Expecting a child is an exciting time, no matter if it is your first, or (I would assume) even your tenth. Though, if God chooses to bless us with ten children I’m sure I will also have other words in addition to “excited” to describe my emotions! In May of 2014 my husband, Tyler, and I found out we were going to be parents. We were excited and anxious at the same time. We had lost a baby to an early first trimester miscarriage just a few months prior, and the fear of losing this second baby pressed on our minds daily.
As the weeks passed, several ultrasounds confirmed a perfectly formed little baby who kicked up a storm. My doctor assured us that everything looked wonderful. Fear was slowly replaced by a sense of peace as we raced towards the halfway point of my pregnancy. At our 20 week anatomy scan nothing could have prepared us the hear the words, “There’s something wrong with your baby’s heart.” We were shocked. Nobody in our family had ever been born with a heart defect, or any defect. We both came from a long line of robust, fat, happy babies! How could this happen to us? I tried to do everything right. I took prenatal vitamins, drank more water than I ever had in my whole life, and took walks every day. I didn’t smoke, drink, or eat any of the whole laundry list of “risky” foods during pregnancy. Why did this happen?
The short answer we found out is that most heart defects have no known genetic or environmental cause. This was true for Calvin’s complex heart defect. Our amazing pediatric cardiologist explained his condition to us just a few weeks after his initial diagnosis. He had Tricuspid Atresia, meaning there was no Tricuspid valve leading to his right ventricle, causing it to be severely underdeveloped. He also had Transposition of the Greater Arteries, meaning his Pulmonary Artery and Aorta were reversed in their placement. Oddly enough, his two other main defects – large holes between the upper and lower chambers, were working to his benefit. The holes were allowing oxygenated blood to flow freely between the chambers and be pumped to his body.
We learned at this appointment that our baby would need three heart surgeries to have a chance at life. He would essentially only have half a heart, but if all went well he could possibly have a somewhat normal life. “Somewhat normal,” those are sweet words after weeks of imagining the worst. We still had a long road ahead and little did we know Calvin’s heart had more surprises in store.
At our second prenatal cardiac appointment, the doctors told us that Calvin was growing and developing right on target with the exception of one thing. His aorta had not grown in the four weeks since our previous visit. This meant the game plan had to change. Instead of Calvin going home after birth and having his first surgery (the BT shunt) at 3-4 months old, he would need surgery much sooner. His aorta was so small it would need to be completely reconstructed using a surgery technique known as the Norwood Procedure. We were told the surgery had an 80% survival rate and that Calvin was a strong candidate for a positive outcome. My mind immediately converted the statistic from an 80% survival rate to 1in 5 children die. We were devastated.