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.
Kathy Soper collected thoughts from experienced parents, and through the generosity of publisher Woodbine House, this collection of parental advice is available free on the Woodbine House website.
We do link to this booklet in our book, but an extra tidbit is that my thoughts about my daughter Gabby are recorded there. What did I wish I would have known about Gabby? Check out my quote from the booklet:
I wish I’d known that I would say and feel so often, “You’re so smart!” or “You are the cutest kid in the whole world!” I wish I’d known I would use words like “sparkling,” “vivacious,” and “infectious laughter” when describing my child. I underestimated her.
While you are over at Woodbine House, check out the amazing list of Down syndrome resources that they have available.
On March 21 (3/21), the Down syndrome community will be celebrating World Down Syndrome Day. This date is significant because it represents three copies of the 21st chromosome, and you can find out more at World Down Syndrome Day (international website). Some families take this opportunity to share information about Down syndrome with their local communities, schools, churches, doctors, or friends and family. Ideas include offering presentations, sharing materials about Down syndrome, posting links on social media, or enjoying reading a new blog — whatever is most comfortable.
School presentations: Down Syndrome Pregnancy offers a range of presentations for schools that can be helpful in preparing older siblings and their friends for the birth of a baby with Down syndrome.
Medical Presentation: Down Syndrome Pregnancy also offers a short 15-30 minute presentation for volunteers to share with medical providers on the best practices for delivering a Down syndrome diagnosis.
Prenatal Down Syndrome Resources: While all of our materials are available for free, some expectant parents like to make sure that their medical providers have printed resources on hand in case another family in the office receives a diagnosis of Down syndrome. You can order print copies of “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome” and “Your Loved One is Having a Baby with Down Syndrome” from Woodbine House, and you can order “Understanding a Down Syndrome Diagnosis” and “Delivering a Down Syndrome Diagnosis” from Lettercase.
You can also see a range of blogs that have a positive connection to Down syndrome at Down Syndrome Blogs by the T21 Writer’s Alliance. The blogs are organized by category so that you can select which blogs would be most interesting to you.
Video and Social Media:
In the past few months, the Down Syndrome Guild of Greater Kansas City has released a wonderful short film featuring people with Down syndrome and their friends discussing Down syndrome, friendship, and proper language. This is another great tool to share with friends and classrooms to introduce Down syndrome:
The International Down Syndrome Coalition also shared a World Down Syndrome Day video this past week that features images of people with Down syndrome and features the song “Who I Am” written and sung by Sarah Conant.
The first purpose of the Down Syndrome Prenatal Outreach program is to raise awareness among medical professionals about available resources and support. This is best done by establishing relationships of trust between local Down syndrome organizations and medical providers; distributing materials; doing presentations; and maintaining the professionalism of local organizations.
The Down Syndrome Prenatal Outreach program generally consists of a parent or staff contact for each OB/GYN group in the region. The Down Syndrome Representatives replicate the model of a pharmaceutical representative by visiting the OB/GYN offices quarterly to build the relationships, distribute materials, and update the stock of materials as needed. Further, the Down Syndrome Representatives offer business cards with contact information to the medical professionals and are available via telephone calls or in person.
Down Syndrome Representative training is offered to so that Down Syndrome Representatives understand the organization and focus of the Down Syndrome Prenatal Outreach program. The training also instructs parents and staff about how to act as representatives of local organizations.
We sometimes have expectant parents awaiting the birth of twins, and one or both babies have Down syndrome. If you have twins, will you help our expectant parents? How was your birth plan different? Did the logistics of a twin birth cause extra complications? Are there any differences in parenting that you see? In what ways is it more difficult? In what ways is it beneficial? If you have a blog or website that pertains to twins and Down syndrome, please share.
We will start off suggested resources by mentioning Jen Graf Groneberg’s Roadmap to Holland. Jen gave birth to twin boys, one with Down syndrome, and wrote of her early experiences.
Another resource is a blog by Eric Waksmunski, dad to twin boys with Down syndrome.
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
What resources are there for dads? How is the prenatal experience different for them (beyond the biology)?
Competitive runner and FBI agent Heath White describes how he and his wife struggled with a prenatal diagnosis of Down syndrome and then how his life changed after Paisley was born. They have run a symbolic 321 miles together, and Heath says, “I’m always gonna be there to make sure she gets to the finish line.”
Like Heath, I remember being afraid of someone teasing my son and being worried about raising him for the rest of my life. Then I remember coming to the realization, like Heath, that my son was becoming so independent I might not get to raise him for the rest of my life. Let us know, how much of their experience sounds familiar to you? What’s different about your story? Please also share any other stories or blogs you like about dads.
Another video from a father:
Expectant parents, this video treasure has been shared throughout the on-line Down syndrome community. A father speaks from the heart about those early feelings connected with hearing the news, and the progression of perspective, feelings, and knowledge. It takes only a few moments, but we think it will help you see a glimpse of the future:
(Please note that in the video the stat on divorce seems to be inadvertantly misquoted. Research does show that couples with a child with Down syndrome divorce at a lower rate than couples with typical children, but not as low as noted in the video.)
There is also a national group specifically for dads called (“Dads Appreciating Down Syndrome.”.), and about 55 local groups across the country have a DADS chapter that hosts monthly meetings to provide “safe forum for sharing, bragging, learning and growing with other fathers who truly understand.” Read more about the chapter meetings here.
Below are also some blogs by dads to give some insight into their perspective:
Eric blogs about life with twins with Down syndrome
Dad Bernard Marrocco writes in Canada’s Globe and Mail of the beautiful journey of life with his daughter Clare who has Down syndrome. He has experienced the uncertainty and fear of receiving a diagnosis, acknowledges the difficulties, and reflects on the fundamental joy of parenting Clare. It is well worth the read, especially for our expectant dads.
Please post any additional resources for our expectant dads in the comments. Expectant dads or experienced dads, please share your questions, concerns, or thoughts.
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.
$10 minimum suggested donation for book download to go toward support and future development. Thank you.
You can make an online donation by credit card, and you will be directed to the University of Kentucky Office of Development. All donations are tax-deductible and receive an acknowledgement letter, which also serves for tax purposes.
Click here to purchase a printed version of "Diagnosis to Delivery" from Woodbine House for $15 or "Your Loved One is Having a Baby with Down Syndrome" for $8.
We provide a free downloadable practical guide for expectant moms, Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome. We also host an interactive blog, which gives expectant parents a place to ask questions, voice concerns, and receive feedback.
We offer support to expectant parents who have received a prenatal Down syndrome diagnosis and are moving forward with their pregnancy. For expectant parents first learning about a diagnosis, please refer to your medical provider and Understanding a Down Syndrome Diagnosis distributed by Lettercase.org.
Please be advised that we are not medical professionals. All decisions about your care should be fully discussed with your medical care provider. This book is a resource and not a substitute for good quality medical care and advice.