The NICU, Part 3: What not to say to a Preemie parent
Note: I’m indulging in a not-so-skeptical post today, but I’m including Star Wars Lego pictures, so that makes up for it a little, right?
When my children were in the NICU, many people were often at a loss for what to say, while others spoke without thinking. Sometimes, that resulted in comments that ranged from hurtful to funny, and we would laugh darkly about them in the parents’ lounge. Eventually, I compiled a list of the most ridiculous.
It’s hard to know what to say to a parent of a preemie, but if you haven’t made any of the comments below, you’re off to a pretty good start.
They just need to grow, right?
It’s never a matter of just growing. It is a slew of body systems that just don’t work, and they continue to not work as well as those of term babies for years. The real question here is what needs to happen before your baby can come home. So ask if you want, but be prepared for a long answer.
Did they live?
Seriously? Our social worker asked this a day after my sons’ birth when their probability of survival was still around 5%, and it was hard to hear. Asking how the babies were doing would have answered the same question more kindly.
Oh my god! Will they be ok?
Really? Were people seriously asking someone who’s baby is in critical care to reassure them?
I’m sure he’ll be fine!
No, you’re not. Neither are the trained specialists working their asses off to keep our babies alive. I think the word people were looking for was “hope,” as in “I hope he’ll be fine.”
“Enjoy sleeping while it lasts!” or “You’re lucky that you get to ease into parenting–no late nights for you.”
I had two children. They were both in the intensive care unit of the hospital. How much sleep did people seriously think I was getting? Add to this that for some of the time a baby is in the NICU they are frequently fighting a life-or-death struggle, in which case sleep is not on any parent’s mind.
I wish I had nurses to change my baby’s diapers!
First, don’t get me started on how this minimizes the difficult work that nurses do keeping babies alive, because that rant could go on for days. NICU nurses are a breed apart.
Second, changing diapers was the only time I got to touch my babies. Seriously, take a moment to remember holding your baby, brushing your child’s hair back from his face, kissing her forehead. I couldn’t do any of those things. I spent 8-12 hours each day in the NICU for the chance to maybe get to touch them both once, which happened only when the nurses were taking their vitals and changing their diapers. If the nurse let me, I got to help. If the nurse was in a hurry, or a baby was having a bad day I’d miss out on my only chance for physical contact with my baby that day.
A least you don’t have to worry about the baby weight.
Talk to most preemie mothers, and they will tell you that we would gladly get big enough for our own orbit if it meant their babies did not have to go through this hell. And yet I heard this comment over and over, along with its cousin “wow, I’m surprised you haven’t lost the baby weight yet. You were barely pregnant” (bonus points for fat-shaming, there).
You’re so lucky you didn’t have to deal with bloating/incontinence/stretch marks, during that 3rd trimester!
I get it, the third trimester sucks. Does it suck worse than losing your baby? No. Does it suck worse than REPEATEDLY watching people resuscitate your child? No? Does it suck more than watching your child fight for each minute and hour on this earth? No? I could go on. Easily.
(*gasp*) You’re not breastfeeding? That’s tragic! (or “The golden hour is SO important!”)
I am a huge fan of breastfeeding, but it’s important that breastfeeding advocates understand that micro-preemie families have a much higher bar for “tragedy” than that. As for the golden hour, that ship has long sailed. Keeping comments about breastfeeding neutral or non-judgmental (“So, how does nutrition work with preemies?”) would have been better.
I would NEVER feed my baby formula! (or “I can’t believe your letting them give your baby formula” or “Formula is poison!”) There is a whole movement of people who think doctors and hospitals are shills for formula companies and that all formula is filled with deadly chemicals. The truth is that micro preemies only survive to be big and healthy enough to breastfeed if they get weeks of TPN (Total Preemie Nutrition), which is full of those scary chemicals. They get breastmilk fortified with formula through tubes long before they breastfeed. By the time you’re discussing feeding a preemie, that child has been ingesting chemicals for weeks if not months.
“I couldn’t do that. . .I just don’t trust doctors.”
First, you probably COULD do that because when you’re in the situation, you have almost no choice. Sure, there were the babies whose parents avoided the hospital like the plague, and in many families (like ours) one partner was rarely present, but for the most part once you have a kid in the hospital, you do what you have to do.
Second, as someone who has to put all their trust that those doctors will keep their kid alive, perhaps a preemie parent doesn’t need to hear about hatred of doctors, modern medicine, or horror stories about either.
“Go home and get some sleep.” or “Do something to take your mind off it!”
