When someone tells you that your unborn child will not make it to delivery due to a Critical Congenital Heart Defect (CCHD), you feel helpless. You feel as though there is nowhere to turn because nobody knows what you are going through. Family and friends are wonderful and supportive, but if they haven’t walked in your shoes, there is a comfort they cannot provide. Our son Samuel, who turned five in September 2015, was that unborn child. He was diagnosed in utero with several CCHDs, namely an interrupted aortic arch, a Hypoplastic Left Heart Variant, Double Outlet Right Ventricle, and a stenosed mitral valve. Basically, Sam would be born with a detached aorta and half of a heart. This diagnosis, mixed with some then-unexplained fluid under his skin, led doctors to tell us that Sam would not make it to delivery and if he did, he would not make it through the first in a series of three life-saving open-heart surgeries. Furthermore, if he did make it through that first surgery, he would have a bad quality of life and might not live long. The doctors were so sure of Sam’s diagnosis — and his ultrasounds and fetal MRI did not disagree — that they recommended not doing surgery. These were the hardest words to hear, as we translated them into: “I’m sorry; you have no choice but to let your child die.” We are strong in our faith, however, and we prayed hard for Sam’s peace; whatever that was. In the weeks leading up to delivery, the hospital team helped us put a Comfort Care plan in place for the hours, and possible one day, that we would get to spend with Sam after birth. We even visited a funeral home and made arrangements for Sam’s passing. It wasn’t until four days before we were set to deliver him, when the doctor ordered one last ultrasound to check Sam’s position, that we received our true miracle. Fast forward past 22 extra people in the delivery room with nothing to do when Sam came out screaming, 3 open-heart surgeries (the first at 2 days old, then 6 months, and 2 years), and a total of 3+ months in the hospital—most of it in the Cardiac ICU—and we have this wonderful, happy, fun, bubbly peanut of a pre-schooler who fought for every breath he took and is now the epitome of happiness and love. His half of a heart is uniquely magnetic, and he is rarely passed by without giving and receiving a smile, even from the grumpiest of people. We have learned from Sam to take every day as a special gift and when riding the life-long CHD roller coaster take the dips one at a time and live life to the fullest while on the peaks.
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