Thursday, January 07, 2010

The first closure.

Of all the questions in the world, "Why?" may be the hardest to answer. Why are we here? Why do people suffer? Why is the sky blue?

The question that, for me, has dominated nearly every waking minute for the last six weeks has been, "Why did my baby die?"

My need to know has been manifold: On an intellectual level, the scientist in me hasn't been able to understand how anyone could die as quickly as she did. On an emotional level, the mother in me needed to know, for sure, that my baby really didn't suffer. And on a purely selfish level, I needed to be re-assured that I couldn't have done anything different to affect what happened that horrific night.

I have played the minutes between 8:55 pm and 9:06 pm in my mind, over and over, a thousand times. What if I was wrong? What if she really did have a pulse and I just didn't get the defibrillator on her quickly enough? What if I'd been skating by her side, as I had been just 10 minutes earlier? Maybe I could have started CPR 90 seconds sooner? What if we hadn't gone skating that night?

Today, I had a call from the county coroner. After a short exchange of pleasantries, he took a deep breath and said, "We have been completely unable to find a single anatomical or pathological reason for her death." His voice caught. "I'm sorry."

"So that means Long QT Syndrome, right?" I finally exhaled.

"By process of elimination, yes. That or a channelopathy even more rare." He paused. I could feel his shrug over the phone. "A lightning strike."

It was precisely the answer I expected. Figuring this puzzle out has taken no small amount of my attention over the last few weeks. I had crossed off all the other causes of sudden cardiac death, settling perhaps a week ago on potassium ion Long QT Syndrome. Long QT is uncommon, but not rare either. It happens because the careful balance of sodium and potassium that make the electrical signals propagate through the heart (and cause it to beat) gets out of whack. The protein mutations that cause it can range from nearly benign to inevitably fatal. It causes the heart to "forget" to beat, and is usually diagnosed from a fainting incident. It is usually first evident in young boys, but nearly always makes its first appearance in girls at the cusp of puberty. In the most malignant form, the first indication is sudden cardiac arrest. When this happens, it not only kills the heart, but the errant electrical signals cascade through the body and cause nearly instant loss of brain function as well. These children do not recover.

Perhaps two dozen children per year die because of this. You can't diagnose it after death, but all the other causes had been exhausted.

So there it was. A lightning strike. Can't predict it. Can't stop it. Can't repair it. He reassured me that there was nothing that I could have done or not done to prevent this outcome. I knew in my heart he was right.

"For the record, she may have been the most beautiful child I've ever seen. I don't know why that's important. We tried so hard to find you a definite answer. I'm so sorry."

We cried together a little bit. Then he wished me well and said goodbye.

I know why she died so quickly. I know she didn't suffer. I know I couldn't fix it.

Not that it changes the outcome, or lessens the pain of having lost our beautiful girl. But at least I can stop asking Why.


Anonymous said...

Wow. Just - Wow. I am in awe of your ability to process this on this blog. You and your family are constantly in my thoughts and prayers. You are an inspiration.

Alison said...

Bean. As elsewhere, I don't know what to say. *hug*

Anonymous said...

Knowing why must give you some shred of comfort.It's like now you can process it , wring it dry & move to the next step.
I pray for you all the time...

Lisse said...

Wow. You just never know, do you?