What I Have Learned Since Our Down Syndrome Diagnosis
There are some days that are just seared into your brain forever — first kiss, your wedding day, that time in high school when you caught a soccer ball to the face and a super cute varsity player gave you the literal shirt off his back to soak up all the blood … and then there’s the day your OB called you and said, “I’m sorry I don’t have better news for you. Your test results came back and your baby definitely has Trisomy 21, aka Down Syndrome. Also, I’m sorry but I have to ask — are you considering terminating the pregnancy?”
At the time, my husband and I knew very little about Down Syndrome aside from what we’d seen on TV, so we trusted my doctor and followed his cues. Well, his cues led us to believe this diagnosis was one of the worst possible things that could happen, and we were devastated. I mean, he called at dinnertime just 2 days before Christmas — it was all just too much. This baby was already unexpected, and you’re telling me this Down Syndrome thing is so serious that we should actually consider terminating the pregnancy?!
After bawling my eyes out for the next hour, I got to work doing what I do best — researching every last bit of information I could find on the Internet about Down Syndrome (DS). Knowledge is power, right? I also joined a Facebook group for moms with a prenatal diagnosis of DS, as I was in desperate need of support and encouragement at that moment. I was only about 14 weeks pregnant at the time of diagnosis, so we had quite a road ahead of us. The next several months were full of doctor appointments, tests, scans, tears, and a whole lot of prayer and planning.
Through all of my research, I learned that DS in and of itself is actually NOT the worst thing that could happen. I also learned that our baby boy, who we named Jack, could actually thrive and that DS today is not treated the same as it was even 10 years ago. I learned that there is a thriving community of parents of children with DS who are advocating every single day for their children to be included and not outcast from society. I learned that we were now part of The Lucky Few, a global movement to shift the narrative surrounding DS.
Today, Jack is 16 months old, and he has brought immeasurable joy to our lives. Watching him grow and thrive has just been such an incredible experience and I don’t even know how I got so lucky to be his mom. October is officially Down Syndrome Awareness month, and I want to share some pieces of advice and things I’ve learned along the way.
- If you’re an OB who might deliver this kind of news, please educate yourself before talking to your patient. Looking back, I really think I was my doctor’s first patient with a prenatal diagnosis of DS. Aside from his overall negative outlook, he wasn’t able to answer most of my questions — I would have taken a simple, “I don’t know but I’ll find out.” I knew there would be a lot of unknowns until Jack arrived earthside, but my doctor’s lack of knowledge and effort to remedy that was kind of appalling. If not for his nurses who held my hand or offered a shoulder to cry on throughout my numerous appointments, I would have sought out another doctor.
- If you’re a parent facing this kind of diagnosis, please know that while it is daunting and overwhelming, especially in the beginning, Down Syndrome is just one part of who your child will be and does not define their entire being. As I shared the news of our diagnosis with one friend in particular, she stated, “How fortunate that you already get to know a little piece about Jack. There are so many things we don’t find out about our kids until later on, but here you already get to know something about what to expect with him!” Her comment really helped change the way I thought about Jack and Down Syndrome as a whole.
- Consider counseling for you and your partner. One of the first things my husband suggested was marriage counseling. While we weren’t having any major struggles, he wanted to make sure our marriage was as strong as it could be before Jack arrived. It turned out to be a really good thing for us.
- Join all the groups, both on- and offline, and do all the things — when you feel ready. It’s okay if you not ready to celebrate on World Down Syndrome Day (March 21) or even during Down Syndrome Awareness Month, but reach out and start to get involved with your local organizations and Facebook groups. Some of my favorites include:
- Gigi’s Playhouse New Orleans – offers free programming for infants through adults with Down Syndrome
- The Lucky Few – check out Jack’s series from their stop in New Orleans on their storytelling tour last year
- Down Syndrome Diagnosis Network – they have established groups on Facebook that are well-moderated and truly an amazing source of legitimate support and information
- Down Syndrome Association of Greater New Orleans
- Upside Downs – Based in Thibodaux
- UP21 Foundation – Based on the Northshore
About the Author
Christina lives in Metairie with her husband, Marc, and their 4 kids – Karinne (12), Ryan (10), Elizabeth (6), and Jack (1). Christina received her degree in International Studies in 2006, and after more than a decade she decided it’d be a great idea to go to nursing school with 3 kids in tow. She graduated from LSU Health Sciences Center with her BSN in 2020, and worked as an ER nurse for 3 years before recently accepting a position in ICU. In her minuscule amount of free time, Christina can typically be found sipping an iced mocha and strolling through Target.