Preemie Etiquette—What to Say, Do, Give, and Avoid

Do you know the best way to help your loved one with a Preemie in the NICU?

Have you ever tried to say the right thing, and ended up saying exactly the wrong thing?  

We've all done it one time or another, and it's no fun for you or for the other person. 

If your friend or loved one has a baby who was born prematurely, you may be wondering just how to handle it gracefully, thoughtfully, and helpfully. This guide is here to help you know just what to say, what to do, what to give—and most importantly, what to avoid. 

1
Understand the Stress of Having a Preemie in the NICU

First things first—you need to understand just a couple of basics when you have a loved one with a preemie.

Some preemie babies are born extremely early and are in very critical condition, struggling to live. Other preemies are born just a few weeks early and are pretty healthy, they just need a little time to grow before going home.

The most important thing to keep in mind is this—having a baby in the NICU is incredibly stressful, regardless of how sick the baby is. Even if the baby seems "fine," even if the baby isn't all that early or all that tiny, parents find it incredibly stressful to have doctors and nurses take their baby to an ICU.

In the NICU, many parents can't hold their babies right away, their babies have monitor wires on them, possibly oxygen tubing, IV tubing, breathing machines and more. This is definitely not how anyone wants to see their sweet, innocent newborn.

In the NICU, parents aren't the ones caring for their babies, the nurses are. They usually have to ask permission to pick up their own baby, and they're afraid to touch because there are so many machines and wires and tubes.

We won't go into all of the details about why this is an incredibly stressful time, but just be sure to remember this in your dealings with your loved one. Even if they seem to be holding up just fine, and even if the baby seems fine, they are most likely feeling very stressed, worried, angry, guilty, sad, helpless, and more. So being sensitive to this, and thoughtful about what you say, do and give, will be a huge relief to any NICU parent.

2
What to Do for Preemie Parents

Preemie Mother holding premature baby in NICU
Getty Images / Amelie-Benoist

Some wonderful ways to offer that support are:

  • Listen - The single most important thing you can do for your friend or loved one is to listen. Really, really listen. Ask questions that let the parent decide how much detail to go into.
  • Learn a little about the NICU - I already explained a bit about how difficult the NICU is, but you could spend just a little time learning more. You don't need to go overboard and try to become an expert. Trust your loved one—the preemie mom or dad—to be the real expert on their baby and their NICU. But by learning about what the NICU is all about, you won't burden them by asking some of the common questions that they've probably already had to answer over and over again. Here are some short & simple articles that will get you started:
    What to Expect When You're Expecting a Preemie
    The Best Online Preemie Resources
    10 Things Your NICU Nurse Wants You to Know.
  • Offer to create a Caring Bridge. This is a great way for parents to share updates with loved ones without having to keep telling their story over and over again. 
  • Offer specific help. Can you make a dinner? Tell them you're making a dinner. Can you babysit the siblings? Tell them you want to babysit. Can you drive mom to the hospital? Tell her you are planning to give her a ride, with specific dates. The bottom line is this—don't leave it up to mom or dad to come up with the help they need. You figure out what you can do and then offer it. It simplifies their life so much. Need some suggestions? You could offer to:
  • Run errands
  • Babysit siblings
  • Drive mom to hospital (after C-Section moms can't drive for weeks)
  • Cook a meal
  • Do the dishes
  • Wash laundry
  • Clean the house, or hire a house cleaner
  • Offer to come sit at the NICU with mom or dad
  • Consider Donating Blood - Did you know that some preemies end up needing blood transfusions? While your blood usually can't be donated specifically for any one particular individual, it is a very thoughtful way to give something truly useful back to the community.

