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."
But this time, I was quite certain that I had had enough. "I don't want to go up there anymore." I complained to my husband. "When I placed her on the cold metal table and saw the big X beamed down on her chest for the X-ray, I felt as if I had set her up for target practice. She kept crying, and the technician said I had to hold her still. It took every ounce of control I had not to grab her off of that table and run away as fast as I could. I continued venting, "I birthed our babies at home so they wouldn't have to be subjected to surgical instruments, steel tables, and bright fluorescent lights, but now it seems as if she is spending all of her time being checked and probed. She needs to be home where it is warm and quiet and she can sleep whenever she wants in order to be able to fight her infection."
My husband agreed, and after and consulting my midwife and doctor for validation, I decided that this time I was going to follow my own instincts rather than the advice of the cardiologist. To my surprise, he didn't try to sway my decision. After promising to return to the hospital immediately if my daughter's health became worse, the cardiologist agreed to postpone her next visit until the end of the month.
It was at this visit that I noticed a change in the cardiologist. Once he saw Stella wiggling and giggling on the examining table he laughed, "You weren't kidding! Look at her?she is twice the baby she was last time I saw her. And so alert. Wow!"
On the surface, this exam may not have appeared to be any different. He continued to warn us to look for signs of distress, but I could sense a shift in his demeanor. Instead of basing his opinions and advice on medical tests and records, he was now including my daughter in his assessment. Whenever he looked at her, he laughed and smiled. At one point I heard him tell her, "It's obvious that you are really strong, so why don't you start using some of that strength to heal your heart?"
Up until Stella was about six-months-old, I had approached every doctor's visit thinking, "I hope her condition hasn't gotten worse." After months of hearing that it hadn't, I shifted my thinking to, "I hope the hole goes away all together." I asked the cardiologist if there were any foods I could eat or any alternative approaches I could try to help aid my daughter's heart. "Not that the FDA has approved," he said with an apologetic smile. So I sought advice elsewhere. I asked my friend, who is a Reiki practitioner, for advice. She told me that pink and green were good colors for the heart and suggested I try to dress my daughter in these colors whenever possible. I followed her advice and supplemented it with my own ritual of holding my hand over Stella's heart every night while I nursed her to sleep.
After several weeks of following these rituals, I brought her back to the cardiologist. At this appointment he smiled and said, "It is definitely getting smaller." Even better, he made this diagnosis by listening to her with a stethoscope and didn't subject her to X-rays or echograms. Then he surprised me with more good news by saying, "I'll see you in five months."
"Wow! That long? That's great. I can't thank you enough, you've really made my day," I gushed as I prepared to leave.
"You've made my day as well," he said, "and feel free to call me if you have any questions or concerns, but I assume you won't. She's doing great and I think her heart will heal all the way."
"I think so, too," I agreed.
I cried all the way to the car, but for once I wasn't crying out of distress. I was crying with relief: relief that my daughter's heart appeared to be getting better; relief that I could once again feel comfortable and confident in following my instincts; and most of all, relief that what I thought to be true from the moment she was born, was looking as if it were so. My daughter is an amazingly strong individual, and she is going to be just fine.
Corbin Lewars lives in Seattle, WA with her husband and two vibrant children. She is the author of Swing Set, a mommy-lit book with a sexy twist, and the memoir Home: Story of a Birth, both of which are out for submission. She is the founder of the zine Reality Mom, and her articles can be found in Midwifery Today, Stories with Grace, mamaphonic.com, hipmama.com, and other literary journals. She can be reached at firstname.lastname@example.org.