The Smile Train and Me

Amy Blanchard

I. INTRODUCTION

There are no pictures of me as a newborn.

I may as well tell you up front: I was born with a cleft lip, which means that two flaps of skin and tissue under my nose that were supposed to join together in utero did not do so. My cleft is just on one side, my right side. It's a tiny defect, and I have a scar that runs less than an inch between the bottom of my lip and into my nose. Really, it's a small thing. People tell me they can't even see the scar. What they may notice, but are generally too polite to mention, is that the nostrils of my rather fleshy nose are of two different sizes. This is related to the cleft, and  and is obvious in photographs, and when I look in the mirror. I like to think that my nasal asymmetry is not that noticeable in real life. People say it is not, but I don’t know if they are telling me the truth.

II. CAUSES

No one knows exactly what causes clefts, although genetics may have a role to play. My grandfather may have had a cleft. He had a scar under his nose that was not all that different from mine. Family lore held that he had gotten bitten by a dog there when he was five. If he did have a cleft repair, he had a fine one for the early 1900s.

Lack of folic acid in an expectant mother's diet has been implicated as well. Pregnant women now take folic acid routinely to prevent spina bifida, and I’ve heard there has been an associated decrease in facial clefts as well. I took prenatal vitamins religiously when I was expecting my son, and he got off with only a cleft uvula. He was lucky that way.

My understanding was that the fusion I missed takes place at about four to seven weeks of gestation. As a teen, I wondered if my lip malformation could be associated with a bad shock to my mother, such as President Kennedy’s assassination. That's the kind of thing my great grandparents, or even my grandparents, might have believed. Modern medicine does not hold to that kind of theory, and the dates, although close, don't quite add up. I’ve also wondered about my mother's possible radiation exposure since that’s also a risk factor, but as far as I know, that is a dead end as well.

I read somewhere that babies in the womb inadvertently make their own cleft lips worse by poking their tongues through them. They can’t help it; there is no one to tell them not to. It must be like picking a scab.

III. EARLY LIFE

In industrialized nations, cleft repairs may now be performed soon after a baby’s birth.

But back when I was a newborn, in the early 1960s, babies had to weigh at least ten pounds before surgery. I was born a bit scrawny at five pounds, thirteen ounces. In my unrepaired state, I had to be fed every three hours using an eyedropper-like device, drop by tiny drop. This routine must have been tedious for everyone involved.

My parents had me baptized the day before surgery just in case I didn't survive the procedure. No one has ever told me that anyone in my family had a problem with my having a cleft lip. "You were much loved and much held," my mother has reassured me. I'm not so sure aboutthis. My grandmother, my father's mother, never taught me how to crochet or play canasta, as she taught my older sister. I can't prove that either of these omissions were because of my lip, but they sure felt that way to me.

IV. PLASTIC SURGERY

Every year, I went to visit my plastic surgeon. He was reportedly the first person to meet me after I was born, despite the fact that I came along at around three in the morning. My surgeon was well-known as an innovator in his field; he was among those who pioneered what came to be known as the Z-plasty technique. To him I owe my barely noticeable lip repair.

My annual visits to my plastic surgeon’s office always followed the same pattern. He would peer at my face and nose, occasionally take photographs, and remind me that when I was sixteen, I would have something called a "rhinoplasty" that would fix my nostrils and give me what my family referred to as a "new nose." I couldn't wait to turn sixteen. But, as it turned out, the rhinoplasty, which involved breaking my nose and resetting it, was more complicated and painful than I had been led to believe. I emerged with a battered face and my eyes swollen shut. I had the surgery during summer vacation, and healing took up every minute. What’s worse, the surgery didn’t change my life in the way I thought it would. My new nose, which was improved but still fleshy and asymmetrical, didn’t make me popular or land me a boyfriend.

I had hope before the surgery, but afterwards I had no hope at all.

Years later, a man who identified himself as a plastic surgeon approached me at my place of public-facing employment to admire my repairs. Maybe the average person wouldn’t have noticed, but he wanted me to know that he did. He also wanted to know who performed my surgeries. I was taken aback, but I stammered out the name of my doctor. "A good man," the self-identified plastic surgeon declared.

