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prematurity

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

KangaroocareThis 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 friendOliver day 2, birth weight 1 lb 10 ounces has 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.

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Discussion

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

  1. Such an amazing post Dr. Gunter. Thank you for sharing it! And for all of the blogging that you do; your blogs never fail to inform and/or move me…this one especially.

    Posted by Babs | August 31, 2013, 7:20 pm
  2. When the the parents are ready and if they feel the need there are support groups for neonatal death. One in the Bay Area that I have been involved with is: HAND of the Peninsula. HAND stands for Helping After Neonatal Death: handsupport.org. We have had parents attend grief support meetings who have lost a baby in a multiple birth. My prayers are with this family.

    Posted by Ellen Kelly Daley | August 31, 2013, 7:36 pm
  3. Donate blood! What an amazing gift, the people I asked to donate when my 26 weeker was in the hospital were visibly relieved and honored to be able to do something that could help.

    Posted by Stacy | August 31, 2013, 8:15 pm
  4. I love the suggestions on listening and giving blood. When giving blood you can use Widen name, then have a handwritten message with the little persons name. Listen without talking.

    Posted by Rich Hartmann | September 1, 2013, 5:54 am
  5. What an excellent blog post. Thank you.

    Posted by anjie | September 1, 2013, 8:17 am
  6. A dear friend of mine lost triplets. There was so little I could do. I did help her to write a *scathing* letter to her insurance provider when they sent her a form letter, on her due date, reminding her about the importance of postnatal checkups.

    Posted by Jeni | September 1, 2013, 11:24 am
  7. Perfect. I am a Social Worker and will certainly share this with families so that they can share it with their own loved ones who will want to know how to be helpful. Thank you!

    Posted by Kristen | September 1, 2013, 7:50 pm
  8. I wish that I had this post to print and hand out to all the idiots in my life when my daughter was born and in the NICU for 6 weeks. One thing not on your list of things to say/not to say is “You must feel so rested since you are not getting up in the middle of the night.” Ugh, I wanted to slap this person!!!! Really, pumping several times through the night, while getting to bed VERY LATE and UP VERY EARLY to ensure I can provide all the milk I can for my daughter AND being in the NICU every freaking minute I possibly can leaves me rested???? Can you tell I have some anger at this one still?

    Another was something to the effect that it must be nice to have nurses taking care of her (ie, diapers and what not).

    Also, parents of children in the NICU go through 2 very big transitions: becoming a parent to a baby in a NICU, and then when the baby (or babies) come home. No one prepared me that each single event in such a short period of time would be so stressful. Although I was extremely happy to have my daughter home after 6 weeks in the NICU, having her home was a transition that was difficult as well, more than what I’d imagine having a healthy term infant would be.

    Thanks for this post.

    Posted by Jamie | September 2, 2013, 1:35 pm
  9. As Woody Allen said “Showing up is 80 percent of life” as I often find visiting friends (and strangers) in the hospital.

    Posted by Ken Krebs | September 2, 2013, 6:59 pm
  10. As a NICU nurse, I see this far more often than I would like. A Mom of triplets where one dies does not become a mother of twins. The baby’s live, no matter how short, is important to remember and acknowledge.

    Posted by Nancy | September 6, 2013, 5:32 am
  11. I wept when I read your post. 13 Years ago I had my twins at 27 weeks. They spent their first three months in the neonatal ICU. It was hell. They did well, but that didn’t alter the fear that accompanied me every day about how their prematurity would affect their development -for years. The despair and anger that my body had betrayed me and my children. The altered paths -the not “normal” developmental path they took in their early years, never on schedule for the developmental milestones that so many new mom’s love talking about. Their constant low weight (I never had fat babies or chubby toddlers).

    Those years are behind me now. My children are fine. Those years of worry are gone. I thank God for that. That said I cannot talk about those early months without getting choked up. The emotions are still too strong and probably will always be.

    Posted by Mikayo Langhofer, PhD | January 15, 2014, 4:40 am
  12. Great post! Lots of great advice. As a NICU nurse for 17 years, I have seen just how hard it is for families to cope, and it certainly doesn’t help when loved ones say or do hurtful things.
    As to your suggestion to “buy a gift” I can’t agree more. It’s a part of our cultural rite-of-passage to shower new families with gifts to celebrate the new baby. But when the NICU happens, because nobody knows if they should get something or what to get, the family feels even MORE isolated and depressed, because the unspoken message is one of fear, doubt, uncertainty, and worry. By avoiding the gift giving, loved ones inadvertently send a message that they don’t think the baby will make it, or the baby is so sick or unusual that they can’t possibly know what to give as a gift.
    I have rarely found a family that did not GREATLY appreciate gifts, because they are given with the intention to bring some joy, and the parents desperately need that. I am SO dedicated to helping friends and families know just what to get that I started a specialty store devoted specifically to NICU babies and their families. It’s called EVERYtinyTHING, and it is filled with items that are perfect during the NICU journey – items for mom, items for any NICU parent, items for baby. Any of them would be appropriate and most welcome during the NICU.
    Thanks for contributing to making the NICU journey better by sharing all this wonderful advice!

    Posted by EVERYtinyTHING (@everytiny_thing) | June 8, 2014, 2:21 pm

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  1. Pingback: I Won't Ask You Why You're Separated Or Your Baby Died | mohanalakshmi.com - September 16, 2013

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