prenatal Down syndrome diagnosis

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How the Media Failed Down Syndrome

We are adding our voice to a matter that is being discussed with great emotion in the Down syndrome community. We have been very fortunate in being able to share our daughter’s prenatal Down syndrome diagnosis story on some amazing platforms. But recently it felt like some of our hard work was undone when the Today Show, with a much larger platform, broadcast a story about Olympic gymnast Shawn Johnson and her “pregnancy scare” that occurred when they thought her baby might have Down syndrome.

Natalie Morales narrated the Today Show segment saying: “Then came the news they had been praying for. The tests were negative for Down syndrome”. Shawn and her husband posted, very beautifully and heartfelt, that they would have loved their baby (Down syndrome and all) but that they just wanted it to be “healthy”. ⁣ ⁣

But this is the problem. The Today Show had an opportunity to correct misperceptions. To tell the world that a baby with Down syndrome can be as healthy as a baby without it, but that no baby is ever truly safe from health risks. To encourage people to remember that while a Down syndrome diagnosis is scary and emotional, that a baby with Down syndrome is still a wonderful, beautiful, human baby. Instead they used language such as “risk, scary, healthy, relief” and “uplifting update AFTER pregnancy complications”.

Any parent working through a diagnosis would see the message being reinforced that a diagnosis of Down syndrome is scary and undesirable. These messages are exactly what made our experience finding out our daughter Gwendolyn’s diagnosis last year when I was 11 weeks pregnant so completely and unnecessarily devastating. ⁣ ⁣

Can you imagine the Today Show celebrating a baby for being “healthy” in relation to sexual orientation, skin color, gender, or ethnicity? When are we going to have social change and finally just wake up?

There has been much emphasis on the “me too” movement, which is awesome, and we celebrate different races, colors, and sexual orientations. But people with disabilities are left bringing up the caboose. They are the last thought about, the most vulnerable, and in need of our voices the most.

We just wish the Today Show had done more, with this experience of Shawn Johnson’s prenatal testing, to help remove the culture of fear surrounding Down syndrome. We need to help parents work through a prenatal diagnosis in a healthier way. We, and so many others in our community, wish the Today Show had used this opportunity to spread a positive message about Down syndrome. Despite this, we know there is so much love being spread about Down syndrome from other sources, and we are glad to be part of that movement!

#DownSyndrome #DownSyndromeDiagnosis #PrenatalDownSyndromeDiagnosis #TodayShow #Media #speakup #ThisIsDownSyndrome

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Any advice or preparations you all can share on what to expect with my daughters VSD correction surgery next month. She is 2 months old. #DownSyndrome #PrenatalDownSyndromeDiagnosis