What to say to anyone who has a baby in the NICU

A friend delivered twins early. One is in the NICU, one died. What can I say or do?

This question was sent to me via Twitter. The person who added my name to the tweet knew that I might have something to offer because 10 years ago I was that friend. I entered the hospital with ruptured membranes at 22 1/2 weeks, pregnant with triplets. My son Aidan died at birth and my surviving two boys, Oliver and Victor, had a long and complicated course in the neonatal intensive care unit (NICU), because that is pretty much the only road for babies born at 26 weeks.

I started to write a response, but stopped several times. I just couldn’t capture what I needed to say in 140 characters (and what I have to say really applies to anyone who has a baby in the NICU, whether they have lost a baby or not).

What not to say or do:

  • Do not say you are sorry or that you know how the parent must feel. Sorry is so ineffectual and you can’t know how someone feels who is trying to navigate mourning the death of their child while trying to rally enough personal resources to hang on for dear life to the roller coaster ride through the antechamber of hell that is the NICU. Even if you have been there, like I have, you can’t know what it feels like for someone else.
  • Do not ask for any specifics about the delivery or the circumstances that culminated in the delivery. They are horrible enough to go through as a parent, never mind re-live so you can tell someone else. It drove me nuts when people wanted to know the unique, but none the less horrible, terrible, life-fucking-changing events that caused me to deliver in the way that led to death of one of my children and the terribly unfair start to life for my other two. Listen yes, ask no.
  • Do not ask how the surviving baby is doing. If the baby is doing “well” they might feel strong enough to volunteer, but it rips your soul apart to report that your baby isn’t doing well (imagine doing it over and over again?). It is even hard to talk about a typical start to the NICU, which for an extremely premature baby means oscillating minute by minute between surviving due to all the advances of modern medicine and alarms that bring everyone running.
  • Do not say, “Well at least you have another one,” or some variation thereof. That was said to me. Really. Having a child does not make the death of another child any easier and it really diminishes the life of the baby who died. My son lived for 3 minutes and those 3 minutes were a lifetime for me.
  • Do not offer medical advice or critique the medical care. It doesn’t matter how much you know or think you know about premature babies, it is unlikely that you have enough information and education to offer a medically sound opinion. Causal comments such as, “Isn’t all that oxygen dangerous?,” or “That’s a lot of chest x-rays,” create doubt, cause more worry, and can lead to conflict. Remember, in addition to bonding with her/his baby your friendhas to bond with the NICU staff.
  • “He’s so small.” I wanted to punch people who said that. “Really, I’d never noticed, thanks ever so much for pointing it out and you know it doesn’t worry me at all.”

What to say and do:

  • “That must be so hard for you,” or a variation. Nothing you can say will make it better, so don’t try. And it is so hard and that should be acknowledged. You can say this phrase in almost any situation.
  • Learn to listen. If specifics are volunteered, and some people do need to talk , just listen and hug if appropriate.
  • Offer to look after things around your friend’s house. In fact, help organize a team of people to help. Lawns need to be cut, dogs walked, cats fed, mail collected, and laundry washed. It is so hard to do any of that when you want to be at the NICU every waking minute, never mind while you are mourning your child. This is especially critical if there is another child at home. Offer to take any children at home out for playdates, arrange sleep overs, drive them to school etc.
  • Offer food. If they are sleeping at home stock their fridge or drop off a pre-made meal. If they are living at the hospital or a Ronald McDonald house give gift cards for local restaurants.
  • Offer to be a point person. Relatives and friends want information, but it is hard to do especially when the information might not be good (see above). You can say something like, “People will be asking for updates because they care. I can help you with that.” You could forward the e-mails to me and I’ll reply for you.” You can also offer to set up and/or maintain a CaringBridge account with details or Facebook page if they are the Facebook type. Not everyone wants to share this way, but some do.
  • Send a gift. Just because a baby is in the NICU doesn’t mean that birth should be less recognized. Not one person sent a baby gift while Oliver and Victor were in the hospital, they all waited for the shower which was held the day before discharge. People hold back thinking, “What if I send something and then their baby dies? Won’t that make it worse?” Trust me when I say that an unused onesie does not make your baby’s death harder to deal with. Send a small stuffed animal or preemie clothes (this would be an ok time to ask about weight, because if the baby is 1 or 2 lbs a 4 lb outfit won’t fit). The dearest thing to me is the stuffed bear that a nurse put in the crib with Aidan. Not a week goes by that I don’t take it out of the drawer and hold it.
  • Ask to see pictures. You would do that for any newborn. Preemie parents are ostracized enough, so offering tiny bits of new parenthood normalcy is priceless. Parents don’t just see tubes and wires, they see their precious baby and you should too.
  • Donate blood. This is a very personal gift that you can give even if you live far away. Send a small card with a note saying you donated blood in honor of the babies. Mention both names if you know them. Many preemies need blood transfusions to live and the parents will know that their baby’s survival depends on the good will of blood donors and so it is such a wonderful gesture.
  • Get vaccinated for pertussis. Preemies are especially vulnerable to whooping cough. You should do this if you live close or far away. If you live far away you can send a little note with a gift card or stuffed animal and add that you got vaccinated against pertussis to help protect all preemies and you will encourage all of your friends to do the same.
  • Send a book on prematurity. It didn’t even occur to me to look for one. BIAS ALERT — I wrote a book, The Preemie Primer. I think it’s an awesome book, but there are other books. When I finally got around to reading the few books on preemies it was clear they weren’t right for me, so I wrote the book that I would have wanted the day I walked into the hospital with ruptured membranes.
  • Stick around. The NICU course is long and many friends flame out after the first bag of groceries.

