Orion's story

Little did we know that April 20, 2016 would forever change our lives for the better. That is the day we discovered we were expecting Orion. Due to my significant fertility issues, we were unsure if this would ever be a possibility. Then began our incredible journey with our tiny miracle. As you can imagine, we anxiously awaited the first trimester scan to tell the world our exciting news. Somehow the appointment was not scheduled correctly so we were only slotted for a basic checkup. We were devastated to say the least. This day was so important, it was everything. There was no way we could go home and not see or hear our miracle baby. Luckily they were able to send us downtown to the main hospital later in the day to get the ultrasound. At this point, we would have traveled to Bermuda to know our baby is healthy. The scan started full of excitement with lots of talking and laughter but silence eventually took over. I couldn't help but notice the Tech measuring the same spots over and over for what seemed like forever. I knew something wasn't right so I asked but she couldn't tell me. The doctor came into the room and explained that our baby had a 96-99 percent chance of having Down Syndrome due to the nuchal translucency measurement (fluid on the back on the neck). So many emotions hit us like a ton of bricks at that moment. There was never a doubt that we wanted this child, special needs included. The newfound information did dampen our spirits with worry. We were scared of the unknown and needed so much more information before announcing it to the world. The following day, I met with a genetic counselor and took the Cell-Free DNA test. A week later, it was confirmed that we were having a beautiful baby boy with Down Syndrome. We are so thankful for early detection that can be attributed to the original scheduling error. We received and continue to receive the very best care at Johns Hopkins in Baltimore, MD. Between 16-20 weeks, multiple heart defects were discovered during ultrasounds. This is very common with DS babies. With such a wonderful medical team and technology, we were carefully monitored until 33 weeks when Mr. Orion decided it was time. He was born via emergency c-section on November 17, 2016 at 2lbs 10oz and 14 inches. He was immediately taken to Cardiology to check the severity of his heart defects. Fortunately, immediate surgery was not required. The next seven weeks were spent in the NICU watching our tiny warrior beat the odds. So many amazing doctors and nurses cared for Orion day in and day out. They became our extended family. They taught us how to care for our tiny fighter. How to administer medications, how to bathe him, feed him and be confident new parents to such a fragile being. Words cannot express the gratitude. Orion was released on January 5, 2017. We were overjoyed to finally head home and figure out this whole new family dynamic. The upcoming months consisted of multiple specialists and many appointments. Once he reached a healthy weight, the VSD repair was scheduled at 5 months of age. It was a complete success!! Although Orion has needed multiple surgeries and procedures, he continues to beat all the odds. He is a true warrior. Orion is now thriving, bursting with personality and a smile that can light up any room. He brightens the day of anyone he comes in contact with. We truly are one of The Lucky Few.