July is National Cleft & Craniofacial Awareness and Prevention Month
They whisked the baby away. It was after 11 o'clock on a Friday night. The mother wondered what was wrong. Did the infant die? Why weren't they telling her anything?
"Where's my baby?"
Temperature taken. Blood pressure checked. Meals delivered. But no news of her baby.
Why won't anyone tell me about my baby? Is it a boy or girl? Did my baby die?
Sunday arrived and so did the phone call. From the doctor. That's how they delivered bad news those days.
"Your daughter was born with a cleft palate," he said, sounding as if he was pronouncing a death sentence.
"What's that?" the mother asked.
"There's a hole in the roof of the mouth. Makes eating, breathing, living difficult. There's a doctor that can fix it. But he's black."
"I don't care what color he is, as long as he can fix my baby!"
The parents quickly called a priest to have the baby baptized at the hospital. They were afraid the baby was going to die.
That was fifty-seven years ago. That baby was me.
Life goes on.
I had the first surgery by a Doctor Maxi. I was too young to know him, but I wanted to thank him. After that, there were more surgeries, doctor visits and trips to Madison where there was a team to help me with my cleft palate and all the other issues that came with it - speech problems, hearing, dental, and social.
I hated it all. I felt stupid. I felt as if I was a defect. I felt sad. I felt as if I was the only one with this problem. And, when I had surgery at age six, I felt lonely because my family couldn't visit me (those were the days of long hospital stays).
At age 15 I graduated from going to Madison and from the team. I graduated from high school at 17, went to college, worked, went to graduate school, married, and had four daughters.
Life goes on.
On and off through life I noticed people with scars over their lips. I never said anything. I just felt a silent solidarity with them. They wouldn't know about my cleft because it was a cleft palate. There were no visible scars but plenty of emotional.
I tried pushing it all away. I tried to pretend it never happened. That was an early part of my life. It has nothing to do with me now. Today.
About 18 years ago, a good friend gave birth to her third child, a boy, named Evan. He was born with a bilateral cleft lip and palate. It all came back. (Listen to his story on this month's podcast).
I started looking at different websites and organizations that helped people with cleft palates/cleft lips and other craniofacial issues. Just a few months ago I learned about National Cleft & Craniofacial Awareness and Prevention Month. That's when I decided I'd dig deeper into my past to inspire and give hope to those facing a future with any craniofacial issue (or any insecurity for that matter).
Life goes on.
The first thing I did was search for famous fashion models who had clefts. I could not find any. There were some celebrities listed on various websites, but there was no way to confirm those. I did find an article - Sarah's Smile about Sarah Wun, an actress. It tells about her experience with a photographer. It was so intriguing. I continued searching for more information about Sarah. She has an IMDb page. She created her own short film- Best Smile in the World. I thought you would like to learn a little more about her. Since Sarah lives in Hong Kong, she agreed to an email interview.
1. Did you grow up in Canada? Were there celebrities with clefts? How about models?
Yes, I grew up in Brampton, Ontario, Canada (near Toronto). I went to the Hospital for Sick Children for all my cleft needs!
I didn’t know of ANY celebrities with cleft growing up. I remember ONE day seeing Carmit (Bachar) from the Pussycat Dolls and I was pretty positive she had a cleft, but I wasn’t completely sure. Then there was Joaquin Phoenix, but there was never confirmation of him having a cleft, so I felt like there really was zero representation for me growing up.
2. What are ways we can help people with maxillofacial differences become more confident?
Hard question. I mean, for me, it’s being there, sharing stories, letting them know we know how they feel, showing them positive, confident, successful role models. For me, it’s also putting myself in a vulnerable situation, like with my film, to show that I’m comfortable doing that. We are our own harshest critics, so as soon as we leave ourselves alone, life gets MUCH easier and much better. Confidence is a hard one. I was VERY shy as a kid. Drama helped a lot, but really it had to come from within. Find your THING. Don’t think that your cleft/facial difference defines you because it doesn’t — it just makes you someone with an extra interesting story :)
3. What are polite ways of responding to rude comments about our faces?
I’ve always just responded matter-of-factly. I usually say “it’s a cleft lip” and that’s that, really. I don’t think there’s any other way to respond than “I was born with a facial difference and that’s why I look/sound this way” or something. When I look unfazed by it and just say calmly “yea, it’s called a cleft” etc., people either shut down and stop talking or apologize. So it’s all good. Mind you, don’t get me wrong… I definitely hold onto it and cry about it later, because I’m a sensitive human being! But yea, I’d keep it calm and factual.
4. I recall my cleft team as being a doctor, speech pathologist, ENT, social worker, and dentist. At the time the social worker was not really a therapist but she did want to make sure I was "adjusting." Do you think a therapist or counsellor should be on the team?
I had the same people on my cleft team. I also had a social worker and I LOVED her. I felt I didn’t see her enough and I would have LOVED to have access to her more often. I think therapy is healing and incredibly important and absolutely should be on the team. Health is physical and mental, so it should be treated as such, because the mental toll of a cleft (especially those years with the big surgeries and having to go to school and everything….whew….those would probably have been a lot easier with someone to talk to.)
Thank you, Sarah Wun, and good luck with all your projects!
When I began writing this blog there were multiple long-term goals I hope to set into motion.
1. I'd like to see fashion models and celebrities with cleft lips. I'd like them to talk about it. I'd like modeling agencies and Hollywood to actively seek out models and actors with cleft lips and/or other craniofacial issues.
2. I'd like to see less photo-shopped images and more real people with all sorts of flaws.
3. I'd like to see less stigma and guilt passed on to mothers who have had babies with cleft palates.
4. I'd like to see greater support for those organizations that go into countries with less resources to do cleft repair. See below some of the organizations.
5. I'd like schools to be more specific in their anti-bullying programs. Teach children that there will be all sorts of physical differences and not to question or tease others who look different from them.
6. Get people with craniofacial issues connected. One way is through camps. FACES-National Craniofacial Association has a listing of different camps and retreats. Click here. Facebook has several different groups you can link into.
7. I'd like to see the spread of more kindness. (That's a whole other article!)
Thank you for reading. Please share!