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 list to guide you when someone in your life unexpectedly delivers early or has 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 want to ask most.

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. Acknowledge the birth of the baby and think of ways to help them welcome baby to the world. 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.

What not to say: “At least…”
Comments suggesting there is a “silver lining” to a NICU stay can be insulting. 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 three 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 baby’s hospital stay.

What to say instead: “Can I help with ____?”
Despite a child’s hospitalization, bills must be paid, pets must be fed and older siblings must be cared for. Consider specific ways you can help such as offering gift cards for gas, watching older siblings, arranging lawn care or housekeeping or organizing a meal calendar or a care basket.

nicu dischargeWhat not to say: “When will your baby…?”
Whether you’re asking when they will come home or when they’re expected to catch up to their peers, avoid comparisons at all costs. It’s important to know that NICU babies grow at their own rate and reach milestones on their own time. Each is unique and not the same for term babies.

What to say instead: “How are you? / How is your baby doing?”
Ask how they and their baby are 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.

What not to say: “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.

What to say instead: “Your baby is beautiful.”
Focus on the positives. Point out family resemblances, expressive eyes or other defining characteristics.

What not to say: “Aren’t you being paranoid?”
Parents who bring home a medically fragile child have often been given special instructions 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 they may be absent from social gatherings for an extended time. It’s important to respect their boundaries.

What to say instead: “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 and giving the family the freedom to respond in their own time is always a welcome sentiment.

What not to say: “Everything happens for a reason.”
This is a common statement among those who don’t know what to say, but it can be quite hurtful. Instead acknowledge the pain or sadness the family may be experiencing.

What to say instead: “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.

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 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 Feb 27, 2019 @ 10:04 am