Tuesday, April 23, 2019

6 things not to say to NICU parents

This post is by Kelli Kelley, founder and CEO of the nonprofit Hand To Hold. After delivering her son Jackson at 24 weeks, Kelli felt alone and overwhelmed, despite being surrounded by family and friends. She went on to start this peer support network for NICU and bereaved families. Resources include in- hospital programs, articles and blogs, podcasts, social networks, and trained peer mentors. All were designed with the emotional, physical, and social needs of the whole NICU family, including siblings and grandparents. Here, she shares six things never to say to NICU parents. 

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.

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.

What 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 post is from Hand To Hold. Image: Flickr 


  1. I'm saving this one. Sometimes good-hearted people can be socially awkward enough to say those "what not to say" because they are the first things that pop into their minds. Memorizing the list of what to say instead can help a lot.

    And, these what not to say/what to say can be applied in other situation as well. For example, asking "why" when someone reports a death by suicide is entirely unhelpful and never known. Unlike a birth, of course there is no celebration in a death, but "I'm thinking of you", "I'm here", "Can I help you with xxxx?", "how are you doing?" always apply and are always better.


Thanks for sharing!

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