exception came when we had to clean the constant excretions and dried goop from her recovering nose. And at those times, the pain was not limited to her face.

“I hate how my nose looks!” she screamed. “I hate how it looks when it’s bloody. It looks terrible. I hate it. It looks gross and yucky and ugly. I wish I didn’t have a nose. I just look at my face and I wish I didn’t have any nose. Until today I just hate having a nose.”

This was my biggest fear before the surgery. I feared she’d hate her new look and want her old cat nose back.

My wife tried to reason with her, but Lou just kept yelling. Finally, I showed her a picture of Voldemort from the Harry Potter movies.

“See honey, this guy doesn’t have a nose. Is that what you want?” I asked.

“Oh. My. God,” she said.

She finally stopped protesting.

Still, the goop, the discomfort, the blood – none of that is what lingers with me. It’s how she looks.

When she was a baby we would speculate on who she would favor when she got older. She has my coloring, and she has her grandmother’s eyes, and we knew that her nose would be her own. It wouldn’t look like either of us because it was going to be created on an operating table. We knew we’d spend five years with one version of her face, and then it would change.

She looks like a different kid today. But she also still looks the same. This isn’t a Jennifer Grey situation here. The observation I keep coming back to is the one that makes me feel guilty for thinking it. She now looks “normal.”

Sure, the goal of the procedure was normal function, but the side effect was a “normal” look. I know I shouldn’t be using “normal.” I should use “typical” or some other term. But “normal” is the one that keeps coming to mind.

And I feel guilty about that.

I feel guilty about how relieved I am.

I feel guilty because the outcome for my daughter isn’t the outcome every cleft kid has.

We grow up being told looks don’t matter even while our peer interactions and media messages impress upon us that they do. Maybe my guilt is really just disappointment in myself. Disappointment that I’m shallow, that my daughter’s looks hold importance to me.

Lou will likely always have visible scars from her cleft lip surgeries. But each time she goes in she ends up looking more like a typical kid, and less like the baby we nicknamed Zoidberg after the cartoon lobster-man on Futurama. I’m happy to think she’ll be able to avoid being emotionally destroyed by her peers at school. I’m happy her social life won’t be hindered by deformity. (She’ll only have to face the usual horrible social pressures! Yay!)

It shouldn’t matter how she looks, especially not to me. That’s the message. That’s the ideal. But it does matter because I know how the world really works. So I’m conflicted over how her new face makes me feel. Because it’s a weird thing when your 4-year-old gets a nose job.

ABOUT THE AUTHOR

Roberto Santiago could never decide on a job so he endeavors to have all of them. He is a writer, teacher, sign language interpreter, rugby referee and stay-at-home dad. He writes about the intersections of family, sports and culture at An Interdisciplinary Life.