“First,” he said, “I want to show you how a normal heart works.”
As we sat in the hospital nursery, the pediatric cardiologist placed a diagram in front of us on the table. Normal heart? That meant Ryan’s was…not normal.
Two days before, after a wonderful pregnancy and an unmedicated delivery that left me feeling like a superhero, our son arrived on this earth. And here we were, a few hours from the time we thought we were going to be discharged, straining to focus on this biology lesson, complete with illustrations.
“This is what your son’s heart looks like,” the doctor said, presenting another diagram, which he laid over the one of a normal heart. My husband clutched our swaddled Ryan to his chest while I began gulping for air, trying to hold back the sobs in my throat so I could attempt to absorb what was being told to us. Our precious baby boy, not even forty-eight hours old, had a heart defect.
When you’re pregnant, you hear about—and get tested for—all sorts of illnesses and conditions: Down Syndrome, cystic fibrosis, spina bifida. Depending on your state of mind and the amount of research you allow yourself to do, you either develop an intense fear of any “abnormal” result, or you shrug it off and tell yourself, “God knows what He is doing.” And then this beautiful little human emerges from your body. And then two days later, your heart stops because there is something wrong with your son’s.
During the whirlwind that was Ryan’s first few days of life, we were shocked to learn that heart defects are the most common birth defect, and approximately 35,000 infants with heart defects are born each year. According to the American Heart Association, nearly twice as many children die from congenital heart defects in the United States each year as die from all forms of childhood cancers combined. Surgery alone costs more than $2.2 billion dollars annually, and more than 91,000 life years are lost each year due to congenital heart defects, the AHA Web site states.
In January, researchers from the University of Arkansas and the U.S. Centers for Disease Control released the first major national study on the cost of birth defects, using 2003 data from thirty-six states. Examining cases in which a child had one of thirty-five birth defects and was under ten days old when admitted to the hospital for treatment, they found that birth defects take a financial toll as well as an emotional one on families: hospital costs alone are more than $2.5 billion per year.
How I wished at the time I was still blissfully ignorant of all this. But I realized how crucial it is for pregnant women to understand the statistics, not to scare us but to inform us. As much reading as I had done about all those genetic tests and procedures, I had never even considered the possibility that something other than what I had read about could go wrong. If I had known, would it have made a difference in our level of shock? I don’t think so. After all, it’s still my child. But I pride myself on my level of preparedness and it failed me. I guess I learned the first lesson in parenting a bit harder than most.
About 1 percent of babies with heart defects are born with Ryan’s condition, called truncus arteriosus. In babies with truncus, a single blood vessel arises from the right and left ventricles instead of the normal two, allowing unoxygenated and oxygenated blood to mix. But miraculously, Ryan’s blood never did; his oxygenation levels were the same as for a healthy baby, meaning all his organs got all the oxygen they needed.
That didn’t prevent him from having to have open heart surgery, though. On the seventh day of his life—September 12, his original due date—one of the best pediatric cardiac surgeons in the nation stopped my son’s heart and placed in it a minuscule valve taken from the heart of a newborn who had died. My husband and I, along with my parents from Maryland and two close friends, spent all day in the surgical waiting room. Every three hours, as I had been doing constantly since his diagnosis, I bolted from my chair to pump breastmilk. I couldn’t save his life but I could offer him something no one else could. I kept telling myself that—before, during, and after his surgery, as he lay in the cardiac intensive care unit at Children’s Healthcare of Atlanta at Egleston attached to so many wires and tubes you could barely tell there was a baby underneath.
