Follow Your Heart

By Corbin Lewars
Web Exclusive - July 25, 2008

"I hear a strange swooshing sound in her heart. I think you better take her to the doctor," my midwife Lisa said the day after my daughter was born. Coming from Lisa, this made me a bit nervous. I'd gotten used to the reassurances she dispensed at every potential hurdle we encountered throughout my pregnancy. I'd grown accustomed to her saying, "Don't worry. Everything will be fine." And everything had turned out fine. With the labor over and newborn Stella curled up in bed next to me nursing away, I was just starting to relax. Now this.

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"All right," I agreed. "I'll call the doctor in a few days."

Lisa was firm: "No, you need to call her today."

At my doctor's office, I was given a similar time is of the essence warning?"Take her to a neonatal cardiologist. Not next week, today."

Even with the practitioners urging me to move fast, and terms such as "very large heart murmurs" being mentioned, I couldn't believe what I was hearing. I protested, "There can't be anything wrong with her; she's so strong and vital. Listen to that scream. And she lifted her own head at birth!" But that didn't change their advice or the warnings.

After three hours of examinations and EKG readings, I was sure the cardiologist would finally release us and tell us everything was fine. Instead, he said we needed to have another test done, an echogram.

Every instinct in my body was telling me to wrap my daughter up in blankets and take her home where she could rest and nurse in peace?yet I knew I couldn't leave. The gravity of the situation was finally seeping in. My mama instinct, which had guided me for over three years while caring for my son, was not enough anymore. Although the technicians, machines, and tests made me uncomfortable?and at times angry?I knew I needed them.

When the cardiologist returned, he explained that Stella had a ventricular septal defect (VSD). He explained that VSD is a hole in the wall that separates the lower chambers of the heart, called the ventricles. He said that VSD is somewhat common and was caused by the valve in my daughter's heart failing to close all of the way when she was born. This could be dangerous, especially if the hole grew larger. It could also be something she'd live with for rest of her life without any further complications. The best-case scenario would be that the heart heals itself, and the hole closes, leaving Stella with a perfectly healthy heart. After explaining all of this, the cardiologist asked us to come back in a couple of weeks for more tests.

While driving home, my husband and I looked at each other, and I asked, "Should we be relieved or worried?"

"I don't know," he responded, "but I never want to have to do that again." Unfortunately, we did have to do it again?and again, and again.

Sometimes the tests involved X-rays and sometimes EKGs, but they always resulted in tears and howls from my daughter?and tears and a feeling of helplessness from me. At the end of the exams we were usually told that not much had changed and that we should continue to be on the lookout for signs of distress from our daughter. I always returned from the tests exhausted and looking forward to getting home, where I could lie in bed with Stella and cry.

When I wasn't at the hospital, I would forget that my daughter had VSD. She was continuing to nurse regularly and for long periods of time. She was gaining weight and was in the 90th percentile for weight and height. She was reaching for things, turning her head when she heard any of our voices, and smiled while falling asleep. She still screamed with vigor and grabbed a hold of my finger with the strength of someone three times her age. She did not appear to be someone with a heart problem or someone in distress.

When Stella was a few months old she caught a cold. Her pediatrician tested her for respitory syncytial virus (RSV), and the results were positive. Because of my daughter's VSD, the RSV concerned the pediatrician because it could affect her lungs, which may have already been compromised due to her VSD. This meant another trip to the hospital for tests and more anguish for Stella, only to be told, "Come back in a few days for some more tests."