Our story: these hands. Guest Post by Mark W. Leach

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The hands of people can tell you many things. The hands of those with Down syndrome are no different.

Beyond the insight provided from palm reading, noticing a person’s hands can tell you a bit of their story: dirt under the fingernails of someone who works in the garden; calloused palms of someone who pulls ropes on a ship; soft hands from typing on a keyboard all day in an office (like mine). For people with Down syndrome, their hands can even suggest their diagnosis pre- or post-natally–but their hands say a lot more than that.

Clinodactyly & Single palmer crease

Prenatally, one of the soft markers for Down syndrome is a shortened pinky finger, which may curve inward, termed clinodactyly. This is a “soft marker” because such a finding by ultrasound is not definitive for any chromosomal condition, but taken with others can suggest an increased likelihood for Down syndrome.

Postnatally, a common characteristic pointed out to parents is the single palmer crease. With most people, they have two major lines across their palms. With some people with Down syndrome, they can have a single line across their palms. It was explained to me that this happens possibly due to the hypotonality that most individuals with Down syndrome have, so that in the womb, as they move their hands, they open and close them in a more 90-degree way, than the curving in of others, resulting in a single crease.

Unfortunately, this characteristic has historically been termed a “simian crease” or a “simian line” due to other primates having a single line that runs across their palms. I’ve had more than one father say they wanted to punch the medical team member for associating “simian” with their newborn baby. I would hope “single palmer crease” replaces “simian crease” as “intellectual disabilities” has replaced the “r-word.”

What their hands do

But aside from a short pinky and a single crease, there is so much more that the hands of people with Down syndrome can tell us.

I had this thought this past Sunday while observing my daughter’s hands at church.

I watched

• how she used her index finger to follow along with the words in the hymnal;
• how her other hand was clasped as though she was holding a microphone, because when Juliet sings at home, she uses a karaoke machine to sing along;
• how she held the small pencils in the pews as she worked through a seek-and-find;
• how she turned the pencil around and around in her fingers in one hand; and,
• how she intertwined her fingers as she prayed.

Following along and singing the words of hymns were the result of years of inclusive schooling and work at home teaching Juliet to read. Those fine motor moves–holding a pencil and twirling it–was the result of hours and hours of occupational therapy. As Juliet sang and prayed aloud, I also thought how the first way she communicated with us was using her hands for sign language.

What do you see?

When Juliet was born, and her pediatrician talked about the single palmer crease and small pinky fingers associated with Down syndrome, that became my focus. But, now, 10 years since her birth, I notice those characteristics less. Instead, I marvel at all the things her small, soft hands can do.

I suspect that is the case whenever a diagnosis is given. A diagnosis is reductive. Before the diagnosis, your child is this being of unlimited possibilities that you spend your days dreaming about what he or she may do. After the diagnosis, your child is reduced to being just the medical condition and the possibilities seem limited.

But, given time, the fullness of your child returns. The diagnosis just becomes another part of her, but not the defining part of her, and you again marvel at all that your child can and will do.

My daughter’s hands told us about her having Down syndrome. They tell us so much more than that now.

 

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Mark W. Leach is an attorney in Louisville Kentucky who serves as the bioethics specialist for the National Center for Prenatal & Postnatal Down Syndrome Resources. This post appeared originally at his blog: http://www.downsyndromeprenataltesting.com/.

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