3
What Not to Do for Preemie Parents

Premature baby holding NICU dad finger
Getty Images / Agence Photographique BSIP
  • Most importantly, don’t avoid your friend because you don’t know what to do or say. An email, a phone call, even a text message saying you're thinking of them is better than nothing. And it's perfectly fine to say "I honestly don't know how what the best thing is to do right now, but I want you to know I'm thinking of you."
  • Don't make it about you - Don't talk on and on about your opinions or experiences. Even if you had a preemie or know someone who did, even if you've suffered some other tragedy, wait until you're asked about it. Let them be the center of your attention.
  • Don't insist on visiting the NICU - Some parents love having visitors, others hate it. The only way to know is to ask. But if a parent doesn't want you to visit, don't take it personally and don't push the issue. 
  • Don't ask "what can I do to help?" Parents are so overwhelmed, they can’t decide, they often can't think of what they need, and don’t necessarily want to ask. So you take the time to figure out what you can do, and then offer 2 or 3 specific things you want to do, like the suggestions outlined above.

4
What to Say to a Preemie Mom or Dad

Preemie mom looking at premature infant in isolette
Getty Images / Agence Photographique BSIP
  • "Congratulations!" ​Some people feel as if there's nothing to be happy about when a baby is very sick, but then again most parents do want to feel joy around the birth of their baby. So if you can say it with some sensitivity to the seriousness of the situation, it's a great thing to say.
  • "Wow—look how adorable she is!" You may not actually find the preemie to be super adorable, because they can in fact be very fragile-looking, maybe even downright frightening. But find something cute—a sweet button nose? A hint of a dimple? Eyebrows that look like dad or hands that look like mom? Focus on that. 
  • "How are you holding up?" This is such a welcome opportunity for preemie moms and dads to open up about whatever they're feeling. They might be feeling happy, they might be feeling scared, but an open question like this allows them the chance to feel heard.
  • "Tell me all about your baby."
  • "This must be really hard." An open statement like this allows parents to say as much or as little as they want, yet it shows you understand the struggle they're going through.
  • "If you are up to it, I'd like to hear how your baby is doing medically." Some parents just hate having to go through all the details, but others are craving someone to share it all with.
  • "We can talk about something completely different if you're not up to talking about preemie & NICU stuff right now." Giving permission to avoid it altogether is a huge gift. Even though having a preemie can totally take over a new mom or dad's life, they also appreciate an opportunity to think about something else every now and again.
  • "I wish I knew what to say, but I really don't. I want you to know I'm thinking of you and your baby." It's ok not to know the perfect thing to say. It's very refreshing, actually, to be real and be honest.

5
What Not to Say to a Preemie Mom or Dad

Preemie mom holding preemie baby in NICU
Getty Images / Matt Carr

Some comments that preemie parents hear may seem innocent enough. Others are just awful.  These are some examples of what NOT to say:

  • "At least you didn’t have to gain all that weight." Watching a preemie struggle to live, having to go home without your baby, having to hear scary diagnoses and worrisome statistics is in no way a good trade off for extra weight. A statement like this belittles just how serious it is to have a preemie.
  • "At least you can sleep through the night." Nope, preemie parents are not sleeping well. Why not? So many reasons. For starters, parents are often too scared to sleep, fearing a phone call in the night that their baby is having trouble. Or else they have to wake up throughout the night to pump milk, store milk, wash pump parts—which is nowhere near as wonderful as cuddling and feeding a healthy baby at home.
  • "He's so tiny!" This drives preemie parents crazy! They are very aware that their baby is small and they really don't like the reminder. Focus on something else wonderful about the baby instead.
  • "But you have the world’s best babysitters!" New parents don't want to have babysitters for their baby before they've ever even had a chance to bring their baby home! You may mean it in a positive way, to help them feel good about the care their baby is receiving, but it's still very sad to parents that they aren't the ones taking care of their newborn baby.
  • "Will the baby be OK and normal?" Can you imagine someone asking this about your baby? This question is terribly insensitive, and just reminds preemie moms and dads that the outcome for their baby is uncertain and worrisome—a reminder they definitely don't need. They're worried about it all the time.
  • "You’re so strong." This comment seems harmless to many people. It really does. But preemie parents say time and again that it's frustrating, because they don't feel strong, they don't want to have to be strong, and they don't what to have to pretend to be strong. 
  • "What did you do wrong?" Seriously, people really ask this. And while they may mean no harm, how could it do anything but add to the enormous guilt and sadness parents already feel? Please just don't say it or anything like it. They already feel guilty, even if there was absolutely nothing they could do to prevent it.
  • "How do you leave your baby at the hospital?" The answer—it's the most heart-wrenching thing anyone has to do, particularly mothers. It goes against every fiber of their being. Many moms cry—a lot—every time they have to leave their babies. Please don't ask them about it and remind them of the worst part of their day.
  • "Everything happens for a reason." No parent can really see a good reason for the suffering of their baby.
  • "God doesn’t give you more than you can handle." When a baby is in the NICU, it feels that it IS more than a parent can handle, and it can push the most faithful to question their faith. Unless you and this preemie parent discuss God and religion regularly, don't bring it up now.
  • "When will your baby come home?" This seems like another harmless question. Parents wonder about this every day and, unfortunately, they do not ever know when the baby will be coming home. Some parents have been told a rough estimate about when the NICU thinks the baby will be ready to go home, only to find out that something has changed and the baby can't go home until later.  Some parents worry that their baby will never come home. It's just a huge stressor for parents, and until the actual day of going home, they just don't know the answer.  So don't ask.

