“She’ll never live.” These were the first words a new mother heard from the attending nurse when her child was born. The baby was blue, weighed less than four pounds, and had some type of serious heart “problem.” That child was me.
As a child, I never really understood exactly what condition I had or what the severity of it was. My pediatrician only noted that I had a heart “murmur,” my heart sounding like galloping horses. In hindsight, I can appreciate that in the late 1950s, medical science and diagnostic tools weren't where they are today, making an accurate and complete diagnosis difficult. I only knew that I got tired easily during gym class, couldn’t run as fast as everyone else, and had trouble keeping off weight. Sports were not a part of my world growing up, particularly in a pre-Title 9 world. But that was fine by me. I focused on brains, not brawn—an area in which I excelled.
So, I just kind of went on with what was a “normal” life for me. Not knowing the severity of my condition and any limitations it posed, I was determined from an early age to attend the Naval Academy. My dad was a U.S. Naval Academy graduate and was killed serving his country when I was six months old. It was my long-standing goal to honor his memory by attending the Academy and become a career officer.
Finally, it seemed that my wish would become reality—I was thrilled when I was in the first group of women selected to attend the Academy, pending medical clearance. I had already met the academic requirements and passed the physical fitness test so I didn’t foresee any problems. In fact, I already had a roommate!
It was when I had to undergo a comprehensive medical exam that my complete congenital heart issues were made clear. I had Ebstein’s anomaly, a rare congenital defect. I was denied admittance to the Academy because my heart posed too much of a risk. I was devastated.
This was the first time I had experienced any major limitations or discrimination based on my heart disease. I was angry and confused—how exactly would my life play out with such a serious condition?
Once I had been diagnosed, I was monitored by a pediatric cardiologist. I required no surgery, no medication—his only advice was to rest when I got tired and come for an annual cardiac checkup. When I later married, he advised my husband and me that we should consider adoption if we desired children.
Life went on. I became focused on my career and eventually mothering two adopted children. I felt fine and saw a local cardiologist annually. I had sort of dropped off the grid in seeing a congenital specialist—the complexities of life simply got in the way of traveling to a city to do so each year.
When I turned 40, my local cardiologist suggested I be monitored by an adult congenital cardiologist. In fact, he recommended the adult clinic at the same hospital where I had been seen as a child.
My annual trek to the city began again. At one visit, my doctor mentioned that I may need surgery “down the road.” I just filed that in the back of my head and didn’t think much about it—after all, I reasoned, it could be a long time away.
Slowly, my doctor began preparing me for this eventuality. She had me meet the surgeon during one of my visits just to “touch base.” Again, I didn’t think much about it.
At my most recent appointment, the words “It’s time” shook me into reality. I realized then that surgery was coming faster than I would have liked or planned for. It was time to prepare physically, emotionally, and mentally.
My goal is to get in the best shape that I can be, given my limitations, for surgery that is tentatively scheduled for the May timeframe. In this blog, I will be chronicling my thoughts, fears, successes and failures as I hurl towards May. Hopefully, my experiences will help others facing similar challenges.
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The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.