"Oh my goodness, something is wrong." Nick and I were sitting in the waiting room, ready to see the genetics counselor who wanted to visit with us immediately after our first trimester prenatal screening. I knew this immediate visit was not a normal routine. It was only a few short months earlier that I had the same first trimester screening done in a prior pregnancy. At that time, there was no visit -- only an email several days later stating the results were "normal".
I now realize how sad it is that the results are delivered as normal or not normal.
And, that having an extra chromosome falls into the "not normal" category.
That "normal" pregnancy ended in a miscarriage at 14 weeks. So as we sat in the waiting room, I feared for what was to come. I thought we were going to lose another baby.
The geneticist shared the results from our prenatal screen and explained there was a 1 in 5 chance our baby had Down Syndrome. The geneticist was neither positive nor negative in sharing the screening results -- she was just sharing "facts". At the time, all I could think about were the scary statistics of loss she shared related to carrying a child with Trisomy 21. My heart was still broken from losing a baby just a few months before - I couldn't bear to lose another.
A week later, we had a positive NIPT screen, which is a non-invasive prenatal test that analyzes the a baby's DNA from the mother's blood. We turned down further diagnostic testing because of the risk of miscarriage. In subsequent ultrasounds, there were additional markers for Down Syndrome -- two cystic hygromas, a heart defect, and enlarged liver and spleen.
I accepted right away that my son had Down Syndrome, but I didn't really know what that would mean for our family.
After our first visit with the geneticist, I was given a few resources (brochures, local resources, a book) on Down Syndrome, all of which were only semi-helpful and a bit overwhelming. I wanted to learn more about Down Syndrome so that I could feel prepared. But for me, the best way to do that wasn't through reading (although I did a lot of that, too), but through first-hand experience -- I needed to connect with other families and individuals with Down Syndrome.
Through a friend, I was connected to my "first" mom of a child with DS -- Andrea. Andrea was a wealth of information and support for me. Shortly after we were connected, Andrea sent me an article on breastfeeding babies with DS and I loved what the author had to say, so I reached out to her. Joelle is from Australia and her daughter Josee is another beautiful little girl with DS.
And from there, my network exponentially grew. Joelle connected me to Jen from Des Moines. Jen connected me to the DS diagnosis network, an online community of expectant moms all carrying children with Down Syndrome - wow! http://www.dsdiagnosisnetwork.org I also connected with our local Down Syndrome community and quickly made new friends.
Connecting with other families was the best decision I could have made. I met family after family that were living totally ordinary lives. Their lives enriched because of their child with Down Syndrome. Of course there are challenges at times, but that never seemed to be the focus (and really, what family doesn't have challenges?!).
These connections really made a difference in feeling prepared and excited for our little one. Not only did I get a real perspective of what life is like raising a child with Down Syndrome (ordinary -- more UPs than DOWNs), but also a new community of people that share experiences, offer support and love, and live life together. Moms and dads that love their kids just as they are. A community I am honored and proud to be part of.
Sharing Our News
Right around 20 weeks into the pregnancy, we felt we were far enough along to more broadly share news of our pregnancy and the Down Syndrome diagnosis. I knew that people would respond based on my attitude and demeanor. So I chose to be positive, optimistic, and celebrate my baby. Here is how we shared our news.
As expected, our friends and family rejoiced and celebrated in the newest addition to our family. Positivity was met with Positivity!
There is so much truth to those words, especially now that he is here.
He is loved. More deeply than I could have ever known.
He is unique. And we wouldn't want him any other way.
He is ours. And we couldn't be prouder!
If you have recently received a pre-natal or birth diagnosis of Down Syndrome on your child, take some time to get connected into your local DS community (if available) and online. There are so many great resources. And please, reach out to me. It just takes one connection to blossom your network.