A decision to share the news can be a difficult one for some expectant parents. Some tell without a plan, while others craft their message. They often have to decide what to tell loved ones, how to share the news, when to tell, and what to say. Sometimes the reaction is positive, and other times they wish they had said something differently. Below we have a sample letter for you to copy and edit to suit your circumstances and personal reflections.
Our Resources
We also have a booklet for your loved ones, “Your Loved One Is Having a Baby with Down Syndrome,” that can help friends and family understand the diagnosis better and can help them learn some ideas for supporting you.
See also: Sharing the News with Friends and Family chapter in our book, “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome.”
More Resources/Articles
New Baby Diagnosed with Down Syndrome–What Do I Say (Part II)? from Living in the Light
Dear Friends and Family by PixleyDust
Birth Announcements for Babies With Special Needs
Down Syndrome Awareness Month – The Story of Our Daughter Molly
Sample Sharing the News Email
In our book, we outline some suggested guidelines for an e-mail to your loved ones telling them that your baby has Down syndrome. We have created a generic e-mail below based on those guidelines and provided some useful links for your loved ones. We suggest that you copy this on to your computer and alter it to suit your circumstances.
Dear Friends and Family,
Hello and I hope this e-mail finds you all well. As you all know, we are expecting our baby on DUE DATE. We have learned that the baby is a BOY or GIRL, and we have named HIM or HER NAME. We are so very excited about this addition to our family. (Add any personalized details you want to share.)
We have recently learned that our sweet baby has Down syndrome (and whatever ancillary issues if any). We learned the results through a genetic test called an AMNIOCENTESIS or CVS, which is virtually 100% accurate (and the testing which revealed the ancillary issues, such as an echocardiogram).
Of course this news has left us overwhelmed. We are still adjusting. If you see us, we may still be showing signs of shock, but we have learned from other parents that we will move away from this time of turmoil to a place of excitement and amazement. One thing we know for sure: we love our baby BOY or GIRL, and we hope you will join us in welcoming HIM or HER.
We know that you must have many questions, and we will try our best to answer, but we have a lot to learn in the next few months about Down syndrome. We have already started to research, and you can look at DownSyndromePregnancy.org for some basic information for friends and family. They even have a booklet just for you, “Your Loved One is Expecting a Baby with Down Syndrome.” Some of the most important things we have learned are that each person with Down syndrome is a unique individual, and that recent advances in medicine, education, and acceptance have greatly improved the lives of people with Down syndrome. More importantly, we have learned that our SON or DAUGHTER will live a rich and rewarding life, and will enrich ours as well.
We know many of you may not know what to say to us when you see us — and we understand. We’re not sure we would have known what to say either. We would appreciate if you could avoid saying, “I’m sorry.” We have heard from other parents that they hear this a lot, and it tends to hurt after awhile. We have listed a few websites below which might help.
We will keep you updated about any issues that come up and when little NAME arrives. Thank you all so much for your love for us and for welcoming our little one.
With love,
Websites:
DownSyndromePregnancy.org (includes the booklet “Your Loved One is Having a Baby with Down Syndrome”)
NDSS (National Down Syndrome Society)
NDSC (National Down Syndrome Congress)
Down Syndrome Online (by DownsEd)
Lumind Research Down Syndrome Foundation
Down Syndrome Diagnosis Network
Stone Soup “What to say” (A helpful blog post)
