They are the words that no one is ever prepared to hear about their baby: we believe the baby might have Down syndrome. But millions of parents hear these words, parents of every age, race, and creed. They were spoken to me while I was still pregnant, and after an amniocentesis at 15 weeks, that belief was confirmed.
I was lucky enough to have an amazing doctor who was supportive of my decision to keep my baby and never pressured me to have an abortion. I was lucky enough that my doctor had up-to-date information about Down syndrome rather than outdated, inaccurate stereotypes, and that he was willing to help me find resources and support groups. Unfortunately, not everyone has this kind of experience.
How do we change that? What can we do to make a difference?
One of the best things to come out of our Down syndrome diagnosis — besides my son, of course! — was the community of families out there that I was able to connect with. Having groups of people that are there for you, that know what you’re going through and understand, is invaluable. Because of this community, I have friends literally all over the world, people that will be there if I am feeling sad, or scared, or lonely.
It started online, with Down syndrome diagnosis forums, and soon moved to Facebook. Private groups were set up for moms whose children with Down syndrome were born in 2012 or 2013. It was so successful, and so helpful, that these groups quickly exploded. Soon there were little communities for more and more age groups, for parents who had a prenatal diagnosis, all of them which had one thing in common: parents who were searching for, and needed, understanding. Empowerment. Empathy. These birth-club type groups provide a lifeline to parents who may feel like they’re drowning, and a connection when it’s so easy to feel like no one can understand. And out of those support groups, where so many good friends were made, came the Down Syndrome Diagnosis Network.
The mission of the Down Syndrome Diagnosis Network is to support families with accurate information and real-life accounts of Down syndrome, whether they’ve received a prenatal diagnosis, chose to wait it out, or were surprised with a diagnosis at birth. DSDN also strives to improve how the medical community treats Down syndrome by emphasizing accurate, unbiased information — a far cry from the doom-and-gloom that too many families currently get handed.
Too often, we see the insanely high rate of abortions of babies with Down syndrome, or incidents like the murder of Ethan Saylor, and ask how we can make a difference. DSDN can help to do that. And all it took was eight extraordinary women, women that I feel so incredibly blessed to know, who knew that something had to change. DSDN gives families access to a medical feedback program, physician guides on how to discuss Down syndrome with their patients, access to local resources and support, an amazing online community and more. There’s also a free e-book filled with stories from mothers around the world who have walked this same path.
So today, on World Down Syndrome Day, help us make a change. Families don’t have to feel like they’re alone. They don’t have to feel like their lives are over. All it takes is the chance for them to be informed, to find connections, and be supported. And the Down Syndrome Diagnosis Network can do just that.