I’m sure this is said out of concern or love, but for many NICU parents, the world narrows down to the small space next to the isolette and time shrinks to only the present. Being any further away physically just means you’re less likely to be there in an emergency or if your baby passes away. When your child lives breath to breath, thinking about the future is scary and sad. Oh, and trust me. . .nothing takes my mind off of my child.
The opposite of these statements is equally unkind. Some parents have a difficult time at the NICU, and prefer not to be there every minute of every day.
This is all part of God’s plan. or “God wouldn’t give you what you couldn’t handle.”
Really? so because God thinks I’m a tough cookie, he put an innocent baby through months of misery. How is this reassuring?
What happened? (or “What did you do wrong?”)
It still floors me how often I heard this question. There are many reasons a baby comes early that it’s tough to guess. Further, NICU moms feel guilty as it is. Sure, the guilt is completely irrational in most cases, but it’s still there. This comment comes off as ignorant to the point of being funny when people add things like “you shouldn’t have gotten that flu vaccine!” or “I would never run while pregnant.”
“They say the best things come in small packages!”
Don’t minimize the consequences of being a micro-preemie. It’s just not helpful. Twenty-one months later, my smallest son still can’t manage to get on the height and weight chart for his actual age. I’d give my eyeteeth to get that “small package” to grow a little larger.
“I know what I’d do. . .” (or any criticism of the parent’s decisions)
You’re gonna have to trust me on this one. You don’t know unless your child has been in a life or death situation 24/7 for months. You really don’t.
When will they be home?
Really, when you’re talking about micro preemies, that question for the first few weeks is “will they live?” Which means you should probably not ask this question at all.
Try this instead: “Tell me about him/her.” (really, even very young babies have personalities that shine through and do goofy things. I have a son who somehow managed to pee on his nurse through a porthole. . .twice. . .in one day. Give the parent a chance to share those stories with you.)
But they look so (sick, small, red, skinny, scary)!
Yes, yes they do. This was annoying to hear, but so much better than the face people made when they looked at pictures of a skinny red preemie in an isolette (or when they cried. . .that was just awkward).
My son was a preemie too! Born at 37 weeks, he had to spend 3 days in the NICU. I totally know what you’re going through.
I am so sorry that you had to be a NICU parent, but 37 weeks is only a preemie under guidelines designed to discourage doctors from performing c-sections of convenience. So unless there’s a life-threatening addendum to that statement (“because he needed heart surgery”), it’s not the same. That doesn’t mean the parent can’t sympathize, since any birth complications are traumatic. Just be ok with the fact that it’s not the same. I am fond of the phrase “that’s a whole different kind of hard” because it’s true.
“Oh please! People have babies early all the time.”
Yes. Yes they do, and even with amazing medical care, most babies born at 24-27 weeks die. Some people suck. Don’t be one of them.
Isn’t it hard to be back at work with your baby in the hospital?
Yes it is, and this is probably not the best thing to say to a parent trying to hold him or herself together until the end of the work day.
What will you do if he has (awkward pause) problems?
I’ll be his mom. Really. What do people think preemie parents are going to say, that we’re giving them back?
And my personal favorite only goes to preemie parents of multiples: “Well at least you have two, right?”
If I’m interpreting this correctly, they were saying that I was lucky because if one baby dies I would still have the other. WTF? I heard this more than once, and never did come up with a snarky or clever reply.
Of course, if you’re reading this, chances are you’re the kind of person who wants to say or do the right thing, for a friend or family member who’s become a preemie parent, which means you probably won’t say any of the thoughtless comments above.
So, what should you say to a parent of a micro-preemie?
I don’t know, but here are some ideas.
When you are faced with a photograph of a preemie (or any other sick child) please look past the medical equipment and see the child/baby. When in doubt, do what you would for any other parent: tell us our kid is cute/beautiful/strong. . .because they are.
Sometimes the enormity of a newborn in such a frightening position is overwhelming but, please know that however scary it is for you, it is much worse for the parent whose child is in the hospital. Just acknowledging that the journey is tough, and ensuring that the parent knows that you are there for them during it is plenty. Other than that, be there. Words aren’t important; your presence (in person, via telephone, text, Facebook, Twitter, or email) is.
This is part 3 of a series on being a NICU parent. Part 1 can be found here, and part 2 can be found here.
All images in this post are by the talented Kristen Alexanderson, and can be found on her Flickr page. Featured image is by Andre Mouraux, from his Flickr page.