By Ariel Henley
When I was a child, I wanted to be two things when I grew up: an anesthesiologist and a mother. My ambition to pursue a career in the medical field faded, but my desire to be a mother did not. I imagined myself picking out baby clothes, admiring my baby’s little fingers and toes, packing lunches, walking them to school, and always attending every soccer game and dance recital. I imagined a life that was normal. But my life was anything but normal, and I knew there was a chance that my child’s life wouldn’t be either. I was born with Crouzon syndrome, a rare craniofacial disorder that causes facial disfigurements and has required too many surgeries to count. And any child I conceive will have a 50% chance of inheriting my disease.
Crouzon syndrome, which occurs in roughly one out of every 60,000 births, causes the bones in the head to fuse prematurely, before a child is finished growing. Because the bones of the skull and the face fuse early, they do not develop normally; the mid-face is underdeveloped and the eye sockets do not form correctly. Treating the visible results of this condition requires numerous surgeries to expand the skull and the mid-face, and repair facial abnormalities.
I had my first surgery to expand my skull when I was eight months old. Doctors cut my scalp from ear to ear and moved the bones in my head to where they needed to be. A few years later, they did it again. After I healed, surgeons would go back and advance my mid-face: breaking the bones in my face, shifting them forward. These procedures were performed periodically as I grew. After my skull and face were expanded, I would have additional surgeries to correct my appearance. I had bone from my hip implanted in my cheeks to give me cheekbones. The shape of my nose was corrected and my eyes were straightened — as much as they could be, anyway. The surgeries continued until I reached my early twenties.
When my boyfriend and I talk about the future, about marriage and kids, I tell him we could always adopt. It’s expensive, and deep down I truly want to make a child with the man I adore, but I know my condition complicates things. One night over dinner I told him that when the time came, we could find an egg donor, because I would want a child that resembles him. He put his fork down and looked at me in a way I had never seen before. “I just love you so much,” he told me. “I can’t imagine having a child that didn’t have your personality.”
He knows a child with my personality might also have my disease and the struggles it’s caused me, and still he’s open to it. I want it too, even though I know firsthand how difficult this disease can be. Despite the difficulties of facial disfigurement, my life has been worth living and my future child’s will be, too.
I recently stumbled on a Reddit thread about a picture of an infant with Crouzon syndrome. The girl in the image was lying on her back, wearing a floral dress that hugged her small body. I imagined her mother picking out her outfit that morning. The girl’s eyes protruded from her head in a way that is characteristic of the disease; I recognized it, because there was a time when my eyes looked like that too. There were over 700 comments on the image.
“This may sound harsh but put her out of her fucking misery,” the first comment read. “We should be euthanizing children born with these kinds of horrendous defects, and cutting them from the gene pool,” said another. “It’s easily treatable,” someone else responded, “with fire.” I scrolled through the Reddit feed, looking for someone to say something, anything to contradict this stream of hatred.
It was like viewing a diary of everyone’s secret thoughts about individuals with this disease — about people like me. Each comment was seemingly crueler than the last. “There’s a name for this? That means someone had to study this long enough to decide it needed a name. How do you look at that for more than half a second?” Other users wrote things like, “What ‘doctor’ allowed that to be born?” and “This is why Eugenics isn’t a bad idea.” To make matters worse, the post was tagged, “NSFW — Not Safe for Work” as though an image of a child with this condition was so horrific it should only be viewed with caution.
As I read through the almost seven hundred comments, I could not understand how casual the discourse and the cruelty seemed. There was talk of eugenics and sterilization, as if people with this condition were not human. As if people with this condition did not deserve to live.
I already knew what people thought about my appearance — I could tell by the way people stared and by the way children always seemed to point and whisper whenever I walked by. But by talking about “allowing” a child with Crouzons to be born, these hateful strangers were challenging not only my looks and my worth, but my right to make decisions about my body and my family.
People with Crouzon Syndrome have a 50% chance of passing on the disease to their children. Even if a child didn’t inherit the disease, they would still be a carrier. Reading the thread made me realize that many people would find my desire to have a child selfish, even cruel. And worse, it reminded me that if I do have a child with Crouzon, they’ll be born into a world that says spiteful, disgusting things behind their back, or to their face. Still, I believe the only thing that needs to be eliminated from our society is the repulsive sense of entitlement bullies feel when they’re sitting anonymously behind a computer screen.
As a person born with Crouzon syndrome, it has taken me years to value the person I am — not because I didn’t like myself, but because the world around me told me I shouldn’t like myself. Though it took dozens of reconstructive surgeries, both for my appearance and to keep me alive, it was the years of subhuman treatment every time I left my house that made bearing the weight of the condition a challenge. Often, in an effort to comfort me, my family and friends would deny the existence of these prejudices. “Those kids are just staring, because they’re admiring how beautiful you are,” they would tell me. But I knew better.
Growing up, I compartmentalized my experiences. There were two versions of me: my hospital self and my healthy self. During surgeries and recovery periods, I gave myself permission to really be in those experiences, but as soon as they were over, I did my best to pretend they never happened. Once I recovered, I would go back to school and to my friends, play sports, join school club — just generally try to do the same things as other people my age. I had the idea that if I pretended to be the same as everyone else, soon enough people would start to believe it. And most of the time, they did. It got easier as I got older. The more surgery I had, the less noticeable my physical differences became.
Within my family, my condition and the fact that I had surgery was just accepted as normal. From the beginning, the doctors told my parents: Treat her like she’s sick, and she’ll act sick. I don’t know if this is true for everyone, but it worked for me; when I wasn’t actively recovering from surgery, I never felt like a sick person. In fact, I think this mentality forced me to grow up with a sense of strength. Yes, I had to face more physically challenging experiences than most people my age, but I didn’t feel diminished by them — I felt stronger for surviving them. I did what I had to do: I had surgery, I recovered, and then I went on with my life.
But not everyone subscribes to that belief. For a lot of the world, people like me are sick all the time. People with Crouzon syndrome and other conditions that result in disfigurements often have to deal with discrimination in every area of their lives. I am judged by my appearance when I apply for jobs. I am judged when I go to dinner with my boyfriend. I am judged every time I walk down the street. Still, there has never been a time when I’ve regretted my life or wished my mother had an abortion. Sure, there were years that were easier than others, procedures that were easier than others, but I’m surrounded by family and friends who value me exactly as I am, and that has made all the difference.
Growing up with Crouzon Syndrome has shaped everything about me. It has made me more compassionate, more aware of the people around me, more able to practice and appreciate kindness. It has taught me to disregard superficial standards, and instead value people — all people. I would not be who I am today without my experiences, and given the option to live a life without Crouzon Syndrome, I wouldn’t do it. Having this condition has allowed me to rely on my personality to make friends and form relationships — and to surround myself with people who value that personality. I wouldn’t want to spend time with the kind of people who can only care about someone with perfectly symmetrical eyes.
When I don’t think about the surgeries I went through as a kid, I tend to forget that I have Crouzon Syndrome at all. I have a job, friends, a great family, and a wonderful boyfriend. I love my life — my, for the most part, completely ordinary life. I’ve had hardship — we’ve all had hardships. But just because one person’s trials in life do not match your own, does not mean that they are not worthy of life.
Maybe one day I’ll change my mind. Perhaps by the time I’m ready to start a family, I’ll decide that having biological children is not the path that was meant for me, but that is my prerogative. My desire to one day bring a child into the world isn’t the problem. Society’s desire to judge me for it is. But there’s one thing I can promise my future child, whether they’re biological or not: a supportive, understanding, unconditionally loving mother. And with that, we should both be able to make it through, no matter what society throws at us.
