Blog archives

Moms Make a Difference!

June 10, 2013 in Blog, Book

We’re so excited to share that we reached our fundraising goal so that we can send copies of “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome” to all prenatal genetic counselors nationwide in July! We are so thrilled that one family who used both Lettercase and Down Syndrome Pregnancy launched this campaign, and we appreciate all of you who joined in this effort with your stories and your donations to make this happen. We’re also grateful to the National Society of Genetic Counselors for their support in providing us with the contact information for the genetic counselors, and we appreciate Woodbine House as they print our books! We’ll keep you posted via Facebook and Twitter and share photos of our mountain of books as we prepare for shipping.

Pregnancy Blog Posts

May 15, 2013 in Blog, Emotions, Resources

Leticia Keighley from Australia recently shared with us the beautiful story of her pregnancy on her blog: Embracing Wade. She offers a raw and authentic account of her experience “waiting it out” after receiving a 1:69 chance of having a baby with Down syndrome.

“My pregnancy was definitely a roller coaster of emotions where I questioned my resolve, my decisions and my sanity every time I got a new test result. But right from the beginning, all the way through till now, I had reasons why I didn’t want to test for Down Syndrome. This post is not about what I think everyone should do, it’s about what I did and how it helped me get through the turmoil of prenatal diagnosis. Even though there were ups and downs during those 9 months, by the time Wade was born, I was ready and happy and waiting there with open arms to meet him whether he had DS or not and if any of my thought processes help other women in similar circumstances then its achieved its purpose.”

Below is our list of blogs from other moms who received a prenatal diagnosis and then blogged about the experience during their pregnancy. Those stories are so real and meaningful to expectant parents who can then go on to read the outcome for families. Please add to our list in the comments.

Mother’s Day 2013: Jenny’s Story

May 10, 2013 in Blog, Book, Diagnosis, Emotions

As part of our 2013 Mother’s Day campaign, we’re sharing stories to uplift and inspire moms who received a prenatal diagnosis of Down syndrome. Enjoy!

Jenny’s story:

Our story began the day of our fourth child’s 20 week anatomy scan. We had declined all early testing each pregnancy, but because of previous preterm labor issues, we had regular ultrasounds to see our little bug. This had been the easiest pregnancy of all the kids, and being seasoned parents, I didn’t reschedule our ultrasound when we discovered my husband had a conflict that day. I was anxious to find out whether we would be evening up the gender war or adding an even greater advantage to the boys’ side. I planned to go buy a gender specific outfit and surprise dad afterwards. I dropped all the kids off and happily arrived to my appointment.

I’ve had lots of ultrasounds throughout my pregnancy lifetime, but it is still incredible to me to see a life we had created growing and moving inside my body. Hearing the heartbeat is one of the sweetest sounds in the universe. My ultrasound tech was wonderful and explained all the bits and pieces, although not a lot of explanation was needed in the gender area. After having two boys, it was confirmed quickly that my daughter would have 3 brothers! After some shifting around (more than usual) the tech said she got what she needed and sent me to wait for the rest of my appointment with my doctor.

I had already begun to feel a little uneasy; something just seemed off. When the doctor walked in, I knew something was up.  He did his regular checks and then asked me to join him on the chair to review the ultrasound. My stomach dropped.

Within the next minutes, I heard that my baby did not have a nasal bone and that he recommended that I see a perinatalogist for a level 2 ultrasound. This was a marker for Down syndrome. Everything else looked fine (heart, GI, etc.) as those could also be indicators.

Next, I drove to my husband’s office to tell him the news. Oddly, as I cried during the 30 minute drive, I was most worried about the stigma around Down syndrome. How would he be treated? Would he ever fit in? What would others say and do?

My unsuspecting husband joined me in the car; I couldn’t bring myself to walk in. I told him another son was on he way and then I dropped the bomb. He comforted me and reminded me that our baby would be our baby no matter what. If I wanted more information, schedule an appointment. He was a rock of strength and his faith, unfaltering.

Feeling more at ease, I went shopping for baby boy clothes. Retail therapy was in order.

