It’s about this time I must thank Jen for goading me into scheduling an appointment with an Adult Congenital Heart Defect specialist. To get ready for my appointment, I’ve been reading through all of the old medical records I hard forwarded from the hospital which performed my corrective surgery. After looking up nearly every other word, acronym, and abbreviation, I sincerely wish I’d done this sooner. The Boston Globe published a story on childhood heart defects in adults in 2005, and I can’t say I enjoyed what I read.
In this search, I ran into the ACHA site, and discovered among other things, that I’m part of a new breed: survivors of severe heart abnormalities. Due to the relative immaturity of the field, there is little long-term data concerning health concerns, recurrence, or risks associated with corrected childhood defects. What especially worries me is that my case was somewhat exceptional. But I feel that last statement requires significant explanation.
I experienced congestive heart failure at two months of age, which doctors staved off with a diuretic and digoxin. This inaugurated several long years of frightening appointments with various specialists, as my mother will attest. Oddly enough, my early prognosis was actually optimistic based on the notes I read. I took note however, at the long laundry list of medical jargon bandied about, such as polysplenia, dextrocardia, atrial septal defect, ventricular septal defect, pulmonary stenosis, hypoplastic right ventricle, situs inversus, and more. By the time I was five, I was apparently small for my age, lethargic, and experienced almost constant cyanosis, resulting from a 60% blood-oxygen content during physical activity.
Then the surgeries started. Three of them, in all, though the first two were only endoscopic explorations. The final surgery in 1984 lasted over six hours, and involved them cracking my sternum open, sending my body into hypothermia, and essentially dissecting my heart. Many purse-string sutures were involved, valves were widened, holes closed, and finally a Dacron patch was installed between my ventricles over what was described as a “… huge hole…” in the surgical summary. After a two week stint for observation to ensure post-operation internal bleeding had ceased, I was declared “fixed” and went on my merry way. Aside from a few issues where scar tissue would get caught on a rib and impede my breathing, growing up with a Frankenstein Heart was uneventful; I never saw the inside of that hospital again for 12 years.
So why worry now, after six years of living on borrowed time? Supposedly the Dacron patch facilitates muscle growth over the patch itself, and is manufactured from a chemically inert material, so I shouldn’t concern myself over replacing it. But this is all still highly unexplored territory, even to specialists in the field. Even the doctors who performed my surgery frequently expressed surprise at their discoveries during the operation. Once the truth of the extent of my defects were known, opinion wasn’t that I was running on borrowed time, I was sprinting. Things have changed since the bygone days of 1984, and I want to see a specialist because they’ll be able to tell me, once and for all, how much of the sometimes conflicting summaries of my condition, are actually true. They’ll be able to tell me hopefully, if playing DDR is causing too much stress to my heart. I have a battery of questions I want answered; questions I lacked mental capacity to ask at the age of six.
The truth is, even after reading summaries, looking at charts, and undergoing a life-threatening procedure, I hardly understand what exactly happened to me, or why. I put it out of my mind for over two decades assuming I had little to worry about. Then I met a guy at work who had a stroke at the age of 28 facilitated partially by an uncorrected moderate atrial septal defect. Considering my extensive medical history in comparison, I was long overdue for a visit with a heart specialist. Two years ago, I expressed my curiosity by getting an echocardiogram at a local hospital from a nurse who’d never encountered dextrocardia, which was later reviewed and declared normal without my ever having met the cardiologist.
Now this “Miracle Baby” is finding out just how miraculous he is.