On New Year’s Day 2003, I took a pregnancy test and was delighted to find I was pregnant, after nearly two years of fertility issues. My husband and I anxiously awaited our 18-week ultrasound to “see” our baby for the first time. Unfortunately, this much anticipated day turned out to be the day that would change our lives forever. The ultrasound technician detected a problem with our baby’s heart, and he scheduled a fetal echocardiogram for us at Children’s Hospital two days later. During those agonizing 48-hours, we waited and prayed and convinced ourselves that the technician had made a mistake.

But the cardiologist who performed our fetal echocardiogram confirmed that our baby had a heart defect called Tricuspid Atresia. She was very upbeat about the diagnosis and calmly explained that our baby would need several surgeries, that he would never be an Olympic athlete, but that he would probably live a mostly normal life. Of course, there were no guarantees and the surgeries each had significant risks. But, as we meet other families who were given a much more grim prediction for their “heart child,” we are very grateful that we were presented with such a positive outlook from the very beginning.

Jacob Paul Wagner was born by emergency C-section in the early morning hours of Sunday, August 24, 2003. Since we already knew about his heart defect, he was whisked away moments after we heard his first cry and looked into his face for the first time. Jacob was brought to Children’s Hospital for specialized medical care and observation.

Jacob has Tricuspid Atresia, which means that his tricuspid valve never developed, consequently causing his right ventricle to be underdeveloped. In essence, he has only half a heart – the left half of his heart is functional while the right half of his heart is not. He also had several additional defects – a large Ventricular Septal Defect, Atrial Septal Defect, Pulmonary Stenosis and reversed ventricles. Jacob’s cardiologist explained to us that upon his birth he would have either too much blood flow to his lungs, which would require a surgery to put a band around his pulmonary artery, too little blood flow to his lungs, which would require a surgery to create a shunt to bring more blood to his lungs, or just the right amount of blood flow, which would allow him to skip his first surgery. Very fortunately, Jacob fell into the last category and came home with us five days after his birth without any surgical intervention.

At two months of age, Jacob required a cardiac catheterization to open his ASD and increase the flow of “pink” blood returning from his lungs. At six months, Jacob had his first open heart surgery, called the Glenn procedure, which began the process of redirecting all of his returning “blue” blood directly to his lungs without going through his heart first. At three years of age, Jacob had his last planned open heart surgery, the Fontan, which completed his new “passive” circulation.

Unfortunately, Jacob’s story would not be complete without mentioning his lifelong struggle with reflux and eating issues. He has made tremendous progress but Jacob still has a hard time eating, lacks a desire to eat and gags very easily on difficult textures or large pieces of food. With the help of some very talented and patient therapists and other medical professionals, as well as Jacob’s courage to keep trying, his eating does continue to slowly improve.

Today Jacob is a happy, healthy little boy who loves playing with his toy cars and trains. He is very affectionate, sensitive and loving. He is also a little rascal who loves to cause trouble and torment his little sister. He is very active, and aside from getting a little more out of breath than a heart-healthy child would, he is a very “normal” little boy.