Hand to Hold's Official Blog: Written by Parents for Parents

6 Things NOT to Say to a Preemie Parent (and What to Say Instead!)

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.

Amy Carr About Amy Carr

Amy Carr (TX) is a parent of a late-term preemie, Ella, born at 35 weeks. After an uneventful pregnancy, Ella's early birth and the complications that followed were a shock. Now in elementary school, her daughter is doing well and Amy enjoys using her writing, marketing and communications acumen on behalf of nonprofits and charitable causes. Formerly a founding staff member at Hand to Hold, you can reach Amy via email.

Comments

  1. Susan Hundley Sullivan says:

    This is such a wonderful article, Amy! When our twins suddenly started to deliver at 24 weeks, the first phone calls were too much to handle – everyone was shocked and concerned, so said all the wrong things. Except for my sister. She was the voice of calm reassurance that I needed. Labor was stopped for 10 days and then our identical twin girls were delivered. Throughout the 10 days in the hospital before delivery and the twins 96 NICU stay, my sister became my confidant. She NEVER wavered in her ability to listen as I shared the scary times and ALWAYS cheered the tiniest accomplishment! To this day, 28 months after the twins birth, I know I would have never made it without her. My sister told me recently that she was so scared during this time, but knew she had to be the one that remained positive and strong for me. Just to know that no matter what, I had her telling me that we were blessed with two fighters and she believed we would take home two healthy babies, meant everything. We did leave with our two miracles – absolutely perfect in every way. Now, as 28 month olds, except for 2 – 3 months delayed in speech and on the small size, they both test at actual age or above. I can never thank my sister enough and hope everyone with a preemie has someone like her in their life!

  2. Thanks for sharing your thoughts on prematurity.
    Regards

  3. Excellent post! Our son is four years old and people keep asking when we can stop using the feeding tube. They think I know this?

    One other that befuddled my wife in the NICU.
    Mom of term-baby in NICU for seizures: “How’d you lose the baby fat?”
    Miri, who had a 22-weeker: “Uh… I never had it.”

  4. I have to tell you that I am not religious in any way, and if someone offfered to pray for me I would find it offensive. If you believe in God, and would like to pray for someone, then please do so, or if you know that their beliefs are the same as yours then it would be okay to ask. Otherwise, there is no need to talk about it.

    • Hi Ozzy. That’s why we recommend asking, instead of outright offering. By asking, you open the doors of communication, especially in cases where you aren’t sure if someone has the same religious beliefs. I would advise answering with a simple but polite “no thank you” if you prefer they not pray for you. Emotions run high for everyone in the case of premature birth, and most people are only trying to do what they feel might help.

  5. People have been giving us advice since day 1. We keep track of the baby’s feeding schedule, him going #1 & #2 and how much he eats daily. When we ask our baby’s caretakers to do those things, some of them don’t seem to like it very much. We have heard so many unsolicited advice such as “he is normal now”, “don’t be paranoid”, “don’t be overprotective”, “treat him like a normal baby”, etc. Usually comments are given by those who have a few fullterm babies. All the sudden, they are the experts of my child and it makes me feel so “stupid” and hurt. They think that my child can go to public places because he looks like a chubby little dude now and “getting little sick will build up his immune system”. If one more person tells me that my baby is normal and I should act normal, I feel like I would scream. This is definitely not the most appropriate way to vent. My husband and I have had to deal with these situations so often and we are not sure what to do anymore. We try to be positive and kind. We just want others to respect the way that we want to take care of our baby. It is getting heavier and heavier, we are just running out of options. People do mean well, sometimes it is just hard to listen to judgments about us being too paranoid. We told them the doctors said the baby would need extra care, people just disregarded our concerns and told us that “he is just fine”. What can we do???

    • That is indeed frustrating, Tiffany. For strangers, I just smiled and went on my way. For family, it can be a little more difficult, but I think what you said already is perfect: “I need you to respect our decisions the way we are taking care of our baby.” If they are open to it, send them research and information on preemie development and the importance of protecting their fragile immune systems. I hope this helps a little, Tiffany.

    • I know I’m about a year late with this post…:) But I have to say that I had the same experience and there was one point that I just stopped answering phone calls and talking to people. I just had enough. I seriously toyed with the idea of creating a separate voice mail or separate phone line as the Advice Inbox. People could leave messages with advice and comments to their hearts’ content – as long as I don’t have to listen, agree, explain, defend myself….
      One thing I found really helped me was “venting” in some way – for me, I enjoy writing so I got it all out on paper (actually, the computer). It wasn’t taking it out on other people, but it really made me feel better. I even wrote a really sarcastic FAQ that I would have loved to hang up in my house for people to reference before they asked me those questions (“Do you really have to be so careful with….?”) – I never shared it with anyone but writing it gave me lots of laughs and made me feel better.

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