Sunday, August 12, 2012

Little Baby Face

These things are good:
ice cream and cake
a ride on a Harley
seeing monkeys in the trees
the rain on my tongue
and the sun shining on my face

These things are a drag:
dust in my hair
holes in my shoes
no money in my pocket
and the sun shining on my face
           * Roy Lee "Rocky" Dennis
          (December 4, 1961 – October 4, 1978)

Though people asked the question with varying degrees of directness based on age, familiarity and tact, at its core it was always the same question: what's wrong with her?

For many years I let my mother answer, and then later when I grew more self-assured I would handle these inquiries myself. At first I would reply echoing the same words my mother had always used in her explanation, after all I had heard her say it a thousand times. "Michelle was born with one ear. The doctors are fixing it."

What my mother accomplished in her life is astonishing when you consider that she got pregnant at sixteen and had not even finished high school, but whether or not she ever completely understood what my birth defect really was, I don't know. She was so young. She was smart, but not book-smart, with limited reading and language skills. She wasn't able to read or pronounce even the cough syrup label that my pediatrician gave me for my cough, I doubt that she was able to understand beyond the basics of my condition. I instinctively knew this even very young, and I studied that cough syrup label until I could say all of the words without stumbling. I had this idea that understanding was important. I wanted to understand everything.

I have a clear memory from about age four or so, of being taken to a different doctor. Not small, gentle Dr. Tiger, our smiley pediatrician. I remember sitting on the crinkly paper-covered examining table in this new doctor's office. There were no toys in this waiting room. No stuffed tigers. I was worried there would be no lollipop after he was finished. What was he doing, anyway? I stayed as still as I could while in his brusque growl this new, bigger doctor asked me to gently bite down on a big Popsicle stick. I did so, feeling his warm, steady breath on my face and trying not to look at the icky fuzzy hairs on his ears. I was good at letters, and as I stared at the tie clip worn by this new scary doctor that wasn't Dr. Tiger, I wondered why it said "IMP." Imp? I remembered Maureen Rice, in my grade at school. She had a green sweater that said "MAR" in squiggly white yarn across the collar. I asked her once and she told me it was her initials. IMP. I  guessed the "P" was for "Polayes," a funny name, which I had heard my mother say. I shifted my gaze downwards as this doctor palpated my jaw and cheeks, peering past my nose down at the stick resting between my teeth. I wondered what the "I" and the "M" stood for...

...the stick should have been level, but it was slanting crazily left to right.

I looked around, but only with my eyes as the new doctor held my face still, my chin between his fingers. I was still biting the stick. Does that piece of paper on the wall say maxillo...fac..ial surg..eon? I listened intently as he talked to my mother, making angular motions around my head with his hand as he said complicated, alien-sounding words. Dr. Polayes seemed like an alien himself, with his enormous squarish bald head and smelling of something faintly antiseptic and acrid. Not that I knew the words "antiseptic" or "acrid" yet. I would learn them later, along with a plethora of other words, including the ones he was saying. Because those were the words that named my condition.

I was born with Grade 3 unilateral Microtia and Hemifacial Microsomia.

Microtia is a congenital defect of the ears, affecting about 1 in 10,000 babies. With Microtia, one or both ears are either missing entirely or are under-formed so all that's there is a protrusion of lobular tissue. Microtia is more common in boys, and more commonly it's the right ear that's affected, and often there's associated Atresia. Atresia is when there is no ear canal. Obviously I am not a boy, and it's my left ear that was affected, and there is no atresia - meaning I do have an ear canal on the left.

Microtia, though it can occur by itself, usually manifests along with other deformities, the most serious and saddest being Treacher Collins syndrome. Some of you might remember the big news story and Discovery documentary some years back about "the girl born without a face." Little Juliana Wetmore was definitely one of the most severe cases of Treacher Collins ever recorded. Treacher is a genetic defect causing under-formed bones in the face and head. Juliana was born with few bones in her face. Without eye sockets, a jaw or cheekbones she needed massive reconstructive surgeries just to stay alive. Treacher Collins is a cruel condition. There is no developmental problem in heart, lung or brain function. Only the face. Juliana is otherwise a perfectly normal child in every way.

When I was born my case of Microtia manifested along with Hemifacial Microsomia, which is a deformity in the lower face. Hemifacial Microsomia is similar to Treacher Collins syndrome, and it has just as wide a spectrum of severity.