All told, I had four surgeries to repair my cleft and associated issues. You could say I got off easy; many people with facial differences have more surgeries than that. The last surgery, which I had when I was twenty-two and paid for with my earnings from my first job out of college, was particularly disastrous. As is usual for nasal surgery, I was awake during the procedure, which again involved breaking my nose. This time, a Greek chorus of medical students was in attendance. When the surgery was over, I wrote a complaint letter about the residents to my plastic surgeon, which I have to this day. I wrote:

One of the first steps of the surgery was the cleaning out of the inside of my nose. It was not a dignified procedure, but it would have been bearable had I not heard whispers, nervous titters, and even a disgusted “oooh” behind me. Apparently, something was taken out of my nose that the students found amusing or disgusting. At first, I was embarrassed, then I became angry. They must have forgotten that I could hear them.

After that experience, I swore that I would live with my nose “as is” and never have surgery again. There have been times when I’ve reconsidered this vow, but when I remember the last time, I know why I made the decision in the first place.

V. ABOUT SMILE TRAIN

By sharing these painful memories, I hope I have established myself as someone who knows what it is like to have a facial difference. All these things bring me to Smile Train, an international charity that provides free cleft repair surgery to children in developing nations. It’s a big, well-established non-governmental organization (NGO) that advertises heavily in print andon cable TV. The charity’s appeals have even shown up in my Facebook feed. Smile Train’s solicitations feature pictures of babies and children with big eyes, sometimes filled with tears, and unrepaired cleft lips. I must admit that I didn’t know what an unrepaired cleft lip looked like (outside of medical textbook line drawings) before Smile Train launched its media presence.

I have a visceral reaction to these photos. Cleft-affected little ones should not be paraded around like that in their unrepaired state. People are quick to mock those they see as “different,” and not everyone who sees a Smile Train photograph in a magazine or on a late-night infomercial is moved to compassion. Some things just don’t need to be seen. Pictures of people with facial differences have even been known to show up on “ugly people” websites, where viewers can vote on which unattractive candidate is “ugliest.” Why take that risk with one’s own child?

It is not surprising that Smile Train’s decision to display photographs of its beneficiaries before their surgeries is based upon fundraising concerns. In the FAQ on its website, in response to the question, “Why doesn’t Smile Train always show after surgery photos in ads?” The organization answers, “We test the results of all our advertising and our research and analysis demonstrates that advertisements that include only before photos significantly increase the amount of money we raise to help these children” (emphasis added). But, I would ask, at what cost? Smile Train may do good work in repairing clefts of children in developing nations, but it does so by exposing them to cheap pity and even derision. It’s exploitative.

One more thing: Smile Train’s marketing strategy gives the false impression that their clients have attained happy endings to their cleft-affected plights after only one procedure. Post-surgery, the narrative goes, the children are as they were meant to be, or, to put it another way, just like everyone else. I hope that if my story has proven anything, it is that the medical and psychological needs of people with facial differences do not resolve themselves after one procedure.

VI. NOT ABOUT SMILE TRAIN

Of course, this rant isn’t really about the Smile Train. How can anyone argue against such an outstanding organization, one that does such good work, so inexpensively, all around the world? The Charity Navigator website gives Smile Train a 100% trustworthy rating for financial accountability. For a mere $250 per procedure, the medical professionals affiliated with this group can save a baby or child with a disfiguring birth defect from a lifetime of poor breathing, unintelligible speech, malnutrition, and other ills. This NGO gives children a chance to be on equal footing with their peers and not have to hide away for the rest of their lives. It can’t spare them from the stigma of a cleft scar or associated nasal defects, but it can make things better.

When I first saw a Smile Train ad, my impulse was to turn away. Now my relationship with the pictures is more complex. They don’t inspire me to donate to the organization; instead, they make me want to protect these exploited minors from the prying eyes of media consumers in first-world nations. I wonder how the children will remember their Smile Train experience, and if they’ll be as grateful as the fundraisers claim.

People with facial differences rarely tell their own stories. I think that’s because the memories are so often painful and embarrassing.

This observation brings me back to my opening statement: there are no photographs of me as a newborn. My parents presumably did not want me to think of myself in a “before” condition. However, I don’t know if this was a choice my parents made, or if taking pictures of cleft-affected babies simply was not done in the year of my birth.  I am sure I’ve mentioned the lack of photographs to my mother, but I don’t remember her reply. She probably brushed the matter off. Were my parents embarrassed by me, or shielding me? I don’t know the answer to that question and probably never will.