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 Nancy privately if you wish at nancy@downsyndromepregnancy.org .

Happy Mother’s Day 2012

May 11, 2012 in Friends and Family


“A Family’s Love on Mother’s Day”
This weekend we will celebrate Mother’s Day. For our expectant mothers, this can sometimes be a bittersweet time. They have so many worries, and have not yet experienced the rewards of parenting a child with Down syndrome. They often hold on tight to our words of hope, and the vision of a future as happy as most of ours. They may have moments of sheer happiness in their pregnancy, and some fully reclaim that joy of expecting. One of our moms from the Baby Center DSP discussion board, Lindsay, sent us this picture of her family taken by her sister-in-law which captures that excitement, the anticipation of a family made complete by the addition of a little one with Down syndrome.

Bloggers, will you share your Mother’s Day posts with our expectant moms?

(Also, this photo is in a “Mommy and Me” contest – vote for it if you wish. Go to wncy.com/, then go to Mommy And Me Photo Contest under quick links. Register and then go to your email to confirm. This picture is on page 3, picture 28.)

Your prenatal care

May 4, 2012 in Medical Provider, Post-Diagnosis Health

Many parents choose to receive a diagnosis in order to receive more prenatal care, yet the prenatal care for a Down syndrome pregnancy varies throughout the country. What has been your experience? Did you feel you were receiving adequate care? Did you wish your doctor would be more aggressive? Were you overwhelmed with the tests and wish they would step back?

This post was originally posted on October 7, 2010.  We hope to see even more input to help expectant parents.

Positive support from friends, family, and health care professionals

April 20, 2012 in Comments, Friends and Family, Medical Provider, Support

We would like to hear from both experienced and expecting parents about the wonderful support they have received from friends, family, and health care professionals. We spend a great deal of time helping parents cope with negative or stinging comments, mainly because we do not have built-in coping mechanisms for those unexpected events. Sometimes when in the stress of pregnancy post-diagnosis, a negative comment can send us reeling, and may actually drown out the many positive comments we hear.

However, there are extraordinary people out there. People who rise to the occasion and give a piece of themselves to us during our darkest hour. Focusing on their words, their actions, their support can help us build our confidence, and reinforce the knowledge that the world is a welcoming place for our children.

Please share in our comments the words, actions, or attitudes of those around you who gave the best of themselves and in turn helped you cope with sadness or look forward to a bright future. If you wish: if you are on Facebook, also post your comment to your Facebook status and link to this blog post. Or post a thank you (sample linked below) in your Facebook status.

Booklet for Friends and Relatives: HERE
Sample thank you letter to the person you appreciate: HERE

(Note: We recognize that some things that bring comfort to some people may not help others because of the diversity of the personalities and beliefs of our expectant parents. For general guidelines, see our Relatives booklet linked above. Supporters should tailor their comments and support to match what they know about the personalities of the expectant parents.)

DSP Trustee Kelle Hampton: book Bloom New York Times bestseller

April 14, 2012 in Book, Emotions, News


Down Syndrome Pregnancy trustee and photographer Kelle Hampton, who helped create our pregnancy book Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome has written a memoir entitled Bloom which chronicles her life before and after the birth of her daughter Nella, who has Down syndrome. Many congratulations to Kelle as Bloom is now #11 on the New York Times bestseller list! Though many of our parents with children with Down syndrome have devoured Kelle’s book, I have to wrap up my semester and finish grading before I can enjoy this book with my book club. I am excited about the chance!

More about the book (and a trailer): HERE
Kelle’s blog: HERE

Dealing with People and Comments

April 13, 2012 in Comments, Emotions, Friends and Family

Part of putting yourself “out there” with the news is that you then have to deal with comments from the people you know. Most people mean well, but sometimes things sound “off” to an expectant parent. What kinds of statements make (made) you uncomfortable? Did you respond? Do you wish you had said something different? What were some of the best comments, and how did they help your state of mind? Aside from the comments, are you having any issues dealing with people around you – are you having trouble connecting?

Experienced parents, do you have any useful strategies for our expectant moms?

(Originally posted December 2010.)

The emotional impact of diagnosis

April 3, 2012 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?

(Originally posted on October 1, 2010, this is a topic of great importance to our parents and worthy of being revisited.  Fresh comments would be very helpful to expectant parents.)

Atlanta Hospital announces use of new prenatal test: “Harmony test” by Ariosa

March 26, 2012 in Diagnosis, News

Northside Hospital announced today that in conjunction with Atlanta Perinatal Consultants, it will be using a new prenatal test for Trisomy 21 (commonly referred to as Down syndrome) and Trisomy 18 (sometimes referred to as Edwards syndrome). Atlanta Perinatal Consultants at Northside Hospital will be the first to offer this new test, dubbed the “Harmony Prenatal Test,” which was developed and offered exclusively by Ariosa Diagnostics (formerly Aria). The test is offered as early as 10 weeks gestation at the request of the physician.

