Thursday, January 24, 2013

Blessed with good medical care

Today I met a woman at work who has a cleft palate that has never been repaired. She's 33 years old now.

She bought a raffle ticket I was selling for Chris' school, and she carefully asked me if I had a cleft palate. (She probably assumed it from my cleft lip scar? I'm not sure.) She is Chinese-American, and when she was young her parents didn't speak much English or have health insurance...so she never had it treated. In fact, she still wears an obturator (the speech appliance that tormented me and I wore until I was 15).

She has seen a few specialists--both here in Oregon and in New York--but because of her age, surgery would have just a 50 percent success rate. She also never had braces (her teeth are not nearly as crooked as mine were, though), but when she went to see an orthodontist about getting braces, he told her she'd have to stop wearing her obturator for at least 2 weeks. I know what that would be like. I took mine out every night as a child, and I could still talk...but I couldn't enunciate very well. I wouldn't have dreamed of going to school or out in public without it. She told me that children of Asian descent are more likely to develop cleft palates--her mom was 45 when she had her, and she's always wondered if that was why. (My mom had German measles when she was pregnant, likely the reason.)

Kidshealth.org says:
"Cleft lip and cleft palate defects occur in about 1 or 2 of every 1,000 babies born in the United States each year, making it one of the most common major birth defects. Clefts occur more often in children of Asian, Latino, or Native American descent."
Once again, I am feeling extremely thankful for medical technology and for my first-world comforts of living in the U.S. with access to medical care and educated and resourceful parents. We didn't have a lot of money when I was growing up, either, but we did have insurance...and I believe a lot of my medical and orthodontic care was covered by Oregon Health Sciences University (OHSU). This woman and I were laughing about how they used to call it the "Crippled Children's Center" (now called the Child Development and Rehabilitation Center). I remember my friendly doctor at the Crippled Children's Center, Robert Blakeley, who died a few years ago. I have found quite a few references to him on the Internet, including this blog written by his niece!

One of my close friends of many years, Judith, adopted a baby from China who had a cleft palate (also repaired at OHSU). When cleft lips or palates are repaired at a young age, the surgeries have high success rates. I'd like to think that some (less observant) people don't even notice my scar. As for me, I am not very observant about people's height, weight, or other physical traits, but I do notice cleft lip scars or speech impediments...just like I wonder if very slender children who wear glasses or appear slightly clumsy were preemies. (Sometimes it's all I can do to keep myself from asking the parents--not to gawk but to form a connection.) I've also been drawn to stories about children or adults with facial deformities, such as Autobiography of a Face by Lucy Greal or Wonder by R.J. Palacio.

While doing some research for this post, I found some great blogs by parents of children with cleft lips and palates, including this beautiful one featuring the writer's adopted Chinese baby who just had her cleft lip repaired.

I'm not sure what this woman will do about her cleft palate--she doesn't seem to mind wearing the obturator as much as I did. It seems that she is still assessing her options. She didn't seem angry or sad about not getting treatment at a younger age, but I wonder if she ever feels that way. It just goes to show that appearances can be deceiving...if she had not opened up to me today, I would never have known that she had a cleft palate (unlike me, she doesn't have a cleft lip, which, unrepaired, is completely noticeable!). I consider her visit a gift.

And it makes me so very grateful that my life was made whole, that I could fit in with the crowd, because these defects were repaired. And all I have to complain about is going to the dentist. Well, also that dratted cholesteatoma...which is definitely related because of all the ear infections I had as a child (all connected)...I think I will allow myself to complain about that.

So while I'm feeling sad about my friend fighting lymphoma, I'm feeling grateful and hopeful for another close friend who has finished her cancer treatment (hooray!) and also very, very glad that we live in a developed country that has excellent (although expensive and not nearly accessible enough) medical care. That's me--always looking for the silver lining, as best as I can!

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