I scheduled the appointment and it would be 2 weeks later. What?!? Those were a long 2 weeks. During that time I googled as much as possible about Ds and found the good, the bad and the ugly. I reached a point where I could no longer see information. This is also the time
I began lurking on the Ds and Ds pregnancy boards on Babycenter.  It was really helpful to see photos and hear stories and questions from other moms.  Finding that site allowed me to calm down and carry on during the dreaded wait time.

Before the appointment with the perinatologist, I believe I already knew what our future held. I had already decided that I would not have any invasive testing. So, when 2 other soft markers were noted, I jumped at the chance to take the new Verifi™ blood test which would give us an answer with 99% accuracy in 8 days.  8 days.

I tried to keep extra busy during that wait and tried to stay off Google. But, by the time the genetic counselor called with results, I was convinced that we already knew our little one would be extra special. The results confirmed my instincts on a Wednesday afternoon. I cried as a I called  my husband to tell him that our newest son had three copies of the 21st chromosome, but this time it was driven by relief and content, not fear or anxiety.

That night, I spent more time with the BabyCenter groups and Downsyndromepregnancy.org. These truly became lifelines to me throughout my pregnancy. I felt like I no longer fit in with my birth board. We chose to not tell people other than family and close friends until our little one arrived, so that also limited my support. I had sound research and real-life experience at my fingertips, and it was incredibly comforting during this challenging time. The BabyCenter board was also the starting point for the Facebook group of moms I have grown to love and admire. Over 100 moms new to the journey of DS living life together online; it is a beautiful thing!  Without the BabyCenter Down syndrome boards, I cannot imagine how I would have come through all of this.

Owen Henry Jacob was born at 38 weeks, 5 days. We induced because the doctors believed the fluid around his heart was increasing. We welcomed our precious son on December 28, 2012. He was 7 pounds, 7 ounces and 19 ¼ inches long. And he was (is) perfect.

He was a strong nurser right away and was cleared by the NICU staff and doctors. Hours after he was born, he was moved to the NICU due to pulmonary hypertension. He started on oxygen and was doing great after a saline/blood exchange. That night he was cleared by the pediatric cardiologist (no fluid at all!). He ate very well, and after experimenting with oxygen levels, it was decided that we could bring him home with oxygen on day 6.

Today, Owen is 4 months old! Time really does fly. He is almost 16 pounds and has started rolling from back to front. His smiles and giggles are tough to capture, but they light up the room. We have had 2 ABR tests for his hearing, and Owen will be getting temporary hearing aids this month. Once his ear canals are large enough, tubes will be placed and we believe that will solve his hearing issues too.



His older siblings are in love and so are we. We are so blessed with our family of 6. I am still basking in the newborn glow (or maybe that’s sleep deprivation?!) and find solace with my other moms who have kids rockin’ the extra chromosome. The BabyCenter website and downsyndromepregnancy.org filled a huge void in my life during the very difficult time from diagnosis to birth. I am forever indebted to the women who began it all and continue to support so many moms (families) each day.

Read more from Jenny at her Blessings Beyond the Ordinary blog. Thanks Jenny!

Mother’s Day 2013: Jackie’s Story

May 8, 2013 in Blog, Book, Diagnosis, Emotions

This year we’re celebrating Mother’s Day by sharing stories from moms who have used Down Syndrome Pregnancy and the BabyCenter Down Syndrome Pregnancy board over the years, and we’ve also launched a 2013 Mother’s Day campaign to distribute copies of “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome” to prenatal genetic counselors nationwide.

We hope these stories will uplift and inspire you and let you know that you are not alone.

Jackie’s Story:

At 18 weeks pregnant, my husband, Greg, and I were so excited to head  to University of Michigan Hospital for our ultrasound and find out if we were having a boy or a girl!

We found out after a long ultrasound that we were expecting a sweet baby girl. What we didn’t expect to find out was that we had a high probability of having a baby with Down syndrome. We met with a genetic counselor and ended up having an amnio the very same day to confirm the diagnosis. We saw enough markers on the ultrasound to expect the positive amnio result we received 48 hours later.
I did a lot of online research and was eventually directed to the Down Syndrome Pregnancy board from BabyCenter.com. What a lifesaver for me! I had finally found a group of women who actually understood (and didn’t judge!) all of the feelings I had going through my mind.