In terms of severity, I was lucky. Dr. Polayes' Popsicle stick test could have gone worse. I was crooked, but not so malformed that strangers' heads turned on the street. Most people, at a casual glance, never even noticed anything amiss. But if you stuck around awhile you'd notice something funny. Especially when I talked and my mouth went all askew. My first grade crush, Paul, said it best one day when he stared at me for a few minutes intently, then used his fingers to tug at his cheek and said, "How come...?" He trailed off. Didn't even know what question to ask. Just "How come?"

As you can imagine, I did not talk much. When I did, I mumbled, head down, not looking at the cutest boy in class who had finally spoken to me. "I was born with one ear. The doctors are fixing it."

People like to debate each other about the effects of bullying. Kids bully the ones that look weird, gang up on the weak. Yes, that happened to me. But if I'm honest, it was the adults that made me feel worse about myself. The questions, the accusations. Once a woman stopped me to ask me if I had been in a car accident. Once I had an adult ask if my mother had taken drugs while she was pregnant with me. Kids were cruel, sure, but when you're a child getting teased by another child, that's one thing. Getting scrutinized and interrogated by an adult is quite another. In short: people suck.

The reconstructive surgery process meant a lot of time in the hospital. I have very early memories of being so afraid, so alone in the hospital, and missing my mother so much that I had nightmares. In one awful repeating nightmare -- and God alone knows where I even got this imagery to draw upon -- my mother was being held back from getting to me by big, strong soldiers, and I was being held back from getting to HER too, and in the dream I was wearing my new yellow quilted bathrobe and slippers.While they held us apart, a firing squad shot and killed her and I would wake up crying. 

There was a lot of crying, not just from missing my mom but because I didn't understand why this was only happening to me? My classmates were pretty. My little brother was cute. Everyone liked him. I was funny-looking and no one liked me.

But as I spent more time hospitalized, eventually I lost the fear and the nightmares stopped. In fact I became something of a little shit, arriving on the children's ward at that big hospital in New Haven, CT. Impatiently waiting through the boring admitting process (mom answering endless questions, and filling out forms, so many forms!) then getting to my room and setting up my books and crayons. I would go around to all the rooms meeting all the kids, offering games and activities. I knew my way around that place better than I knew my way around my school. At school I was weird and awkward and the kids would stare at my bandages. Here, everybody had bandages. At home nobody listened to me. Here when an adult asked me a question, they waited for my answer. They really wanted to know. I knew where every game and book was in the playroom, I knew when they changed the big mural on the wall to a new zoo scene, I knew how to do all of the craft activities (it was the 70s, we were the ashtray and macaroni-necklace generation). I knew where the juices were kept, and the nurses let me shuffle down the hall in my yellow robe and slippers to bring back little plastic cups of juice for myself and my friends -- I could even peel off the top without spilling. More often than not the staff had to find me first, and all my memories of having my blood drawn or my vital signs taken are not in my hospital bed, but at the playroom crafts table or down the hall where I could often be found reading stories to the smaller kids. 

Whenever Dr. Polayes was expected on the ward, there would be a big to-do, nurses rushing in to collect me and brush back my hair, and settle me back in bed so he could check the healing going on beneath my bandages. He did not say much directly to me, but he gave the nurses short, important-sounding orders in his gravelly voice. I began to understand that Dr. Polayes was an important man. Only years later did I realize that he was a leader in the field of plastic and reconstructive surgery and that I was an extremely fortunate little girl. As my respect for Dr. Polayes grew over the years, I found it humorous that he had looked so big and scary at first. He wasn't so enormous after all, not in stature. In stature he was just a regular man. But he would make an enormous impact on my life. 

I was in the hospital so much that the nurses and volunteers were people that I knew, who knew me, and we were happy to see each other again. To this day I cannot help but feel safe and cared-for whenever I find myself in a hospital bed  -- not at all nervous or worried like most people would be, but rather safe and warm. Those childhood memories are hard-wired, I never lost the warm fuzzies of the many sweet nurses, kind doctors and bubbly volunteers playing with me, reading to me, making puzzles with me, pushing my wheelchair around, brushing my long wavy hair, telling me I was pretty. To this day I see a set of scrubs coming into the room with a smile and a friendly voice saying 'How you feeling, honey?' and I still feel those warm fuzzies.

