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 friend 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?