We do not want sympathy, but we do want love and support

ds-pregnancy_leafAt the News page, some highlights on what you can’t expect when you receive a prenatal test result for Down syndrome. 

  • Self-advocate invited guest for State of the Union

Sara Wolff, a young lady with Down syndrome, will be the invited guest of Sen. Bob Casey (D-PA) for the 2015 State of the Union. From the report:

Mr. Casey said he wanted to honor Ms. Wolff because of her advocacy. She kept him focused on getting the bill passed with a catchphrase, “Stay pumped,” he said. Ms. Wolff testified for the bill at a Senate hearing in July.

  • Penny Becker turns 9

Amy Julia Becker’s daughter, Penny, turned nine, causing Becker to reflect on how little receiving Penny’s diagnosis of Down syndrome told her about her daughter:

Still, the biggest problem I see with these tests is not their false claims of accuracy or even the assumption that abortion will often follow on the heels of a diagnosis of Down syndrome. The problem I see is that of assuming that knowing a child has Down syndrome gives parents much meaningful information at all.

* * *

[T]he diagnostic portrait, even though it included some accurate facts, never showed me anything true about our daughter.

  •  FDA considering regulating NIPS & other LDTs

Beth Daley at the NECIR covers a recent hearing on whether the FDA will regulate laboratory developed tests, like non-invasive prenatal screening laboratories Sequenom, Ariosa, Illumina, and Natera. One argument in favor of regulation:

“A patient travels by an ambulance that is regulated, to a hospital that is regulated, for care using medicines that are regulated, administered by nurses and physicians, who are regulated. Yet today, that same patient’s life or death could hinge on whether a single, unregulated diagnostic test result is meaningful,” Sharfstein wrote.

  • A mom shares her prenatal diagnosis on her blog

What I expect will become an increasingly more common way to share the news, a mom blogs about her prenatal diagnosis:

At this point we do not want sympathy, but we do want love and support.  You can support us by learning more about Down syndrome, staying positive and congratulatory, and recognizing that we might need extra help along the way.

Her first resource cited is Diagnosis to Delivery, one of the resources provided by the National Center for Prenatal & Postnatal Down Syndrome Resources.

(Spoiler alert: her son was born last fall and she continues to blog about her experience parenting a child with Down syndrome. Check out the rest of her blog for updates).

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