Parents in general can be rather protective of their own decisions. Breastfed or bottle fed? Circumcision or not? Cloth or disposables? Stay at home or daycare?
Need I go on?
With a premature child, those decisions you make in the beginning are life and death. Invasive efforts or comfort measures? Steroids or prolonged vent exposure? Close the PDA surgically or with medications? HMF or formula?
You are expected to make these choices without medical education. Without emotion. Without precedent.
And yet, you make these choices. The only way to settle your mind is to convince yourself that you chose the right way. You chose the only correct answer. You did everything right for your baby.
Otherwise, the what-if’s can eat you alive.
The problem with this is that our mentality of I-did-the-right-thing lingers with us long after the NICU. Those parents decided to resuscitate? What were they thinking? Didn’t they know this and this and this would happen?
And those parents? They removed care? Why would they give up on their child?
How could they offer steroidsthat many times? Don’t they know what happens to a baby’s brain on steroids?
And, oh my heavens, haven’t they read the studies on breast milk and NEC?
Accepting that there might be a correct path for another family means that there is a tiny possibly that we did not choose correctly for our own child. And with so much pressure, with so much on the line, that possibility can be crushing.
How could they be so different from me?
How can their choices be so different from mine?
So we write things like, “I can’t believe they would kill their own baby!” on blogs and we are outraged when someone questions how we could “torture” our own kids just to keep them alive.
And we need to stop. We need a discussion.
A real discussion about how there is always more than one decision. There is always a choice.
I chose to spend millions of taxpayer dollars to keep my daughter alive. That was my choice. I’m incredibly grateful I live in a country and world where that choice was on the table.
I cannot make that choice and then be outraged that others question it. I cannot make my choice and then criticize other mothers and fathers for making different choices.
I cannot pass judgement on a situation I have never been in.
As a mother of a preemie, as a mother, as a woman, as a human, I cannot expect to be granted the right to make a choice and chastise others for doing the same. The essence of there being a choice is that there are two or more options.
Now, we can have a real, honest and important discussion about whether or not there should be a choice. But until we stop passing judgement on people who have utilized their options, who have looked at the facts and made a choice, just as we did, that discussion cannot happen.
And it’s a discussion we need to have. For our future. For our children’s future. For the future of healthcare in America and for the future of neonatal medicine.
Stop the judgement.
Start the discussion.
Maybe we’ll all learn something along the way.