We shouldn’t have to justify children with Down syndrome being born

Photo credit: Sarah Torretta Klock, NY Times

Photo credit: Sarah Torretta Klock, NY Times

Rachel Adams, the author of Raising Henry, has a piece in the new issue of American Journal of Medical Genetics, Part A. You should read it and its lines should be inscribed in offices around the world. 

Adams is a professor of English and American Studies at Columbia University. She’s also a mom, whose son Henry has Down syndrome. She writes of her experience in her book.

Her most recent piece is in the American Journal of Medical Genetics, Part A. As I read it, so many lines jumped out at me. Here are just a few:

  • Down syndrome is increasingly seen as a preventable mistake, an error of judgment or a case of science gone awry.
  • [] I object to the bias and misinformation that surrounds prenatal testing, and to the assumption that a positive diagnosis should always lead to a discussion about termination.
  • [C]hildren born with Down syndrome in this new era are inevitably seen as the result of highly charged decisions made by their parents.
  • [P]arenting a child with Down syndrome can bring the same happiness as parenting any other child, and that a diagnosis of Down syndrome is not a tragedy, at least for our family.
  • Most of all, I wished not to live in a world where its necessary to justify why people with Down syndrome should continue to be born.

These lines need to be stenciled on the walls of OB practices, testing laboratories, departments for public health, and the walls of academia.

There is much more to be gained from reading the full piece. I hope you will by accessing it at this link. And then share it with your personal network and your medical providers.

(Hat tip to David Perry, who blogs at How Did We Get Into this Mess,  for bringing this to my attention).

Comments

  1. “Research shows that the number of women who choose to abort a fetus with Down syndrome
    diminishes significantly when they are given full, unbiased information about the meaning of that diagnosis.” Do you know where I could find this research information?

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