Preemies vs. Statistics

October 20, 2014

When too many numbers get jumbled in my head, it’s overwhelming. Even on a good day. I came this close to failing my mandatory college statistics class.  I would tell you what this close means in percentages, but herein lies my point, I’m that bad at math.  So, when we found ourselves in a hospital room listening to a neonatologist give us statistics for our unborn, not yet 24 week baby, it was mind numbing. And heart wrenching.  Sucker punching, frankly. 56% chance of surviving the delivery. 67% chance he would have moderate to significant developmental delays. Every day brought a new set of data and stats. If you’ve logged any NICU time at all, you know how devastatingly important data becomes. With each diagnosis and in every conversation there are always, always statistics to consider. The statistics seem to mean everything in those moments.

And time isn’t in your favor. There weren’t days and weeks to digest the data and make a decision. There were hours, if you were lucky. Sometimes a decision about treatment had to be made so quickly that within a matter of minutes we were forced to reconcile logical and reasonable statistics with the most unreasonable and illogical organ in our bodies, our hearts. Weighing the percentages and odds of favorable outcomes versus the faith we had in our baby, the faith we had in God. Without seeing the future, and with less than good percentages, we had to find the right balance between data, hope and intuition. It is without a doubt one of the hardest parts of the NICU journey.

I wrote a post on my personal blog about the point at which, after the immediate-ness of the NICU passed, statistics began to look different to me. Not to mean that the data changed, the numbers and odds are still the same, mathematically speaking. But my perception and ownership of what those statistics look like in real life, removed from the crisis, changed. Some of the sentiments in this post are taken from my reflection within that post:

“Much is written about the viability, quality of life and grim statistics for preemies. Often inevitably, the discussion begins to focus on the ethical undercurrent of whether or not, saving a micro preemie whose outlook isn’t good, based on statistics, is worth it. There are, after all, so many numbers and odds to consider within the circumstances of each NICU story. Statistics about possible outcomes. Statistics about long term care. Percentages about moderate to serious life long complications. Statistics about cost. Data about quality of life. Odds of developmental delays and difficulties.”

The numbers. They are so scary in the moment, aren’t they? Mind numbing at times. But when the calendar pages flip further from the NICU, and you embrace the knowledge that your baby’s journey is personal and unique, those statistics begin to look less like scary percentages. And more like life. As you watch your preemie grow and the NICU gets further from your memory, it becomes evident that statistics, while important to the decision making puzzle, aren’t absolute.

There is so much about life that isn’t captured within the singular reference of a data point.

“A statistic, in the moment of medical crisis seems so final. Sometimes the data tries to paint the picture of your child’s future like a color by number. Statistics hang over you, weighing in the air as you face the cruelty of having to make some near impossible decisions. But statistics look so different in reality. On a playdate. In therapy. On Christmas morning. Eating ice cream. In your child’s personal story and journey, statistics don’t perfectly map his life. Make no mistake, numbers and data are very important to the decision making process as you weigh treatment options for your baby. But odds and percentages aren’t everything. Statistics don’t define everything about your child.”

I am grateful for the data. The numbers and odds can give insight and guidance about similar situations and comparable diagnosis and there is a gift in that discernment. But each number used to calculate a statistical data point is also a story. Your baby’s story. Tucker’s story. The stories of the babies before us and the ones being wheeled through the NICU doors as you read this post. The struggles, triumphs, personalities and uniqueness within each of our stories can never be illustrated by a single number.

Regardless of the outcome, your story is what you’ll tell when people ask you about your baby. You won’t rattle off the statistics. That’s not how you’ll see or describe your journey. The black and white numbers that seemed to auto-direct your baby’s course will soon be less important. You’ll see that your child’s story will unfold in your life uniquely and perfectly for him. I almost failed statistics, this is true. But even I know the odds of predicting with perfection, a preemie’s exact outcome, is 0. There’s a little blonde haired, blue eyed 56% chance statistic that reminds me of that every day.