News archives

Duke Down Syndrome Prenatal Diagnosis Study

October 22, 2013 in News

From the Duke University School of Medicine Down Syndrome Prenatal Diagnosis Study:

“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, which is managed by a secure, Duke approved program called REDcap. You may also print a copy of the survey to take offline.”

Visit “About the Study” for patients to read more.

Down Syndrome Pregnancy News and Gratitude

October 31, 2012 in Blog, News

Stephanie Meredith (left), Nancy Iannone (middle), and Heather Trammell (right)

For the past two years, Down Syndrome Pregnancy has operated as an independent 501(c)(3) charity serving expectant parents nationwide under the wonderful guidance of Nancy McCrea Iannone as the Executive Director. Nancy has been unfailingly generous, kind, and dedicated in this work—along with the amazing Down Syndrome Pregnancy Board of Trustees: Melissa Kline Skavlem, Amy Geoffrey, Sarah Hartway, Heather Trammell, Kelle Hampton, and Lisa Cape Lilienthal. Under their leadership, this work has grown to support over 75,000 online visitors in the past two years, and nearly 3300 copies of the booklet, “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome,” have been distributed nationwide.

Given the success and responsibility of this effort, Down Syndrome Pregnancy is now being absorbed by the University of Kentucky’s Human Development Institute (HDI), which currently administers both Brighter Tomorrows (an online resource for new and expectant parents) and the Kennedy Foundation’s nationally recommended diagnosis booklet, “Understanding a Down Syndrome Diagnosis.” Together, all of these resources will complement each other to provide comprehensive support for new and expectant parents nationwide.

Missy, Nancy, and Amy will continue to moderate the BabyCenter Down Syndrome Pregnancy board, and they will continue to provide guidance and consultation for the Down Syndrome Pregnancy website and resources. However, the program will now have the additional support of HDI as a distinguished University Center for Excellence in Developmental Disabilities, and the website will be managed by Stephanie Meredith, the Medical Outreach Director at HDI, who has also been part of Down Syndrome Pregnancy from the beginning as the co-author with Nancy of “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome.”

Please take a moment to share what Down Syndrome Pregnancy has meant to you over the past two years, and please also consider making a donation today so that we can continue growing the program to help more and more expectant parents.

New healthcare guidelines (pediatrics)

July 29, 2011 in Future, Health Issues, Medical Provider, News, Resources

The American Academy of Pediatrics has released new guidelines for pediatricians who have patients with Down syndrome. These guidelines are updated from those provided in our pregnancy book, so expectant parents should have a copy of the new guidelines and provide a copy to their pediatrician if he or she does not have them.

You can download a PDF of the new guidelines here: LINK HERE.

AP story on new prenatal testing; DSP mentioned

June 15, 2011 in Blog, Book, Medical Provider, News, Resources

This week AP reporter Malcolm Ritter wrote a thoughtful story on the upcoming non-invasive diagnostic prenatal testing and the related ethical concerns. Mr. Ritter quoted our own Nancy McCrea Iannone, and mentioned Down Syndrome Pregnancy as a resource for those planning to deliver a baby with Down syndrome. Ethical concerns of various experts, including Dr. Skotko, were explored, and for our expectant parents ready to learn more about these issues it is worth reading.

Particularly insightful was the reporter’s choice to open and close the story with the personal experience of Down Syndrome Pregnancy “graduate” Erin Witkowski. While the larger ethical concerns are important for us as a society, Erin’s story illustrates that, at heart, testing choices are very personal, and influence the “story” of each and every family. We respect the individuality of each family’s path and are proud to serve those families who have joined the Down syndrome community in the prenatal stage.

As we contemplate ethical issues, it is imperative that we applaud the efforts and successes of those involved in ensuring that every expectant couple receiving a diagnosis also receive up-to-date, unbiased, and medically approved information. We urge all stakeholders in prenatal testing to embrace the diagnosis booklets authored by Stephanie Meredith and distributed through Lettercase. A product of the historic “consensus group,” the Lettercase booklets received approval from representatives of the national Down syndrome groups and many major medical groups. These booklets are the gold standard for prenatal Down syndrome diagnosis, and anyone invested in informed decision-making should support these booklets.

Down Syndrome Pregnancy, Inc. provides that vital second stage of support, ensuring that those expectant couples choosing to welcome a child with Down syndrome have as much information and support as possible.

AP story HERE
Lettercase website HERE
Dr. Skotko’s website HERE
Community member reaction HERE

Baby Center features Down Syndrome Pregnancy’s Nancy Iannone

April 26, 2011 in Book, News, Resources

As part of its “Celebrating Moms” promotion, Baby Center is featuring Down Syndrome Pregnancy’s Nancy McCrea Iannone.  This means so much to us because Baby Center’s Down Syndrome Pregnancy discussion board has been and continues to be an invaluable resource for expectant parents as they await the birth of a baby with Down syndrome.  Our pregnancy book Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome was based significantly on the discussions on Baby Center, enhanced by research and medical community feedback.  Neither the book nor this organization would exist without Baby Center and the opportunity it provided for expectant parents to gather together.  Thank you Baby Center!

Happy World Down Syndrome Day

March 21, 2011 in Emotions, Events, News

March 21st is World Down Syndrome Day.  On this the 21st day of the third month (3/21, trisomy 21), we celebrate the lives of our loved ones with Down syndrome. We know pregnancy post-diagnosis can be an emotional time, but today is the day to find the joy and celebration for the member of your family about to join you. I love Conny Wenk’s photos of Julia and Peter, who were so excited as they waited for their little one with Down syndrome to be born. You can see the love and the laughter above.

The internet is abuzz with celebration – video clips, exclamations, excitement.  I will search around today and add to this post the interesting and inspiring snippets I find. Share here if I miss any! 

Of course we think a great way to celebrate would be to tell our expectant parents here or on our discussion board how much your child means to you – our families find so much hope from your stories.  Also, a donation will help us in our efforts to help expectant families.  If there is a perfect day to donate, today would be that day!

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