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.

So we read articles about this one family who chose to terminate, or we read another article about a mother who regrets saving her 23 weeker and we think, “How could they?”

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.

We judge.

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.

So stop.

Stop the judgement.

Start the discussion.

Maybe we’ll all learn something along the way.

2 responses

  1. My heart breaks for mothers who have to cope with this situation. It cannot be easy to make quick decisions without having any training in this sort of field. Yet, I wonder how many doctors would still be at a loss if it was their own child, even with all their advanced knowledge.

    I would gladly send my tax money towards any baby fighting to live. No questions asked.

  2. I definitely think you are right, and I hope that the experience of being a preemie mom has made me more compassionate. I think this post is important not only for us preemie parents, but also for health care providers. I live in a very poor city, and I find that the people who provide services for my daughter are often burned out, harsh, and judgmental. My first impulse was to be insulted and feel that as a middle-class, educated mom, I shouldn’t be treated that way. When I thought about it more, I realized that no preemie moms-not poor moms, not young moms, not moms with complicated lives should be treated that way.

    On a practical note, I really like the book “Extreme Prematurity.” I think it provides a good evenhanded description of preemie issues and it really helped me understand some of the big issues related to prematurity.

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