The best gift Erik and I have ever been given came on May 12, 2010. Our beautiful little boy, Nathan, was born 3 1/2 weeks early. Although we were not completely prepared to welcome him into the world that early, it was a wonderful surprise. What we weren’t expecting was a suggestion that he might have Down syndrome. A blood test was done right after he was born and we spent 5 long days waiting for the results. Erik and I declined all genetic testing while I was pregnant because regardless of the outcome, we were going to keep our baby. However, that did not prepare us, two young parents, for this diagnosis at birth.
Looking back, this diagnosis should not have completely surprised us. At 20 weeks we were sent for our regular sonogram to make sure that the baby was growing properly, etc. The technician could not find the whole septum in Nathan’s heart during the sonogram. This led us to a fetal echocardiologist the next day, which was an appointment that lasted almost 2 hours while he tried to find all of the pieces of his heart. When he couldn’t see everything, he took us into a room and explained that he had could possibly have two heart defects. One was not much of an issue if it was by itself, but the lack of the complete septum led him to the conclusion that Nathan might have Down syndrome. About 50% of babies born with Down syndrome have heart defects. Of course, this terrified us and we were told to return a week later because the baby might move in a different way and he might grow big enough to show something more. When we went back a week later, it took all of 15 minutes for the technician to find the complete septum, while the other minor defect remained. This took the idea of him having Down syndrome right off the table for us and we never gave it another thought.
Back to his birth…because he was so early, they whisked him away to the NICU where he spent 6 days to make sure that his body temperature regulated on its own and that his jaundice subsided. The nurses in the NICU were angels and we still visit them to this day. After the blood test results were completed, the NICU doctor contacted us by phone. I can’t say that either of us were prepared for the words he spoke to us that day. It was confirmed, Nathan had trisomy 21, or more commonly known as Down syndrome. Our world was completely turned upside down. We were both devastated by this news, but we loved our little boy more than anything. The next few weeks were hard and we learned a lot. Our family and friends supported us and continued to love Nathan regardless of the news.
Nathan has given my life a new purpose. I look at people in a different light. I’ve learned that priorities change and many things I thought were so important before, really don’t matter as much. I have learned to stop judging others simply because I don’t understand or choose not to understand. I have been on a crusade to take the ugly “r” word out of everyday conversation and to teach “people first” language. This diagnosis has brought me many new friends, even if they are only online. It has opened up new doors for my family and myself. It has definitely not been easy, but it certainly has been worth it.