6
What Gifts to Give Preemie Parents

Baby in hospital humidicrib with concerned nurse
Matt Carr/The Image Bank/Getty Images

In many cultures, new babies are greeted with gifts—insanely cute baby clothes, soft swaddling blankets, cuddly stuffed animals, beautiful artwork for the nursery, creams and bottles and strollers and so much more. It's a significant way we all celebrate when babies are born.

Yet when a baby is born prematurely, many people don't know what to get—or if they even should get anything. Preemie parents, who are already sad and worried beyond belief, find their sadness multiplied when their new baby isn't welcomed the same way most babies are.

It's not about greed and wanting stuff, but more about craving the experience and the normalcy, wanting something to feel positive surrounding the birth of their child.

So please don't avoid giving a gift to new preemie parents. Just be thoughtful in what you choose. Because some gifts are more appropriate than others. These are all good choices:

  • Preemie clothes - This fun, cute, "normal" baby gift is one that can be used just as soon as the baby is strong enough to wear clothes, which is usually well before the baby leaves the NICU.
  • Decorations for the NICU space - Many parents don't even know they can decorate the hospital bed. Giving them gifts of art & blankets, even just words of encouragement to tape on the wall is a wonderful way to show that you understand.
  • Baby books - It's great to have something to read aloud to a baby in the NICU.
  • Gift cards - Having a baby in the NICU is a pretty big financial burden, thanks in part to actual medical costs, costs of driving to and from the NICU, child care expenses for siblings, hotel costs if needed, meals eaten while out at the NICU, and so much more. By offering gift cards at useful places like gas stations, local restaurants, grocery stores and such, you're really showing that you understand.
  • Gifts for mom and dad - A thoughtful necklace or bracelet for mom, a gift certificate for a massage, a gift basket of toiletries to use when away from home, yummy snacks, books to read—all of these make great gifts when you're not sure whether you should get something for the baby.

More »

7
What Gifts Not to Give Preemie Parents

NICU mom and NICU nurse looking at micropreemie in isolette
Getty Images / Agence Photographique BSIP
  • Flowers - Many preemie parents report that flowers remind them of a funeral. So unless you know this family will love them, it's better to avoid it.
  • Newborn-size and bigger size clothes - Whether the fear is reasonable or not, many new preemie parents fear that their baby won’t survive long enough to make it to that size. And it's just a reminder of how far the baby is from "normal." So save these gifts until the baby is actually able to wear them.
  • Stuffed animals - While it's ok to give them, most NICU's won't allow them in the bed with the baby. So either ask first, or look for a gift that can be used during the NICU stay.

Continue Reading