{"id":313,"date":"2010-07-29T11:00:05","date_gmt":"2010-07-29T11:00:05","guid":{"rendered":"http:\/\/blog.beliefnet.com\/thinplaces\/2010\/07\/diagnosing-down-syndrome.html"},"modified":"2010-07-29T11:00:05","modified_gmt":"2010-07-29T11:00:05","slug":"diagnosing-down-syndrome","status":"publish","type":"post","link":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/2010\/07\/diagnosing-down-syndrome.html","title":{"rendered":"Diagnosing Down Syndrome"},"content":{"rendered":"


\n\"stethoscope.jpg\"<\/a><\/span><\/p>\n

There were three pediatricians in our wedding party. One
\nbridesmaid. Two groomsmen. So we have a nice list of friends to call whenever
\nwe have a question. I’ve asked them to talk me through the signs of
\ndehydration, the best way to treat wheezing, the various questions to ask back
\nwhen one doctor suspected Penny had leukemia (she didn’t). We’ve discussed
\nprenatal testing options and the impact of vitamin supplements and a host of
\nother issues<\/p>\n

This past weekend, I was having lunch with one of these
\npediatrician friends, and I finally had the chance to answer a question of
\nhers. She said, “You know, I’ve been practicing for almost six years, but I’ve
\nnever had to give a diagnosis of Down syndrome. Or of anything hard, for that
\nmatter. Do you have any advice for when it does happen?”<\/p>\n

Her question brought me back to our own time in the hospital
\njust after Penny was born–the doctor with sweaty palms who had trouble looking
\nus in the eye. The nurse who called Peter out of the room. The anxiety and
\nsadness and fear of it all. The doctors couldn’t have changed the emotions. But
\nthey could have made it easier.<\/p>\n

I described our experience, with Peter in a dimly-lit supply
\ncloset surrounded by doctors, Penny being poked and prodded in the nursery, me
\nlying in the hospital bed wondering why I was suddenly all alone. I said, “The
\ncardinal rule is that, assuming it’s possible, you tell both parents together
\nwith the child present. And you give the facts that they need to know in the
\nmoment, nothing more.”<\/p>\n

We went back and forth to construct a script: “Something
\nlike, ‘I wanted to tell you that we suspect your child has Down syndrome. We
\nwant to help you welcome him\/her into the world. Right now, we’ll need to do a
\nfew more tests. We can help get you connected with some other parents who can
\nsupport you if you’d like. You have a beautiful child, and together we’re going
\nto find all the help you need.”<\/p>\n

My friend asked me a few more questions about my experience,
\neven a few questions about Down syndrome. I told her how the life expectancy
\nhas changed dramatically (more than doubled in the past few decades), how I
\nsuspect that early intervention and integrated education will mean more and
\nmore opportunities for kids with Downs to learn and work and live
\nindependently. <\/p>\n

And then it hit me that having a script and having all the
\ncorrect medical information wasn’t the most important thing after all. “You
\nknow,” I said, as the waiter cleared our dishes, “the thing that matters most
\nof all is what you, as a doctor, think about having a child with Down syndrome.
\nIf you’re horrified by the thought, then there’s no way you can convey hope to
\na parent. But if you believe that kids with Downs and other disabilities
\nactually have something to offer… that you’re giving hard news, but not bad
\nnews… that’s really what will make all the difference.”<\/p>\n

One final note: Dr. Brian Skotko has recently published two documents, one called “Prenatal Diagnosis of Down Syndrome: How Best to Deliver the News,” and the other “Postnatal Diagnosis of Down Syndrome: How Best to Deliver the News.” Click here<\/a> to see a list of these and other articles by Dr. Skotko, and please pass along this information to your child’s pediatrician. <\/p>\n

<\/p>\n","protected":false},"excerpt":{"rendered":"

There were three pediatricians in our wedding party. One bridesmaid. Two groomsmen. So we have a nice list of friends to call whenever we have a question. I’ve asked them to talk me through the signs of dehydration, the best way to treat wheezing, the various questions to ask back when one doctor suspected Penny…<\/p>\n","protected":false},"author":88,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7,1,6],"tags":[],"class_list":["post-313","post","type-post","status-publish","format-standard","hentry","category-disability","category-down-syndrome","category-family"],"yoast_head":"\nDiagnosing Down Syndrome - Thin Places<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/2010\/07\/diagnosing-down-syndrome.html\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Diagnosing Down Syndrome - Thin Places\" \/>\n<meta property=\"og:description\" content=\"There were three pediatricians in our wedding party. 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Two major life experiences have shaped her writing and her faith\u00e2\u20ac\u201dcaring for her mother-in-law as she battled cancer and welcoming her daughter Penny into the world after she was diagnosed at birth with Down syndrome. Both experiences expanded and enriched her understanding of what it means to be human and to receive each and every person as a gift.\u00c2\u00a0 A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, and the forthcoming A Good and Perfect Gift (Bethany House). Her essays have appeared in First Things, The Philadelphia Inquirer, The Christian Century, ChristianityToday.com, and Bloom, among other online venues.","sameAs":["http:\/\/amyjuliabecker.com"],"url":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/author\/amyjuliabecker"}]}},"_links":{"self":[{"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/posts\/313","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/users\/88"}],"replies":[{"embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/comments?post=313"}],"version-history":[{"count":0,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/posts\/313\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/media?parent=313"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/categories?post=313"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/tags?post=313"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}