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Parents to receive a Down syndrome diagnosis differently, thanks to new guidelines (and moms)

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Zoe Romanowsky - published on 05/05/22
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Thanks to determined women who've been advocating for families for 8 years, the American Academy of Pediatrics (AAP) has changed its recommendations.

You may have heard it said, if you want something done, give it to a busy mom. A recent victory for those who advocate for pregnant women, families, and people with Down syndrome illustrates this truism very well.

Over eight years ago, a group of passionate moms joined forces and advocated around the country for better prenatal medical care guidelines for Down syndrome pregnancies, and for families to be connected to national and local support groups as soon as possible. Now, these women, part of the Down Syndrome Diagnosis Network (DSDN), are celebrating big time.

The American Pediatrics Association (APA) has just updated its guidelines for all pediatricians caring for children and adolescents with Down syndrome. The report includes new guidance about how physicians should deliver a diagnosis to families -- for example, congratulating parents rather than apologizing, and making sure a support person is present for parents during the discussion.

Members of the DSDN couldn't be more thrilled that the APA has finally taken these important steps. Jenny Di Benedetto, the Director of Medical Outreach, wrote on the group's Facebook page:

Di Benedetto's words are inspirational for anyone who needs encouragement and support to keep going when your cause is just. Thanks to her group's efforts over these many years, and the APA's decision to listen and learn on this issue, more families will receive support and be encouraged to see a Down syndrome diagnosis in a life-affirming way.

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