Your gentle touch, your tender care. A smile as bright as sunshine; a heart of no compare.
A spirit that will glow forever, in the memories that we share.

Saturday, March 26, 2011

Aidan's Genetic Test Results

I'm not really sure that Steve and I were ever hoping for the same outcome regarding the genetic testing for Aidan; it's been the one area of our journey where we've diverged a bit from our solidarity as bereaved parents.  He wanted the rest of our family to be spared the worry and medical intervention that would necessarily accompany a 'positive' result; I wanted to have an answer as to why my healthy little boy's heart suddenly stopped, without warning.  Now that the results are in, and they're negative, I'm still not sure either of us feels as if we've been granted presence of mind.

That's good, right? people say when we tell them.  It is.  It is, it is, I remind myself, because Devin and Quentin are most likely safe.  But it's still not an answer for my oldest son.  His death remains a mind-blowing, incomprehensible, irrational event.  Were we to be burdened with a positive result, in my mind, we'd then be able to move forward, test the rest of us, and thwart any future tragedies among us by arming ourselves with knowledge, medicine, and changes in lifestyle.

In talking with the geneticist at the testing lab, I was assured that, of the three main types of arrhythmia disorders for which Aidan's DNA was tested, we can be about 80 percent assured that none contributed to his death.  So, assuming the data is correct that suggests half of all unexplained sudden cardiac deaths due to arrhythmia occur as a result of a genetic mutation, we're fairly certain that Aidan did not die from something he inherited.  On the flip side, Mr. Geneticist reminded me, the medical community agrees that approximately half of all unexplained sudden cardiac deaths happen as a result of a 'spontaneous mutation' somewhere along the line of development, either induced by nature or by environment.  Huh???

And because defining the exact cause of death due to arrhythmia is a diagnosis of exclusion (or elimination), and because at this time, there aren't any more genetic tests available for us to pursue, we've reached the end of our road, for now, at least where scientific knowledge and access to that knowledge is concerned; our determination to continue our pursuit of an answer, however, is relentless.

I asked about long-term preservation of Aidan's blood, DNA, and tissue samples.  "Huh," Mr. Geneticist said, "that's probably a good idea," and I was told to Google 'biobanking.'  I was also reminded that genetics research is moving swiftly forward every day, and that costs will soon come down, and insurance companies are already starting to contribute more for families in need of testing.  Perhaps in five years, he said, maybe ten, we'll have another test that might yield results.  He was a nice man, very helpful in providing Genetics 101 instruction over the phone to my B+ Science brain, and I really did hear compassion in his voice as he ruefully explained that, for the few families such as ours who have reached a non-conclusion through this test, we're out of options.

So we know that we still don't know, and it feels like we know less each passing day.  We knew our son was one in a million, but never in this sense.  We know he was alive, healthy, happy, and having a great, carefree day one minute, and that he was gone the next.  Not being able to bridge the divide between his 'living' and 'nonliving' states of existence with some sort of rational explanation tears us apart inside.  The things you do to protect your children, to keep them safe, and to bring them back to health when you sense that they're not well; and yet this happens?  I'd never even known it was a possibility.

It's quite one thing for Steve and I to juggle this in our minds and hearts; quite another for Devin, who insists that he'll die, too, when he's seven.  Although I've assured him that he is healthy and will live through seven and beyond to old age, Aidan was healthy and he died, is his response.  I spew forth all the textbook-appropriate responses doled out to me by our therapists, but I don't believe them when they come out of my mouth.  I have the same question, and since Science couldn't help us avoid this tragedy, how can I trust Science when it tells me it won't ever happen again?

I've really hesitated in publishing this post.  In the past, I've only written when I wasn't feeling so much like I'm going insane, or like my insides aren't seething in pain and anger, or so resigned to this twisted reality that I want to dope myself up and not ever feel again.  People like you, however, have been asking for me to write, and to not worry about keeping a happy face while I do, and I'm grateful for the chance to write freely, no holds barred, for those who are up for it.  For those who aren't, I apologize if I upset you.  From this point forward, this blog might as well have a fat "Read at Your Own Risk" sign stamped above Aidan's picture.  I don't know where to go from here, with the search for Aidan's cause of death, with my struggles to manage the cards we've been dealt, with counterbalancing the joys and blessings in our lives with this awful truth, with the pressing, heart-clenching realization that we all likely will mourn Aidan longer than he was ever even with us.

Wednesday, March 16, 2011

Sudden Cardiac Arrest Cases on CNN

Martha Lopez-Anderson, President of the Parent Heart Watch group that funded Aidan's genetic test, has been an incredible source of support and information for me.  Martha lost her son, Sean, six years ago at age ten when he was rollerblading recreationally, was given a 'bogus' diagnosis by the coroner, and has been working tirelessly to help other families find answers as to why their children suddenly collapse and die from a heart event. 

Here is the clip of her interview about the recent sudden cardiac deaths of high school athletes:

While the issue is prominent in the news at the moment because of the current series of events, it is our hope that awareness continues to spread in the coming months and years.  Martha and her organization, as well as several other organizations involved in similar ventures, are trying to change legislation to include mandatory EKG screenings, national standards for medical examiners, and a single national database for information collection concerning sudden deaths in children.  

Monday, March 14, 2011

Devin as Brother Billy Goat

So, our aspiring actor debuted last week in his class production of "The Four Billy Goats Gruff" (they had an extra student to work into the fold).  Devin was the Brother Billy Goat, and he was awesome:

Pausing to pose...

Camera-man Dad, sleepy Mom, and little peanut Quentin were there to shout, "Encore!"

Other notables this month: 
We signed up for Kindergarten this past Friday.  Unbelievable.  Already.  Where did the last five years go???

Because the floor in his bedroom has been hiding under piles of toys, efforts have been underway to reduce-reuse-recycle the ones we seldom play with.  Says Devin, of the castaways, "Another one for Home Goods!"  He means Goodwill...

A sleepover with Grandmom was probably the coolest mini-vacay ever.  A win-win-win event, from our perspective-- thanks, Grandmom!

First goal scored in indoor soccer this weekend-- T-ball opening day first weekend of April-- welcome, Spring!

And still, Devin's the only one able to get Quentin's full attention-- eyes opened and focused, head turned-- it's really quite incredible. 


Sunday, March 13, 2011

Quentin, One Month

Hi!  What's up with the Silvas, you ask?  I know, we've been under a rock this past month-- it's hard for us to find two free hands together to write, as Devin and Quentin are keeping us very busy!  Here are a few updates (I broke them into separate posts to make it easier to view the pic and video files...)


Quentin:  Some Firsts

First tummy time on the playmat-- tough workout put him to sleep!

First full bath-- not sure about it at this point, but the lack of screaming and kicking indicated that he liked it a ton better than the previous sponge baths...

First night out of the cradle and into the big boy crib (3/12/11)... slept really well!

Perhaps because Aidan's Blue Bear and Puppy watch over Quentin and blow kisses all night long...

Next:  Devin (Brother Billy Goat), Update on Aidan's Genetic Test (3/13/11)