I see that there's a lot of new interest in our story, particularly in the posts that talk about what we know and don't know regarding why Aidan died. This one, titled "Why?" was written in December and might give new readers some background on what happened and why we're so interested in working with Parent Heart Watch and Simon's Fund to prevent this tragedy from happening to other families...
As our Christmas cards are finally making their way to you, and you're perhaps checking out our blog for the first time, there will probably be a hope for learning about why Aidan suddenly passed away on the afternoon of September 4th. And I've had in my mind draft after draft of the letter I would write regarding what we know, or more aptly, don't know, at this point, but I've been a busy little elf, and it's late, and I'm tired, and it's crushing to recount the last three-plus months of autopsy and histology reports, doctor visits and phone conversations, Internet research, frustration with the opinion' of the coroner's forensic pathologist, and the reversal of that opinion by our group of highly specialized CHOP medical professionals.
In summary, we still don't know what caused Aidan's heart to stop suddenly, on that afternoon, after a morning of riding his bike and running errands and playing in the yard with Devin. He was fine. It was a normal day. And yet, at some point during the few minutes during which I was helping Devin change his clothes, Aidan collapsed without a sound in the hallway just outside the bedroom door, and when I went to him, he was already gone.
Our doctors, who are all highly-renown specialists bearing 15 syllables to each of their professional titles (I kid you not), have been baffled. The plain truth, we're learning, is that medical science "just isn't there yet." We just don't know enough about the electrical conduction system of the heart to understand exactly what trips it now and then. We've also been told, redundantly, sometimes with more compassion and sometimes with hints of impatience, that there's a good chance we'll never know exactly what happened. Genetic testing, which we're about to undergo, is far less defined and produces far greater nebulous results than we'd assumed would be the case, in the year 2010, in one of the most advanced countries in the world. And somehow, we're supposed to accept that.
Common phrases that have been reiterated to us are:
Unfortunately, sometimes, this just happens. We don't know why, but it does. The hearts of kids thought to be perfectly healthy and with no pre-existing conditions suddenly stop. Rare, but it happens.
Nothing could have been done to help your son. You didn't miss anything. The best doctors in the world could have been in the room with you and the results would still have been the same.
And this one, which always confounds me because our doctors, all parents, and whom have all been wonderfully supportive and compassionate, somehow find the ability to say with just a little more detachment than I find comforting:
You are living a parent's worst nightmare.
Since September, we've learned about other families who have suddenly lost their school-aged children to some kind of "cardiac event," sometimes eventually with a cause determined, sometimes not: a 9-year-old on Long Island; an 11-year-old in New Hampshire; another 7-year-old whose state of residence is unknown to me but whose father is a cardiac specialist and is so devastated by his loss, even two years later, that he couldn't bring himself to make contact with me at the request of his friend, my aunt. It happens. We don't know why, but it does.
I can tell you that, on our end, this 'unknowing' has forced our left brains into hyper-drive, causing us to experience almost a delayed sense of grief, as our shock and lack of a medical explanation (on top of the trauma experienced that day) leave us still in disbelief. And very much concerned about the health of our other children, and ourselves, and our extended families. The chances of Aidan's death having been caused by a genetic arrhythmia are "minute," we've been told: this "won't happen again in your family, or probably to any other family you'll ever know." Except that we've already experienced the nearly impossible. We've already been jilted. We've spent the last seven years trying to protect our kids from accidents, kidnappers, and strange illnesses; in fact, we spent our efforts ridding our house of BPA-filled plastics, chemical cleaners, and pesticide-laden food, like many of you. We were even, no doubt, on the front page of PECO's weekly company newsletter with the caption, "CRAZY," as we insisted that an EMF reading be taken of our backyard fence, which lies under a power line, before we bid on our house. Yikes.
And still this happened. And still we don't know why. If we think about it cosmically, as in 'what did we do to deserve this,' our minds implode. So right now, at this point, with the rest of the world taking the next two weeks to not answer work phone calls and to let messages sit on desks, we're taking a break. We've got holidays, Devin's 5th birthday, and the quickly-approaching due date of our newest little guy to focus on. And we'll need your phone calls, your emails, your texts, your visits, your little notes in our mailbox, to get through. Please don't be concerned if we don't answer right away; you can rest assured that your effort, however, is making a difference to us.
Thank you for checking in-- and now it's really late-- that's what the week before Christmas is all about, right?! xoxo to all-- and to all a good night--