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


Eleonora_os | Shutterstock

Zoe Romanowsky - published on 05/05/22

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.

LiveAction further summarizes the guidelines,

Physicians are also told to leave out their own personal biases, to use up-to-date and accurate information, to use person-first language, and to connect parents to local support groups and resources. Doctors are also told to emphasize the positive aspects of Down syndrome, including improved medical outcomes and the fact that people with Down syndrome and their families overwhelmingly report being happy with themselves and their lives.

When it comes to prenatal diagnoses, doctors are to include prenatal care considerations, and to take a “non-directive” approach to discussing options; in other words, no more assuming the parents want an abortion, making appointments without their permission first, or pressuring them into abortions.

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:

To say we were stunned is an understatement. While we are working feverishly now to ensure this information is in the hands of medical professionals and our families across the country, we also find ourselves in those rare moments of quiet time letting it sink in that… we did it. We made a real and tangible change in the way a Down syndrome diagnosis is going to be delivered. [We] never gave up. For 8 YEARS we advocated and this week, when we were least expecting it, the medical community showed us that they listened. They heard us, they agreed with us, and they are advocating alongside us. When you believe in something to your core, and you are willing to put in the work to make a difference and never give up, you can make it happen.

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.

Down Syndrome
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