One of the main sources of fear and concern at the time of a spina bifida diagnosis, brought to us by doctors and nurses, is that of quality of life. And the topic isn't normally communicated as a topic of care or concern about the parents or the baby, but (seemingly) with a goal in mind: for the parents to choose to abort.
The pressure is real. In our support groups, we've read encounter after encounter of families who, under the guise of informed consent, are given the absolute worst-case scenario, often driven by at worse, intentional misinformation, and at best, non-firsthand information from decades ago, or from medical school where that's all they were taught. It can be a bleak, dark time hearing this usually one-sided information.
And it's effective: 64% of spina bifida babies are not given the opportunity to live in this country.
There are a myriad of arguments I could write about in response, but I want to take a road less traveled, and look at this topic philosophically rather than some of the standard responses.
First of all, take a look at the definition in the pic. There's some irony in it, by defining it as a 'standard'. A standard, by it's own definition, is something that is set, measurable. That way, whatever unit of measure you are using, whether a teaspoon, a kilogram, or a hectare, is a known, set amount.
Tell me then, would you, what exactly this standard is for quality of life?
You can't, because it's entirely subjective. But let's take it one more step: what does this argument say about friends and loved ones around us who get into an accident, or are injured on the job, or get sick, or suffer wounds on the battlefield? What of them? Should they also then be taken out of the equation because they don't meet some arbitrary and subjective measure of quality of life?
It's a ludicrous argument, and yet parents face this very thing almost every single time a spina bifida diagnosis is made.
Part of the reason we share so much of Evanna's story is for people to see what her actual quality of life is.
We'd love to add others' stories as well, so share in the comments!
