Between online forums, Facebook, Pinterest, etc., there are many online resources to provide a sense of community and meet some of the unique needs of pregnant moms expecting a baby with Down syndrome. These interactive online communities can help expectant parents who might have questions about medical issues, sharing the news with friends and family, or who simply want to share the excitement over ultrasound and newborn photos of their little ones.
Nancy Iannone, Co-Author of Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome says, “What we hear most often from pregnant moms is that one of the biggest issues is that feeling of isolation even when surrounded by friends and family … because there’s no one around you who has been through that experience of receiving a prenatal Down syndrome diagnosis. So, many parents find it helpful to get support from others who have been through a similar experience or who are going through the experience with them.”
There are a number of interactive communities, and some parents opt to pick one that meets their needs while others use all of them to be surrounded by support.
See Also: Getting More Support chapter in our book, “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome.”
One of the most robust online forums for those receiving a prenatal diagnosis of Down syndrome is the Down Syndrome Pregnancy BabyCenter board. The board was created in 2006 and has almost 1600 members. The group “owners” are original Down Syndrome Pregnancy founders Nancy Iannone, Missy Skavlem, and Amy Geoffrey who are all moms who received a confirmed prenatal diagnosis or high chances with blood tests, and they are leaders in the Down syndrome community. They provide researched information and support for pregnant moms in response to specific topics and questions and also connect pregnant parents with other parents who have faced similar medical issues, who have similar beliefs or backgrounds, or who live in the same geographic areas.
Some of the advantages of this board include the significant experience of the board moderators, the ability for users to remain anonymous or just “observe” the public conversations, and the many resources BabyCenter offers all pregnant moms. However, the online conversations can be viewed publicly unless sent as a private message, and it can be more difficult to share photos.
Other BabyCenter boards include the following:
- A general Prenatal Testing BabyCenter board with a about 600 members
- An Amniocentesis Support and Information BabyCenter board with about 1600 members
- A Down Syndrome Loss BabyCenter board with about 100 members
- The Down Syndrome BabyCenter board with about 3,500 members. The Down Syndrome BabyCenter board is also run by Nancy, Missy, and others, and this board is for all parents who have had a baby with Down syndrome. Most parents from the Down Syndrome Pregnancy board “graduate” to the Down Syndrome board after the birth of their baby because parents sometimes find birth boards irrelevant after their child is born.
Some of the Facebook communities for pregnant moms expecting a baby with Down syndrome include the following:
DSDN is an organization that provides family-centered discussion of Down syndrome, including a number of different Facebook support groups. Some of these groups are arranged as birth clubs based on the year your child is expected to be born so that you can develop relationships with other moms whose babies are due at the same time. Other groups are arranged according to common experiences, such as a dad’s group and a group for those who have experienced pregnancy loss.
Has over a hundred members and is run by Joelle Kelly, a mum from Australia who received a prenatal diagnosis. This group actively provides interactive support to pregnant moms continuing a pregnancy after learning about a prenatal diagnosis of Down syndrome.
Primarily offers information about current trends in prenatal testing, news about people with Down syndrome, and references to popular pregnancy blog posts from around the web.
The advantages of these groups are that they are private, it’s easy to share and view photos, and you can make friends with people who have revealed their identities. However, it might not suit the needs of those who prefer to receive anonymous support or who aren’t ready for groups related to Down syndrome to show up in their profiles.
Another online tool is the Sidelines National Support Network that provides “international support for women and their families experiencing complicated pregnancies and premature births.” The advantages of Sidelines are that it includes pregnant women with a diverse array of complicated pregnancies and offers many community forums; however, it is not specific to Down syndrome and does not have resources about Down syndrome.
Other options include discussion forums, Twitter accounts, and Facebook pages hosted by local groups. You can find your local Down syndrome organization with the Down Syndrome Affiliates in Action “Find an Affiliate” tool. The advantages of interactive communities sponsored by local groups are that you can get answers to local questions like recommendations for pediatricians or where to find the nearest playgroup. You can also usually remain anonymous when viewing the Facebook page or Twitter feed.
Other online communities where you can find Down Syndrome Pregnancy include Twitter and Pinterest. We usually post news articles, prenatal testing updates, and popular pregnancy blog posts on our Twitter feed, and our Pinterest boards include Baby Shower Ideas, Books We Love, Blogs We Love, Prenatal Testing, Prenatal Websites, Toys for Baby, Playing with Baby, Mom Style, Baby Style, and Great Websites.
Reflections from other parents about what online communities they have found to be helpful and what it means to get support from other moms on a similar journey.
From Deborah, reflecting on how the Down Syndrome Pregnancy BabyCenter board helped her following a postnatal Down syndrome diagnosis:
My son was diagnosed at birth, but we received a high risk assessment from the quad screen: 1 in 19. I didn’t find any forums until after Ben was born, but I love the BabyCenter group. I lurked on the Down Syndrome Pregnancy board after Ben was born – the regular Down syndrome board was great, too, but the pregnancy board was helpful because it was very focused on the questions I had with a newborn: how do I tell my friends/family? what do I need to know about Down syndrome? And there were lots of sweet pictures of newborns like my Ben. I *wished* I had done more research during pregnancy, so that I could have been a part of the board and community.