This week I’d like to introduce you to Megan! She has the most adorable baby girl who is getting stronger and stronger each day! I am so glad she was willing to share her story with all of you!
Our precious girl, Bridget Regan, was born December 5, 2016, but her story began long before that. I was just out of my first trimester when on June 30, 2016, I got a call that would forever change my life. I opted to have NIPT (non-invasive prenatal testing) for no other reason than the test was 100% covered by our insurance. I can promise you that had this test not been covered (it can be quite expensive), I would not have had it done. Without giving it much thought, I figured the test would completely rule me out as a carrier for any kind of disorder or disease; I literally never gave it a thought that my baby may come back with an abnormal test result. Early that June morning, I got the call from my OB that my NIPT testing had come back as high risk for Down syndrome. Even with this news I figured, “oh ok, but what does ‘high risk’ really mean? And I’m sure these test results have false positives all the time…” As the news started to sink in, I scoured the internet for stories of false positives. There were a few, but I quickly realized that the new NIPT testing was far more accurate than the Quad screens of days past. A knot grew in my stomach and in my throat as the reality of what I may be facing quickly hit me like a brick wall. My OB scheduled an appointment for me at a Maternal Fetal clinic to do a full body scan that day.
I remember the feel of the leather of the couch in the genetic counselor’s office. I remember what she wore, what I wore, the art on the wall, the carpet underneath my shuffling feet, the path down the hall we walked as I felt the tunnel vision closing in on what she was about to tell us. Our baby had a 91% chance of having Down syndrome. She asked us a myriad of questions that no new parent wants to face – did we know anyone with Down syndrome, any history in our families of genetic disorders, and finally the very worst of all – how would we proceed with this pregnancy. Until that question came, I wasn’t listening to all the words she was saying. It’s like I could see the words coming out of her mouth but my heart was in a tailspin of emotion and my mind was trying to catch up with my heart. What did she mean what would we do? This was our precious baby and though the news was heavier than I could have ever imagined, there was no “option” for us. This life was ours to raise and protect to the best of our abilities and not to be discarded based on a preconceived notion of a diagnosis. Our baby is more than worthy.
Following that conversation, we had a full body scan ultrasound where a heart condition was discovered that all but confirmed the diagnosis. Then a brand new fear crept in as they explained that our baby’s condition was so severe that it would require surgery within six months of life. We’ve been closely followed by cardiology teams since then and Regan is expected to have surgery sometime in March.
Our sweet Regan has now been in our lives for exactly two months and suddenly I couldn’t imagine a world without her. She is gaining weight like a champ and her sweet disposition makes me so proud to call her mine.
Throughout this journey, I’ve had the pleasure of following other mommas and families of these precious children with Down syndrome. What started as a scary diagnosis opened a window into some of the most supportive and compassionate people I’ve (virtually) met. These first few months with Regan have been such a joy but certainly not without their difficulties. I imagine Regan’s future will be the same: filled with happiness and some stumbling blocks, but I can’t wait to see what it holds for us. The fear of the unknown is washed away when I look into her precious blue eyes and know she’s already changed my heart forever, and I know she’ll change the rest of the world’s hearts too.