Did you know that October is Down Syndrome Awareness Month? There are over 400,000 living with Down syndrome in the United States. Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. It wasn’t until June 24, 2010 that I really learned about Down syndrome. It was the day after my Molly was born.
The morning after Molly arrived, her doctor came to us and let us know there were some red flags that she may have Down syndrome. The doctor suggested that the only way to know for sure would be to have some genetic tests done and that it would take up to two weeks to get the results. In the meantime, we secured appointments with a pediatric cardiologist for more tests and a pediatric genetics clinic. Many children with Down syndrome have heart defects, however the EKG and other tests showed no abnormalities with Molly‘s heart. Two weeks after she was born, we received confirmation that she did in fact have Down syndrome. This came as a complete shock to us, as there is no family history and my pre-natal tests showed that there was a very low risk of any problems. Research shows that a healthy 31-year old mother has a 1 in 900 chance of having a child with Down syndrome… and I was chosen as “the one”.
Molly has had her share of doctor’s appointments the past three months (with many more to come) and she is already showing signs that she is a tough girl. Many babies with Down syndrome have a tough time eating and sleeping and she has shown no signs of any troubles. In fact, she eats and sleeps a little too well. Doctors have pointed out abnormalities to us and explained the steps we need to take in order for her to receive the best therapy possible. They’ve stressed to us that we raise her as a typical child, just as we have raised her older sister Maggie. We’ve buried ourselves in research trying to learn everything that we can to ensure that Molly is getting the best help available. I’ve contacted the Down Syndrome Association of Jacksonville and they have been a great resource for us already in just this short time. We are also working with Hope Haven Children’s Clinic and Family Center, who is providing Molly with some fantastic therapies. As a family, we are learning new things about the disorder every day. One of the most important things we have learned is that people diagnosed with Down syndrome go on to lead extremely rewarding lives. We are determined to make sure that Molly does too.
Now that I’ve shared the big news – a few ground rules, if you don’t mind. First off, please know that we are okay and the worst thing you can do is tell us that you are sorry. We are not sorry. We’ve been dealt our hand and while it is tough to grasp at times, we are okay. Things may be a bit of a challenge for us from now on, but we are ready to raise our girls in the best environment possible and with every resource available to us.
While everyone deals with news of this manner differently, please know that I’ve found it VERY helpful to talk about it. I may cry a little, but please don’t shy away from contacting me. I’d love to share with you what I’ve learned so far, if you have questions. If you’d like to research on your own, I encourage you to visit the National Down Syndrome Society’s website. I also encourage you to check out this website too. It helped us in learning how to share the news and to prepare Molly’s birth announcement.
And as I promised last week….here is her birth announcement (Yes, I removed our last name…safety first, people. This is the internet we are talking about here.) We are very proud of it (and Molly!) Isn’t she a cutie?!
Do you have a personal connection with Down syndrome? I’d love for you to share it with me.