To begin with, I think many people – me included – believe(d) that saving a preemie meant going beyond the bounds of reason and good sense. I pictured children with debilitating lifelong conditions, incapable of experiencing anything resembling a normal life. That wild of an expense must be the extreme cutting edge of medicine – science for experimentation’s sake. The stories about ‘million dollar babies’ made me think,
What on earth were those parents thinking?!
After 84 days in the NICU, I can honestly say we didn’t encounter many of those extreme cases brought on by religious beliefs or an inability to accept a tragic outcome. We heard of one single instance of the parents going against medical advice, and that was to stop hospital care – not extend it unnecessarily. Instead, we met parents who were making educated bets alongside the medical professionals – professionals who could only provide statistics and gut feelings in a fairly young field of study. In fact, the first thing you learn is that no analysis is valid really until after day 3, due to the risk/consequences of brain bleeds. I guarantee you that no one walks into the NICU looking to burn money, screw an employer or even disregard the cost of care. To be honest, other than a momentary thought of
Thank god we have insurance!
, our minds as sudden parents were inundated with new words, new terror and new confusion.
If a baby dies, people question the value of the interference to begin with. What’s not widely understood is how fine the line between life and death is with bodies that small and fragile. When Tess tanked in a few hours on Easter, we didn’t realize how close we came to losing her until much later. A friend’s son in a European NICU made it for months before they lost him. And that possibility is so close every day your child remains in intensive care that I burst into tears scrubbing that day, mourning their loss while grateful we weren’t in the same situation that day.
As we watch Tess bomb around the house yelling, “PAPILLON!” and “SASSY?”, we don’t often experience that vivid NICU flashback that followed every single milestone reached in her first year. Our energetic kiddo doesn’t look even remotely like she spent months in an incubator hooked up to life support.
So I reacted with a start when I read this article. I immediately flashed back to the panic, to the many calls with our insurance company, to the weekly pre- approval of Tess’ care. I think back to the exhaustion, grief and panic. And then I remember how many people asked if I was worried I’d be fired because of her medical bills.
Perhaps people felt freer to criticize because we adopted Tess. After all, she didn’t come out of my body, so I must be able to have this conversation in a non-emotional way, right? I was stunned by the question, by its implications, and by the inappropriateness of the question in relation to Tess, who was relatively healthy…AND OUR DAUGHTER.
What level of scrutiny must we accept? Who decides what life outcome statistics determine whether she lives or dies? Should we feel guilty while living a nightmare? Why should we suffer a loss of privacy and fear of unemployment because of a sick child? I can only be thankful for my employer’s grace and respect for our family, while empathizing with those who did not have the same experience.
Tess is 100% alive, and already contributes loads of joy to our family and the world. No one would look at her today and question whether she deserves medical treatment. So as our preemies head butt us and zoom around on all fours (Remy), or gloriously eat soup with a spoon while chattering away (Tess), we remain grateful for the support and irritated by the very question of whether medical intervention at birth is appropriate. That question, like many others, is up to the doctors and the parents. That question is also too broad to be discussed as a philosophy. So unless we’re also going to discuss cancer treatment ROIs, I’d rather get back to dinner.