What can you say or do?

A lot.

Jennifer Gunter is an obstetrician-gynecologist and author of The Preemie Primer. She blogs at her self-titled site, Dr. Jen Gunter.

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  • guest

    These are nice suggestions, but they are what would have worked for you, not necessarily others. Other people would not mind at all hearing a friend say “I am so sorry,” or might have hated receiving baby gifts for a baby in the NICU. I personally would have felt embarrassed to receive gift cards to a restaurant. Not all people are alike.

    Also, many of these suggestions are suitable for close friends or family, but not acquaintances who may not truly have the time or energy to provide meals or household help to a non-intimate friend. Organizing meals for another person is a nice idea, but too often, people feel obligated to do it by pieces like this, which imply that expressing sympathy is not enough. They have good intentions but the execution can end up feeling sloppy or resentful to the recipient.

  • Lizzie

    I never had a baby in a NICU – thank God, our twins were full-term – but I did lose three pregnancies, and my sister had to have a complete hysterectomy at age 22 due to recurring ovarian, cervical, and uterine cancer. Both of us agreed that one of the things people said that drove us both nuts was “You’re so strong; I could never go through what you’re going through,” or anything along those lines. Because, long story short, yeah, you could. You could if you had no choice, like we did. We were no stronger than anyone else and what were we supposed to do? Curl up and die? We got through it because we had no alternative, not because we were strong. And the people saying this to us would have had to do the same thing, had they been in either of our positions.

    We understood that they meant well, but after hearing it enough times, it really started to grate.

    • azmd

      Again, this is all highly personal. When I have had friends say to me “Wow, you are so tough, I can’t believe how well you are handling all this,” I have personally felt that that was helpful to hear, since it validated that I was coping well and could be proud of that accomplishment. We’re all different, which is why trying to establish guidelines for “what to say and what not to say” is a little futile. And to the extent that it inhibits people from trying to be supportive (for fear of saying or doing the wrong thing), it can have the opposite effect from what is intended.

      • Lizzie

        It wasn’t the “You’re handling this really well” part that bothered us. It was the “I could never do what you’re doing” part. It’s a remark that implies that the people who are in that situation have a choice, or that we’re selected because we’re tougher or stronger or something. Some people did phrase it as “You handling it so well,” and that was okay. The “I could never do it” wasn’t really okay. Because, obviously, they could. They just didn’t have to. And we both would have strongly preferred not to have had to.

  • azmd

    Honestly, I think an important piece of advice for parents in this situation is this: Try to maintain perspective so that you don’t become bitter about people not being there for you, or not being there for you in the ways that you wish they could. Try to be grateful for your friends and whatever it is that they are able to do. If you spend time feeling bad that friends “flame out after the first bag of groceries,” it’s using up precious internal resources that you need to be focusing on yourself and your baby.
    Also, try to remember that these days, we can’t expect too much from the community. People are preoccupied with their own sorrows. We live in dark times, as evidenced by a suicide rate that is rising so rapidly that the CDC has termed it an epidemic. How many of us know someone who is struggling with an autistic child, a soul-destroying job, an elderly parent in another state, a chronically unemployed spouse or some serious medical condition of her own? These situations are all stressful and sad, just like having a baby in the NICU, with the difference being that having a baby in the NICU is more high-profile and tends to elicit more offers of help from the community. A parent with an autistic child rapidly discovers that it’s a sad, lifelong slog that few people can relate to; there is rarely so much as an offer of even a bag of groceries, let alone household chores, dinners, gift cards or skillful empathic listening.
    Try to remember that people mean well, that they want to help and that whatever it is that they are doing is likely what’s realistic for them to offer.

    • Suzi Q 38

      Good points.
      Some people are busy, or can’t handle tragedy.
      They sometimes go into “hiding.”
      Also, if they had difficulties, were you there for them?
      These are difficult questions to ask ourselves.

      I had assistance after my two major surgeries. I realized though that some of the people were in need of help a few years prior, and I was there for them…making meals, sending cards, taking them to lunch when they felt up to it.

  • penguin50

    This is the best list of this type that I’ve ever seen. I can only hope that it did not cost Dr. Gunter too much sorrow to review these distressing conversations and sift out the best and worst elements of them. I think her suggestions could easily be adapted for discussing other sorts of heartbreaking medical situations. To guest, who objected that this advice is not necessarily suitable for acquaintances, well, of course not. One must adjust them as needed for the particular relationship in question. Dr. Gunter can’t be expected to offer an individualized script for every possible encounter or to have magic tips that are somehow ideal for everyone.

    I would add one more thing based on my own experience: In the workplace, please don’t ask people difficult personal questions in the restroom when it is clear that unknown colleagues are sitting in locked stalls and perfectly able to hear! I once had several coworkers concerned about my health who would ask questions in situations like this that were not at all private (the same goes for quizzing a coworker in a meeting room as others are drifting in to attend the meeting, or in the kitchen as colleagues are walking in to get a cup of coffee). I was willing to share details with them, but not with unknown parties who might not even realize I was seriously ill.

    • Suzi Q 38

      At work, I have decided not to share too many details of my health status at all. Everyone worries too much about me, so I have decided to tell them that I am doing so much better thank you, and healing nicely.
      They appear to respond well to my positive attitude.

  • Sue Wintz

    A friend of mine wrote an article based on a list I wrote after our 17 year old daughter was killed by a speeding red light runner. You can find part of that list in the article at http://bit.ly/19qBtLn

    Another excellent piece is from the MISS Foundation at http://bit.ly/18FM2Y8