Ariosa representatives have been helpful in answering questions by advocates in the Down syndrome community. In response to e-mailed questions from DSP, Ariosa CEO Ken Song described the accuracy of the Harmony test as “an analytical test with enhanced performance, and it is up to providers as to how best to incorporate our test in their practice and patient management. Studies to date show very high accuracy, 99% but not 100%. We believe that a confirmatory test with invasive procedures should be done for all positive tests.”

Dr. Kevin J. Gomez, geneticist and maternal fetal medicine specialist of Atlanta Perinatal Consultants, notes that the test “should be introduced responsibly into clinical practice” and that the results would be combined with detailed ultrasound examination to provide more information. Northside’s press release from today includes a quote by DSP executive director Nancy McCrea Iannone, noting the availability of useful, reliable information in the Lettercase diagnosis booklets for those receiving a positive on the test.

Ariosa’s Harmony test website links to many resources for information about Trisomy 18 and Trisomy 21.

Ariosa website: HERE

Research (full article on results): HERE

Ariosa press release: HERE

Northside Hospital press release: HERE

Organization & Preparedness 101

March 23, 2012 in Birth Plans, Future, Health Issues, Medical Provider, Post-Diagnosis Health

Pregnancy post-diagnosis is often a blur of medical appointments, especially late in pregnancy.  Expectant parents receiving co-care from several health care professionals may see multiple doctors in an obstetrics practice and multiple doctors in a maternal-fetal medicine practice.  There may be a lists of tests, lists of questions, scraps of paper with phone numbers.  We highly recommend making an organizational plan to keep track of all of your medical information during pregnancy.  Parents should purchase a a binder/ notebook to keep track of dates, medications, doctors, tests, results, questions, and answers. Include your birth plan as well.  Ask your doctors for copies of your medical records, especially the karyotype, which shows the baby’s chromosome count.

You may also want to start a binder for the baby, starting with the karyotype and a summary of the pregnancy.  Keep track of all medical personnel, tests, etc. connected with the baby in this binder.  Some items which may be helpful to start are the following:

The Down Syndrome Growth Charts

The Down Syndrome Health Checklist
(The health guidelines have been recently updated – download HERE)

The Down Syndrome Developmental Charts

Blogger Ria provides amazing advice on creating an organizational system, with extremely helpful links and step-by-step instructions.

(original post March of 2011)

Diagnosis Day: Parents, what would you say to your past self?

March 12, 2012 in Emotions, Future

Taylor loves ballet!


For so many of us, the day we received a diagnosis for our child with Down syndrome is a day of shock and sorrow. We moved forward from that time, and have grown along with our children.  In the book The Time Traveler’s Wife, the main character travels back in time, and at one point tells his doctor that the doctor’s unborn child has Down syndrome.  “He’s a wonderful boy,” is the attempt at reassurance from the time traveling friend.  Having spoken to so many expectant parents, I can say that this bland generalization is not enough for those facing that raw time of fear of the great unknown. Parents often thirst for so much more.

Experienced parents, if you could travel back in time and meet yourself on that day, what would you say?  What would your past self need to hear about your child, your life, your family?

Original post April 22, 2011.

Preparing for World Down Syndrome Day 3/21/2012

March 7, 2012 in Events, Resources

Expectant parents, in a few weeks the Down syndrome community will be celebrating World Down Syndrome Day. If you feel you are ready to celebrate in some way, we have a downloadable flyer which you may use for local advocacy. The flyer is appropriate for elementary school students in the United States, so if you have older children in elementary school this is appropriate for their classrooms. You do not have to share the news of your baby’s diagnosis in order to share the flyer.

You may need to seek permission in advance to be able to distribute the flyer. School districts may have different policies, but if you wish to distribute the flyer in your local schools, be prepared to make (and pay for) the copies yourself. Each school may ask you for a specific number of copies, and perhaps require you to divide them into piles for easier distribution. They may expect you to present proof of advance approval as well. Asking questions of your district now will save time later.

Note that color copies may be expensive. You may wish to have a few color copies for bulletin boards and a larger number of black and white copies for distribution.

Also note that I have received permission for all images for distribution to schools. Permission for use is limited to the scope intended, positive education about Down syndrome, and for the content in the flyer, unmodified except to add legitimate local information. Local groups, there is a blank segment on the second page to add local group, website, upcoming events.

We also have other helpful information for all advocates in the links below.

Download the flyer: HERE

Download a sample letter to school district: HERE

List of educational materials for students: HERE

Down syndrome items to share with classes: HERE

More information on World Down Syndrome Day (international website): HERE

NDSS info: HERE

Events at the U.N. in New York on WDS Day: HERE