Decision Making in the NICU
Hello Bright Eyes
Do you remember growing up, particularly as a teenager, and having your parents say: “You are not the center of the universe” or “The world doesn’t revolve around you”. I would wager that every one of us heard those phrases about a million times between middle school and high school. And it is true. The world doesn’t revolve around us.
Except… except….
Our thoughts. We see the world through our own lens, our own unique reference point. Our thoughts and our experiences give us the framework through which we see the world and make decisions. We think that the way we do something is standard. It is normal. And the way other people do things is “abnormal”. Let me give you a few concrete examples:
If I were planning this project, I would…
If I was in that relationship, this is how I would …
If I were dating someone, I wouldn’t do…
If I were pregnant, this is how I would give birth.
If I went into labor at 23 weeks, this is what I would want.
If my preemie had a head bleed or stroke or XYZ, this is what I would do.
If my kid were acting that way at the party, this is how I would react.
In all of these situations, you are measuring other people’s behavior against what you think you would do in that situation. You are filtering their experience through your own set of thoughts, beliefs, ideals, and experiences. You are thinking about their life, their decisions, their behavior, or their words from the perspective of your own thoughts and assumptions. You aren’t putting yourself in their shoes - you are simply walking into their house in your own shoes.
In general, your point of view is NOT the standard. Your point of view is not the primary point of view, the “normal” against all else should be measured. Your way of doing something is not the obvious or sane or reasonable thing against which all other actions and decisions should be measured.
Except… except…
Except when you are a parent, making decisions for your baby or child. You are the reference point and the only reference point that matters.
Why is this important to recognize the concept of reference points when it comes to decision making in the NICU? Because… it is so important for families to realize that they have the power to make decisions for their children. Here are a few things to consider:
Doctors and nurses have their own reference points. We have seen a lot. We may have a different point of view and that is ok. Physicians and NICU staff should aim to present facts, not opinions, to parents. Parents deserve to know what we know - and more importantly - what we don’t know. When presenting the facts, it is important for physicians and staff not to filter the information through their own filters and values.
For people supporting NICU parents, or non-NICU parents who are facing decisions to make for their children, try to stop seeing their decisions through your personal reference point. When looking without your personal filter, you will be able to show true empathy, seeing where other people are coming from, and how their minds work.
As a parent, the only lens that matters is yours. It doesn’t matter what the doctor would do. It doesn’t matter what grandma would do. It doesn’t matter what your best friend would do. It matters what you think and how you feel. Let go of what other people think because it is filtered through their reference point, not yours.
How do I recommend you make decisions?
Get the facts from your doctors. Whether good or bad, you can not make decisions if you do not have the information.
Talk to supportive family and friends or look for preemie / NICU parents who have been there before. Again, remember, they can offer perspective and advice, but only you can make the decision.
Do not make a hasty decision. Get all the information you need, make sure all of your questions are answered and feel comfortable with your decision.