We were beyond thrilled to be expecting a second son, due May 2014. Our older son was five years old, and we had been trying to grow our family for a couple of years. During our routine 20 week anatomy scan the ultrasound tech commented that she couldn’t get all of the needed images and referred me to a maternal fetal medicine specialist for the following week. We went into that appointment with no fear or concerns just assuming that more images were needed. During that long ultrasound the maternal-fetal medicine doctor told us “there is something very wrong with your baby’s heart.” He then explained that our baby had Hypoplastic Left Heart Syndrome and described a bit about what that diagnosis meant. He then referred us to go see a pediatric cardiologist the next week for an echo cardiogram and definitive diagnosis. Our heads were spinning. How quickly we had gone from elation to panic. I remember looking blankly at the piece of paper with Hypoplastic Left Heart Syndrome written on it and just staring at those unfamiliar words. Over the weekend we spent many hours researching and learning about HLHS in preparation for our appointment with the pediatric cardiologist. We wanted to know what questions to ask. As high school English teachers, we had a lot to learn. After an echo cardiogram that took well over an hour the pediatric cardiologist confirmed the complete/severe HLHS diagnosis. We asked many questions about surgical options, our baby’s quality of life and every other inquiry we could think of as it pertained to what the reality of the diagnosis meant for our son and our family. We left that appointment in utter shock, trying to process what this diagnosis meant for our precious son. The more we read about the surgeries that attempted to temporarily keep his heart going the more I realized that I could not ask my son to “fight” a battle in which he would never win or get better or be cured. We couldn’t do that to Silas. We couldn’t ask him to do that. It was too much, way too much. We then put all of our focus on giving Silas the best life we could with his diagnosis. For us, that meant no medical intervention. Based upon our research, our faith and our ethical concerns, we said just because it can be done medically doesn’t mean it should be done medically.
Silas lived an amazingly beautiful yet tragically short 56 hours in the arms of those that loved him deeply. All he knew was love. He had no medical interventions and knew no pain. We took hundreds of pictures, read books to him, his big brother blew bubbles for him to see and Silas was snuggled with kisses his entire life. Our lives have forever been changed by HLHS. My husband and I knew we had to make the best decision for Silas, our older son and our family. It will never be an “okay” decision that we had to make. There is nothing okay about the choices we had to make. Deep in my soul, I am certain we gave Silas the best life we could with his terrible diagnosis. We will cry a thousand tears missing Silas, so that he never cried, and for this I am beyond grateful.
~Courtney, Silas’ mom