As a parent of a child who spent time in the neonatal intensive care unit, I can tell you it was the birth experience I didn’t expect and hadn’t planned for. Though my daughter’s stay was shorter than some, the emotional fallout and shock of it all did not wear off for some time. Over the years working for Hand to Hold, I have read and responded to parents sharing similar comments on our support forums and our blog that express similar statements. What do we do when well-meaning friends and family say things that bring up all the emotions we have surrounding a baby’s hospitalization?

Parents who have not had direct experience with a traumatic birth or a newborn’s hospital stay can struggle with knowing how to act, what to say and what to do.  Here’s a helpful tip list from one parent to another to guide you when someone in your life tells you of a loved one who unexpectedly delivered early or had a newborn in the hospital for other reasons.

preemie nice what not to say

What not to say

Why did it happen? / What did you do?”
Steer clear of statements that could be perceived as placing blame. In many cases, the medical reasons for an early birth or specific diagnosis are unclear. It’s as confusing to a parent as it is to you. Educate yourself about the common questions that you probably want to ask most.

“At least……”
These statements range from “at least you can sleep while the baby is in the NICU,” to “At least you didn’t have to endure the discomfort of the last trimester.”The truth is, NICU moms still have to get up at least every 3 hours to pump, and grieving the pregnancy you didn’t get to finish is a very real thing.

NICU moms may be experiencing sadness and may blame themselves for their babies’ hospital stay. Comments suggesting there is a “silver lining” to a NICU stay or delivering early can be insulting. They may be having trouble sleeping because of worry and the fear of the NICU calling in the middle of the night.

nicu discharge“When will your baby….?”
Whether you’re asking about coming home, eating solids, or walking, avoid comparisons at all costs. Many times babies come home about the time of their due date, but a whole host of medical factors may be involved. Consider avoiding this question altogether unless it’s offered. It’s important to know that NICU babies grow at their own rate and reach their own milestones on their own time. Each is unique and not the same for term babies. Asking when they are “caught up” or “normal” is a no-no.

“She is so teeny!”
It can be jarring to see a very tiny baby hooked up to medical equipment for the first time. Consider carefully what you say.  Skip references to baby’s size, as babies born early won’t look the same as newborns. You could instead focus on the family resemblance that you see. “She is beautiful. I can tell she has her mama’s curly hair.”

“Aren’t you being paranoid?”
Parents who bring home a medically fragile child may have been given special rules by medical staff to avoid crowds and public gatherings to give their baby time to build their immunity. They may ask you to wash your hands more than most, ask you to stay away if you are ill, or be absent from social gatherings for an extended time. They are doing these things to give their child the best chance at health. Please respect their boundaries without complaint.

“Everything happens for a reason.”
Please refrain from using this statement when you don’t know what to say. It doesn’t help explain why things happened the way they did. Instead acknowledge the pain or sadness the family may be experiencing.  “I don’t know what to say but want you to know that I will be here for you.”

What to say instead

“Congratulations!
It’s tough when a baby comes early or has complications. There’s usually not a card for that at the Hallmark store and parents may be dealing with grief that they did not have the birth experience they expected. However, acknowledge the birth of their baby and think of ways to help them welcome baby to the world. Could you arrange some photography they may cherish later? A small toy or stuffed animal to welcome their child, a card, or even a thoughtful preemie outfit when they are big enough can be a sweet response.

“Can I help with ____?”
Despite a child’s hospitalization, bills must be paid, pets must be fed and older sibling must be cared for. Consider specific ways you can help such as offering gift cards for gas, watching older siblings, arrange lawn care or housecleaning, organize a meal calendar, and bring snacks or a care package.

“I’m here if you want to talk.
Emotions can be up and down in the same day. Give families space to express their feelings. The NICU is not called an emotional roller coaster for nothing.

“I’m thinking of you
Having a child in the NICU for a short or long stint can be isolating. Emails, text messages and other supportive messages can be so uplifting. Checking in is always a welcome sentiment.

“How are you / is your baby doing?
Ask how they and their baby is doing, then allow them to respond if they wish. Don’t compare, just listen. It’s okay if you don’t know what to say.

“May I pray for you?
If prayer is part of your tradition, offer it.

 

Friends and family members in the NICU need your support more than ever, and it’s not uncommon to not know what to say. The most important thing to remember is that they just need to know you are there and willing to listen if they need a shoulder to lean on.

This page's content was last updated on Apr 5, 2018 @ 4:10 am