They were changing my face, but at the same time they also changed my personality. I'd been sad and quiet and lonely, but I learned how to socialize on the pediatrics ward. Sometimes there were even other kids there who looked like me! It never occurred to me that Dr. Polayes might have done that on purpose, schedule another of his Microtia kids to be there at the same time so that I would see that I wasn't the only one. The first time this happened, he personally introduced me to Laurie. I was only eight, and had this been the playground there was no way this beautiful, glamorous girl would have ever talked to squat, weird little me. He told me Laurie was thirteen and I was stunned when she tossed back her long black hair to show me her ear. Just like me! I had thought I was the only one. Dr. Polayes was a lot further along on her ear, and she told me all about it. I have a memory of Laurie lifting me up to put me back into my bed after I got up to use the bathroom; I never crossed paths with Laurie again, but I'll never forget the day that I found out I was not the only person "born with one ear, the doctors are fixing it."

The surgeries. Well, they varied from one-day quick procedures to ten-hours of invasive and dangerous work that took weeks to heal. Bone grafts, skin grafts. Doctor Polayes and his team were mining other parts of my body for the supplies to build a left ear. I have scars everywhere. One of the more painful surgeries and longest recoveries was the first time they took some rib, making an incision that would cleverly be hidden years later when my breasts grew. Pretty smart.

At the time I was unaware of what all this cost, little kids don't have a grasp of family finances. That's why they want ponies and fire trucks. But I did hear my mother talking about something called "Title 19." Later in life I researched, found that Title 19 was a Medicaid program. In Connecticut, Medicaid is administered by the Department of Social Services. It was financed by joint funds from the state and the federal government, and in order to qualify for this benefit, you had to meet strict eligibility requirements based on need. I was the fatherless offspring of an unemployed high-school dropout from a poor family. We qualified.

I would only wonder later if Dr. Polayes had supplied the rest of the funding. I mean, we had nothing. There was often hardly enough gas in the Ford Fairlane to make the drive from Waterbury to New Haven and back.

I was still having the surgeries all through high school, but once I went to college, I stopped the surgeries. The reason was threefold. 

Firstly, Dr. Polayes had retired and I was being treated by Dr. Andrew Wexler. You can look up Dr. Wexler, he is quite brilliant, but with Dr. Polayes' departure, all of the purpose seemed to depart as well. Dr. Polayes had known me longer than any teacher, and spent more actual hours with me than most of my relatives (granted, with his fingers inside my face while I was under anesthesia, but still). We had been at this for twenty years and I was just as caught up in the cause as anyone, but when he is hard to describe the feeling. I guess if you don't look too closely at the letter of the comparison, allow me to find a way to impart the spirit of the change: it was as though your favorite Mexican restaurant closed down, and in its place a burger joint moved in. Even if everyone says the burgers are wonderful, there's still no chiles rellenos anymore. What was the point? Nothing against Dr. Wexler, who, might I add, was not only a brilliant surgeon but quite charming and handsome. Oh yes, I had become a sassy little flirt, thanks to Dr. Polayes' handiwork and puberty.

Secondly, I had become more socially aware and civic-minded, my world was much larger thanks to books and teachers and knowledge. I had a friend who was born with a deadly heart defect and was in and out of the hospital (she's fine now). I thought that if I withdrew from the aid program, there would be a spot open for a person who REALLY needed the funds. It seemed frivolous of me to continue my operations for something that was not life-threatening. By that age I looked more or less normal enough that my shyness had gone, and my personality had blossomed. I had friends who didn't care whether or not my left ear was perfect. It wasn't, and it still isn't, but I asked myself: how many more surgeries before it looks ear-like enough that I'd want to wear my hair up? And with that thought came the realization that I didn't care about looking normal, as there were so many more important things in life than, well, ponytails. I mean, hey, I wore ponytails anyway. People sometimes stared and said shit, but dealing with those kinds of people is what made me who I am today. 

In high school
(photo by Brenda Fitch Schlosser, usually against my will. 

By that age, the Popsicle stick (I was no longer four years old, but it was hard to switch over to calling it a tongue depressor) was resting fairly evenly, but one of the surgeries involved getting my jaw wired shut for the summer between Junior and Senior year of high school. That was difficult, and three months of sipping pulverized meals through a straw had grown tiresome, as did the constant sight of the tracheotomy kit on my bedside table. (They never did say WHO would be the person cutting my throat to trache me if I suddenly started to choke on a not-quite blended chunk of meatball, but I kept picturing my mother panicking and trying to do it herself. Talk about nightmares). 

