problems I find<\/a> with the
\nprenatal testing industry in general, and prenatal screening for Down syndrome
\nin particular. Much as I hope things will change, I do not hold doctors solely responsible
\nfor the high rates of abortion (estimated at 85-90%) for women whose babies
\nhave a prenatal diagnosis of Down syndrome. Doctors participate in a larger
\ncultural problem. Most of them think their misguided advice comes, in their
\nmind, as an act of care and compassion.<\/p>\nMost of what I’m about to write is anecdotal. It comes from
\nconversations with friends who are doctors, with medical students who have
\nvisited our home, and from a conversation with a developmental pediatrician who
\nworks exclusively with individuals with Down syndrome. <\/p>\n
From what my friends tell me, most doctors have a clinical
\nunderstanding of Trisomy 21. They know the biology of it–the various ways an
\nextra 21st<\/sup> chromosome makes its way into the development of a child;
\nthe list of physical, mental, and medical complications an extra chromosome can
\ncreate. Most doctors (like most people in the general population) do not have a
\nsocial<\/i> understanding of Down
\nsyndrome. They haven’t spent time with people with Down syndrome. They haven’t
\nhad dinner or gone for walks or experienced life through the eyes of someone
\nwith a disability. One pediatrician friend told me, for instance, that he knows
\nhe should prescribe Physical Therapy for a patient with Downs. He has no idea
\nwhat happens in a PT appointment. He has no idea how much time that takes and
\nwhether it causes stress or eases the burden of a family. It’s just the thing
\nto do when a patient has low muscle tone. <\/p>\nMy pediatrician friends also explained that when it comes to
\nrelationships with individuals with Down syndrome, many doctors’ experience is
\nlimited to the hospital. In medical school, when on rotation, doctors see
\npatients with Down syndrome who put flesh and blood to the list of potential
\nproblems they learned in class– premature birth, heart defects, leukemia,
\nceliac disease, Alzheimer’s. They don’t see the majority of the population with
\nDown syndrome who are not admitted to the hospital for long stints. They don’t
\nsee the kids at Special Olympics who are racing around with a broad smile. They
\ndon’t see the teenager eating dinner with his family. They don’t see the woman
\nwho lives on her own and walks to work every day…<\/p>\n
<\/p>\n
<\/p>\n
Doctors also embody an exaggerated version of modern cultural values surrounding success, achievement, and intelligent. The developmental pediatrician I spoke with said, “Most of my colleagues think having an IQ lower than 120 is a tragedy.” (An IQ of 100 is normal. Most people with Down syndrome have IQ’s between 50 and 80.) It’s hard to imagine a person with Down syndrome becoming a doctor. It’s hard for a doctor to imagine a happy and fulfilling life as a person with Down syndrome.<\/p>\n
Finally, doctors are afraid. In recent years, parents have begun to sue doctors who haven’t given them a prenatal diagnosis in the case of severe disability. Doctors often push for prenatal screening because they fear a lawsuit if they haven’t given a woman all the information available about the child in her womb.<\/p>\n
Fear, cursory information, experience with children who are suffering, value placed upon academic achievement–all contribute to a culture that inadvertently devalues the lives of individuals with Down syndrome. Hopefully, that culture is changing, with the provision of greater resources to inform people within the medical profession about the realities of life with Down syndrome, and with programs like that of Robert Wood Johnson Medical School to introduce medical students to families<\/a> with children with disabilities in their home context.<\/p>\nWithout modern medicine, Penny would have a hole in her heart, a life expectancy of 25 (instead of 60), chronic ear infections, and any number of other physical difficulties. I am grateful for the dozens of doctors who have participated in her care over the past five years, and I am hopeful that hers will be but one more story that begins to change the cultural expectations and fears surrounding Down syndrome. <\/p>\n","protected":false},"excerpt":{"rendered":"
I’ve written a lot about the problems I find with the prenatal testing industry in general, and prenatal screening for Down syndrome in particular. Much as I hope things will change, I do not hold doctors solely responsible for the high rates of abortion (estimated at 85-90%) for women whose babies have a prenatal diagnosis…<\/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-402","post","type-post","status-publish","format-standard","hentry","category-disability","category-down-syndrome","category-family"],"yoast_head":"\n
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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\/402","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=402"}],"version-history":[{"count":0,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/posts\/402\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/media?parent=402"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/categories?post=402"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/tags?post=402"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}