Diagnosis archives

Playing the “waiting game”

July 24, 2014 in Diagnosis, Emotions

Did you decline invasive testing, but had a higher chance that your baby has Down syndrome? Many moms keep a “foot in each world,” wondering if their child has Down syndrome, but unwilling to take the risk of diagnostic testing. Many wish to prepare for the possibility so that they can hit the ground running if the baby has Down syndrome. Others ask their doctors to treat the pregnancy as if the baby has Down syndrome. Are you a waiting mom? What challenges has the not knowing caused you? What concerns do you have as you wait? Experienced moms who waited for answers, do you have any advice?

New non-invasive prenatal screening tests, such as the MaterniT21™, Verifi®, Harmony™, and Panorama™ tests, have also changed the “waiting game” for many expectant moms who can get a result that is now more accurate than previous screening tests (though false positives and negatives do occur). We are finding many who are using those results as confirmation for their pregnancy planning purposes without going on for an amnio or CVS. The amnio and CVS are still considered the most accurate (diagnostic) but also have a very small risk of miscarriage. In fact, one recent study showed that the percentage of women getting an amnio or CVS has dropped since the new tests have been introduced. What are your thoughts on how the new blood tests have (or would have) impacted the “waiting game” in your pregnancy?

All the single ladies

June 25, 2014 in Diagnosis, Emotions, Future, Support


If you were a single mom during your pregnancy or after your baby with Down syndrome was born, we would love to hear from you here on this blog post. Some of our moms are single moms when they find out their babies have Down syndrome. A few part ways with their partners after a diagnosis. While this may not happen often, those moms would really benefit from hearing from experienced single moms. Will you share your story here?

The emotional impact of diagnosis

March 19, 2014 in Diagnosis, Emotions, Post-Diagnosis Health


Many moms report that the most difficult part of being the parent of a child with Down syndrome is the diagnosis and the immediate aftermath. Moms report thoughts and emotions they never thought they would have. Most are not prepared for the onslaught of emotions, and the intensity shocks them. Have you just received a diagnosis? What are you feeling? If some time has passed, how did your feelings change? If your baby has been born, how do you feel now? Do you believe receiving a prenatal diagnosis has helped your state of mind now that you have your baby? Do you regret your decision to find out in advance?

CoorDown in Italy also produced this beautiful video for pregnant moms featuring individuals with Down syndrome. Their message to you expectant moms who may be struggling to understand a diagnosis:

Watch this video featuring people with Down syndrome and their message to future moms by CoorDown in Italy.

In addition, you can also read letters from individuals with Down syndrome to to new members of the Down syndrome community at the Congratulations Project. These letters are designed to inspire, encourage, welcome and, most importantly, congratulate new parents and siblings of a child with Down syndrome.

Prenatal Testing: Insight from Moms

February 5, 2013 in Diagnosis, Emotions

Amy Julia Becker’s recently released book, “What Every Woman Needs to Know about Prenatal Testing,” explores new advances in prenatal testing technology, the ethical implications of testing, different reasons for testing, and how prenatal testing impacts the author from a faith-based perspective. Amy Julia is also the mother of a daughter with Down syndrome and the author of “A Good and Perfect Gift: Faith, Expectations and a Little Girl Named Penny.”

Amy Julia’s target audience for “What Every Woman Needs to Know about Prenatal Testing” is pregnant women who have not yet undergone prenatal testing or those who plan to start a family. She explains the range of prenatal tests for Down syndrome (and other conditions) in language that is easy to understand and then explores the reasons why different women may or may not choose to take tests. The approach is informative and balanced — exploring the different practical and ethical issues at hand.

Author Amy Julia Beckers says:

“All pregnant women will be offered the option of prenatal testing. As a result, all pregnant women face a series of personal and ethical questions about those tests. This book is designed to help women navigate the testing process by considering three questions–what is prenatal testing? what information does it offer? and what information do I want, and why? Women who have already started down the road of prenatal testing can benefit from this book in that it offers resources to think through the role of disabilities within our society and the possibilities for considering a good life for children with disabilities. There is plenty of medical information out there about prenatal testing, but this book is designed as one mother talking to other mothers and potential mothers about the questions that matter most to us as we prepare to welcome our children into the world.”

We also appreciate that Amy Julia refers to both Down Syndrome Pregnancy and Lettercase as suggested resources for women who are undergoing testing.

Amy Julia has followed up the release of her book with a series of blog posts from women sharing their different perspectives on prenatal testing, including one from our “Diagnosis to Delivery” co-author Nancy Iannone:

I Regretted My Amnio by Meriah Nichols

Why I Wish I Had Chosen Prenatal Testing by Patti Rice

What do you think? Are you grateful that prenatal testing allowed you to prepare or do you wish you hadn’t found out?

The Shape of the Eye (book review)

February 8, 2012 in Dads, Diagnosis, Emotions, Future, Health Issues, Resources

The Shape of the Eye by George Estreich is one of my favorite books and I recommend it highly for those who have a loved one with Down syndrome (or will soon!) and for anyone who loves books. I wanted to have written a beautiful book review worthy of his work, but I find that the time eludes me. However, Lisa Morguess has written a lovely review for you to enjoy on her blog Turn the Page, and as a bonus has an interview with the author on her personal blog Life as I Know It. Read Lisa’s review and George’s interview, buy the book and devour it, and when you love it as much as we do, vote for The Shape of the Eye in the Oregon Creative Non-Fiction category.

Lisa Morguess’ review: HERE
Lisa’s interview with George Estreich: HERE
Buy the Shape of the Eye: HERE

The journey: one size does not fit all

February 7, 2011 in Diagnosis, Emotions, Resources, Support

In the five years we have worked with expectant parents, we have seen many similarities in the experiences of those in post-diagnosis pregnancy.  Reading of these experiences allows expectant parents to know they are not alone.  We have been where you are.  We understand.  However, this population is very diverse in terms of life experiences, beliefs, personalities, and circumstances. Expectant parents do not all react the same way, nor do they all need the same form of support.

There are many avenues of support available, many ways of gaining confidence, many ways to be comforted and empowered.  Which best fit your personality?  Which best met your needs?  Local groups, therapy, on-line support?   Books on Down syndrome, meeting families, prayer?  Scientific research, personal stories, a specific resource?

Please share with us the combination of supports that best worked for you.

Welcome expectant parents!

November 12, 2010 in Blog, Book, Diagnosis, Emotions

Congratulations on your pregnancy, and welcome to our community. If you have just received a confirmed or suspected diagnosis, you may be feeling very afraid, alone, and overwhelmed. We offer information that can help.

1. A free downloadable Down syndrome pregnancy book.  (Suggested $10 donation.) Buy the printed version HERE (Woodbine House).

2. A blog on our home page.  The current post is always on the front page, and you can also search by categories.

3. Open dialogue on Baby Center’s Down syndrome pregnancy board.  This is a public board not owned by us, but our own Nancy, Missy, and Amy are there on a daily basis to answer questions, provide comfort, and facilitate peer support.

4.  Valuable supplemental information in our Resources section.

We’re here to help you on this journey, prepare you for the immediate future, and give you hope.  Feel free to contact Stephanie privately if you wish at stephanie.meredith@uky.edu.

DownSyndromePregancy.org is administered as part of the National Center for Prenatal and Postnatal Down Syndrome Resources at the University of Kentucky’s Human Development Institute (HDI).

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