Well, that leads to the third of the threefold reason I stopped the surgeries. They'd wanted me back for summer of 1990, and that surgery would also have meant a wired-shut jaw. I was paying my own way through college. Nobody helped me get there, all the grants and loans I had sought out and signed up for myself, and the rest of the college funds came from four high-school years of hard-earned babysitting money. But in order to stay in college I needed to work, a lot, so that I could pay for the next semester. I told my mother to tell them that I'm finished. No more operations. We'll call this left ear "good enough." And it was. It is, has been for 20 years.

College of New Rochelle (Class of 92)
As I said, I was lucky. I was lucky that my Microtia was unilateral, that there is no atresia. I was lucky that my Hemifacial Microsomia was on the lower end of the severity spectrum. I was lucky that I qualified for Title 19, and that my operations went without complications. I was extremely lucky that Dr. Polayes was a gifted surgeon. 

Dr. Polayes died in 1999. Recently I found an article in the Yale School of Medicine newsletter saying that he was honored posthumously with a named professorship at Yale, along with his brother who was apparently a pathologist. There is a photo. It felt so strange to look at him again after all these years. God, he had seemed so big when I was four. 
 “Polayes was a master craftsman of that area,” says Persing. But he adds that his colleague, who died in 1999, was not merely skilled, he was an innovator. In addition to developing several surgical procedures, Polayes was among the first surgeons in the nation to train residents to repair facial injuries and congenital deformities like cleft palate. “He recognized there wasn’t a good training program for people who wanted to do this work,” Persing explains. “Thinking well ahead of everybody else, he developed a very extensive curriculum.” The training system Polayes developed is still in use by the American Society of Maxillofacial Surgeons. (Medicine@Yale, Jan/Feb 2009, Vol. 5, No. 1)
It is important that I make it clear that this kind of facial reconstruction is not always purely cosmetic. Sometimes it is, but with the more severe cases of Treacher Collins, Hemifacial Microsomia and Goldenhar Syndrome, the pediatric corrective surgeries are often needed to prevent more serious problems as the child grows. Just by growing, the craniofacial abnormalities can become more pronounced and severe and can lead to problems with hearing, breathing and eyesight.

If you have read this far, thank you. That's nice of you, I know that it was long. One more thing.

There is an organization called the Little Baby Face Foundation, and I'd like to tell you about them.

Little Baby Face is a charity that provides pediatric corrective surgeries for kids like me, and kids like Juliana Wetmore, and the other 1 in 10,000 who are born with facial deformities whose families cannot afford the operations. The surgeons take no payment, and for every dollar that you donate, .75 goes towards the surgery and aftercare. These days, there have been major advances in the field and it no longer takes twenty years to construct an ear. You can read all about it on their site, and trust me, it's thrilling.

Beauty is only skin deep. 

Looks aren't important. 

What's on the inside matters more than what's on the outside.

As an adult, I know all the platitudes. I learned them as a child. I would bet you my modest paycheck that I learned them years before you did. But most of you never get the chance to live the words. Knowing a thing and living it are completely different. If you could trade places with one of these kids for one day, you'd really understand the difference between knowing how deep beauty goes and praying to God from your bed in a darkened hospital room, missing your mom so much that you can't stop the tears, and asking Him why you weren't born pretty.

I've put Little Baby Face into my monthly budget and I'm donating ten bucks a month. It is not a lot, because I don't have a lot. My wealth is in the form of my friends and my regular readers, so I thought I should write my story, and in so doing, tell you all about Little Baby Face. I don't have kids of my own, but if I feel a connection to any little ones outside my circle of family and friends, it's a deep, resonating connection to these recipients of life-changing corrective surgery. I was lucky. Make someone lucky today, won't you?

(and thank you)

2012, Allston Rock City

*Note: The poem by Rocky Dennis was used in the 1985 movie of his life, starring Eric Stoltz. Rocky Dennis suffered from Craniodiaphyseal Dysplasia (also known as CDD, colloquially called lionitis). This is a rare bone disorder. There is no cure and surgery is rarely an option. Rocky's condition was a much more severe and life-threatening condition than most of the Treacher, Goldenhar and Microtia kids, but his poem just has always resonated very strongly with me, and it felt right to begin this piece with his words. Rest in peace, Rocky.

And rest in peace, Dr. Polayes.

The "I" was for Irving.

Link: Medicine@Yale article.