Share your story about your prenatal experience

Image of a nuchal translucency test.

Image of a nuchal translucency test.

In today’s news collection: researchers are seeking mothers to share their prenatal experience; a mom wishes she had had the wisdom gained after having her child with Down syndrome when she first viewed her on ultrasound; and, a mom sets up a support group for parents whose only child has Down syndrome. 

  • Duke University is conducting a study. Your participation could improve the patient prenatal testing experience. You can participate by clicking on this link. More from the invitation:

If you or your partner recently received a prenatal diagnosis of Down syndrome (DS), you have an opportunity to share your story here. Kathryn B. Sheets, MS, CGC and Blythe G. Crissman, MS, CGC are genetic counselors at Duke University Medical Center in Durham, North Carolina who are conducting a study to better understand patients’ experiences with prenatal diagnosis and making decisions for the pregnancy. Participation will improve our knowledge and help us to provide appropriate information, resources, and support to individuals in similar situations. Sharing your journey could benefit other individuals or couples going through a similar experience in the future. Participation in this study involves completing an anonymous, web-based questionnaire”.

  • Amy Julia Becker writes on new ultrasound technology offering HD resolution, and how she wished she had the wisdom gained from having her daughter with Down syndrome, when she first viewed her on ultrasound:

Our daughter Penny was diagnosed with Down syndrome at birth, and at first I felt anger at the ultrasound technicians who had seen her along the way. But later I realized they had done their job—Penny had no anatomical concerns that needed medical intervention. She was a healthy baby, just as the images had suggested. But I had allowed those images to suggest that our baby was under our control, created in our own image. I wish that instead I had understood our daughter as a gift coming from God for us to receive with gratitude and wonder.

  • A mom creates an online support group for parents whose only child also has Down syndrome, because, as she says, “None of us should ever feel alone.”

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