Through that board I found tons of pregnancy resources, Down syndrome resources, and support from a lot of amazing women. It’s so nice to have a great group of supportive people to walk this journey with. I went from feeling totally alone in my pregnancy (even with a very supportive husband by my side) to feeling encouraged, supported and uplifted.

Today our beautiful daughter is 15 months old with the sunniest, sassiest, and sweetest disposition, and she totally rocks her extra chromosome. I shudder to imagine how my mental state would’ve fared without the resources from BabyCenter and DownSyndromePregnancy.org. Luckily, now we are able to see how we needed Lauren to complete our family … however she happened to arrive in our lives and however many chromosomes she arrived with.

We are blessed!

Sincerely,

Jackie

We’d love to hear more stories from other moms, so please share in the comments or send your story/photos to stephanie.meredith@uky.edu.

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.

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

Blogs: Information and Inspiration

February 2, 2011 in Blog, Resources, Support

To all of our expectant parents, we present Missy’s blog roll.  Beyond just a list of Down syndrome-related blogs, Missy has explained each blog in a nutshell.  Our expectant parents can peruse this list, looking for bloggers who share their beliefs, cultures, interests, or whose children have experienced the ancillary medical issues discovered in an expectant parent’s unborn baby. If you see a blogger who has received a prenatal diagnosis, often you can search back through blog posts to see what they were thinking at the same stage of gestation as you. 

This may inspire you to blog as well.  Often moms are feeling so raw that they don’t want to share, but sometimes writing and sharing can be a very cathartic experience, and may in turn help another parent.  Happy reading!

Added note: Missy will have a larger, beyond Baby Center blog list to which we will link.  If you have a blog, feel free to put the link here  on a comment, with a description (similar to the descriptions on the list), and we will put it on the list.  Thanks!

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).

People are talking

October 22, 2010 in Blog, Book

We love the chatter we’ve been seeing about our book and website on facebook, e-mail, discussion boards, and blogs.  The more you talk about us, the more likely expectant parents in need of information will find us.  So please, keep talking!  If you would like to see what some people are saying, take a look:

Jennifer Margulis over at the Mothering blog talks about our Stephanie Meredith, both as coauthor of Diagnosis to Delivery and executive director of Lettercase.  She also talks about the new prenatal testing on the horizon.

Special Needs Children Editor Pam Wilson of Bellaonline discusses the new resources for parents, including our website and book (which she calls “outstanding!”) and Stephanie’s booklets available through Lettercase.

One Speech and Language Pathologist at the Thomas Center for Down Syndrome in Cincinnatti, blogs that our book is “absolutely outstanding.”  She goes on to list a variety of people who should read our book, including medical professionals and students.

Nancy McCrea Iannone’s local newspaper published an informational piece on the book and website.

Gillian Marchenko is spreading the word on the Chicago Special Needs Parents Examiner.

And speaking of parents, they are sharing through their blogs.  Here is a sampling:

Our photographer Kelle Hampton (“The individuals who created it passionately put their hearts and souls into something that is beautiful, informative and, I imagine, an incredible guide in navigating the intimidating waters of the first steps of acceptance.”)

Our photographer Conny Wenk (“CONGRATULATIONS, Nancy and Stephanie for putting so much work and effort into this invaluable book!!!)

Bill and Ria (“wonderful, incredible, comprehensive . . ., practical, compassionate, . . . and easy-to-follow”)

Barbara Curtis at Mommy Life

Becca at the Bates Motel (“amazing, long over-due”)

Jess at Raising Joey

Erin at Ski’ing Through Life (with absolutely gorgeous photo of Grady and his dad) (“I wish I had this when I was pregnant.”)

Jennie at A Little Something Extra for Us (“FABULOUS”)

Qadoshyah at Got Down Syndrome (with some extra cute Kelle Hampton and Conny Wenk photos)

Our friends on the other side of the world are also talking.  Keeping Up with Down Syndrome is a blog for the Down syndrome group in New South Wales, Australia.  (Even if many parts are not relevant outside of the U.S., it is still “good, well researched information.”)

Keep the conversation flowing!  And bring some of it to our blog – our expectant parents could benefit from a variety of perspectives.

Down syndrome Blogs