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The emotional toll on NICU families

[November is Prematurity Awareness Month and November 17 is World Prematurity Day.]

Somewhere in the literature about having a premature baby in the NICU is always a bottom line, extra-added section on "the emotional toll" on families that gets left at that. There are pages and pages of what could be wrong with your baby, what it means, and the difficulties they face. But no real explanation of what families struggle with and the reader is left with the impression that it is stressful, exhausting, and painful.

What they don't usually mention is that this is because the NICU experience is often not family-centered.

Your baby will be seen by a team of nameless, professional, but not-all-that-nurturing staff who go about their business without much attention to you, the parents and family. We often feel neglected, ignored, abused and like we have little say in what happens to our child.

Which is the exact opposite of what good healthcare should look like. Communication, medical care, and even basic infant care should happen in the context of, yes, helping to heal a sick child. But even more, the hospital environment should include attempts to include the whole family. No family expects or plans for a lengthy NICU stay and valuable time for bonding and welcoming a new family member is lost.

Not to mention that while doctors may be able to make decent medical decisions when it comes to biology, a parent is still the best authority on what should happen to a sick child in many other aspects. Really a parent is the only authority. And healthcare professionals would do NICU families a favor by moving aside to let families guide the process. Doctors are advisors and resources, not the ultimate caretakers of our children. Information should be made clear so parents are armed for good decisions. But every baby is unique and those decisions, in the end, should wait for parents/guardians to be made unless the baby's life is at stake. Parents should not be treated with gloves like we are delicate and ready to crumble. Maybe we are and maybe we will. The other end of the equation, however, is that the rest of the population feels like they are being talked down or mistreated--in reality, the most important people in the room are those parents and that baby. They come first. But what a parent truly wants is simply to be left alone as much as possible with their child without feeling bothered or invaded.

Not to mention services that are lacking in our current social structure. Even more, perhaps, families need help with juggling work, other children, and carrying on with life while they also attend to their sick baby. Hospitals should be better about being proactive in offering social workers. And in a way that feels helpful and not demeaning.

And, most of all, better home healthcare options and alternative treatments should be offered to get babies home faster.

This is the real emotional battle families are fighting. It isn't just difficult. It is frustrating to lose control over your own welfare and your own sense of dignity. Overall, our system needs to do a better job respecting the entire family and heal sick babies in the context of making a bad situation better for the entire family unit. The objective is not just to save a baby but to comfort and heal. First, do no harm.

Comments

  1. Nice post, Kyle. I'm glad you're taking this crappy situation and trying to use it to make things better. You're awesome (and so is the rest of your family!).

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