During our first days in the NICU with Aubrey, Adam and I heard lots of encouraging words from friends, family, and even strangers. We had no idea what we were in for, no expectations; we had no context to put this experience into. We knew, though, when something someone said rankled us, put us on the defensive, got our hackles up. After we brought Aubrey home, an article on a Facebook page about preemies that I get updates from piqued my interest; it was called "10 Things Not to Say to Parents of Preemies." Before we even read the list, I was betting we'd heard all of them in one form or another. We hadn't, thankfully--the people surrounding us seemed to be much more sensitive to our plight than the general public.
A survey was done of 630 mothers who had preemies in the NICU for varying lengths of time. The results showed that many of them lost relationships with people they loved because of hurtful things said about their too-early babies. They came up with a list of 10 most-heard hurtful things, and here they are in all their glory:
1. “You’re so lucky that you didn’t have to go through the end of pregnancy!”
2. “At least with the baby in the NICU (Neonatal Intensive Care Unit), you can get rest at night!”
3. “He’s so small!”
4. “When will she catch up?”
5. “What did you do, that he was born so early?”
6. “Everything happens for a reason.”
7. “Now that you have her home and off all that medical equipment, everything will be fine.”
8. “You’re just being paranoid about his health.”
9. “She needs to be exposed to germs to build up immunity.”
10. “He’s how old? My child is the same age and twice his size.”
Some of these absolutely flabbergast me. How could anyone utter those things to a mother whose child is fighting for his/her life? Ok. Stop and breathe, Keli. Calm down. Start at the beginning.
1. “You’re so lucky that you didn’t have to go through the end of pregnancy!”
Luckily I didn't hear this in these exact words, because I have a feeling I would have hauled off and hit the speaker. I have a friend who was put on bed rest around the 27th week of her pregnancy, not long after Aubrey was born. She mentioned on Facebook about how hard it was to be stuck sitting around all day. I gently reminder her (and I was nice about it--this was my friend!) that I would have killed to have been on my butt at home with my feet propped up if it meant that Aubrey was still safely ensconced inside my belly and not struggling to live hooked up to machines. I didn't get that chance. And I know I would have probably been miserable after a grand total of 2 days on bed rest too, but after seeing it from the scary NICU side I would have given anything to have been sent home with orders not to be up and around. I've mentioned before that I grieved the rest of my pregnancy--I still do. I missed Aubrey after she was born. Those 2 days I was in the hospital I know I still felt her kick inside me. For weeks after her birth my hands flew to my belly protectively when something startled me, and there are times when I cried because it was flat and she wasn't there. I wanted to get round and have people feel her kickboxing and ask me when I was due. You could barely tell I was even pregnant when she was born. I wanted that normal, uncomfortable last few weeks of pregnancy when the countdown was on to when she would arrive a healthy, happy newborn.
2. “At least with the baby in the NICU (Neonatal Intensive Care Unit), you can get rest at night!”
*Hysterical laughter* Right, right. Rest. Sure. I found one of those ecards that another NICU parent made that said, "Telling me to rest as much as I can while my baby's in the NICU is like telling me to eat as much as I can now so I won't be hungry next month." That about sums it up. There is no way to rest peacefully while your baby is in the hospital. You go to sleep worrying about her. You wake up in the middle of the night, several times, in a cold sweat thinking something has happened. You call the NICU at 1a.m. At 4 a.m. Again when you finally roll out of bed to go to work at 6a.m., bedraggled from the nightmares you had during the few hours you actually slept. Stress is unbelievably exhausting. Adam and I would have gladly gotten up to feed her every 2 hours if we could have just had her well and at home. Yes, we would have been tired then too, but we would have the peace of mind that she was healthy enough to be out of the hospital and we could check on her anytime we felt the need.
3. “He’s so small!”
I'm sorry, but DUH. Yes, she's small. Born way too early and all that, remember? We knew she was small and we didn't need reminding.
4. “When will she catch up?”
Rudeness. As a parent, we're already worried about that. We don't want our preemie to be behind at all developmentally, but we know there's a good chance she will be. Don't comment on how far behind she is. Tell us how great she's doing instead.
5. “What did you do, that he was born so early?”
Never, never, never, ever ever say this to a preemie mama. NEVER. Trust me when I tell you that mama is already being hard enough on herself and doesn't need anyone else adding to her self-loathing. Those that have read this blog all along know that I felt guilty (still do, sometimes) for not carrying Aubrey longer, giving her a better start. Sometimes a mother can do everything in her power to give her baby the best chance at life and it backfires on her. The doctors never gave me a reason for Aubrey's early arrival; some mothers find out--an infection, a placental tear, high blood pressure. Those of us that took care of ourselves the best we knew how are still haunted by the thought that we could have done more, done something differently, that we didn't do something we should have done. That will be with us always. Always.
6. “Everything happens for a reason.”
I have a friend whose baby died in the womb the day before she was scheduled to be born. They never found a reason as to why she died. I learned a lot from that friend in those dark days after she lost her sweet girl. People would think they were being comforting when they said that "everything happens for a reason." It's not comforting. It's cliche and trite. No one knows the reason behind why babies are allowed to die, why they are born too early and struggle for so long. For a parent watching their child work too hard to breathe, to live, there is no good reason. Sometimes things just happen. If there's a reason, only God knows.
7. “Now that you have her home and off all that medical equipment, everything will be fine.”
As scary as having Aubrey in the NICU was, bringing her home was just as terrifying. You have no back up. There is no nurse a nanosecond away if something goes wrong. When you've seen your kid turn blue on a number of occasions, it's always in the back of your mind that it could happen again, no matter that it hasn't happened in over a month. And, the majority of the time, preemies as early as Aubrey don't get to leave all the medical equipment at the hospital when they're discharged--we brought home a feeding pump and an apnea monitor. Some babies come home on oxygen and with tubes through their little sides into their stomachs. To automatically say that when they go home "everything will be fine" trivializes the situation. Yes, we want everything to be fine, but there are no guarantees. My brother said it best about bringing Aubrey home when he guessed that we were both ecstatic and petrified.
8. “You’re just being paranoid about his health.”
No one has said this to us, thank the Lord. We kept people away from her for a while, and when we did let them see her we insisted they wash first and have on clean clothes. Everyone has complied without complaint because they know it's for Aubrey's good. I guess some parents can seem over-protective about their babies, but they know them best. If they choose to keep that baby in the house from September to May because they're worried about colds and RSV and whatever else kids pass around, that's their prerogative. If they choose to take that baby to the doctor for every sneeze and off-color poop, so be it. I know that feeling of wanting to catch something small before it becomes something big, and you can't fault them for that. Our little one has been through enough in her short life--we want to keep her out of the hospital for good.
9. “She needs to be exposed to germs to build up immunity.”
I guess to some extent that's true, but this one goes along with #8. Better safe than sorry. They will get their share of germs, and too many or just the wrong one can overwhelm their fragile immune systems. I strongly believe that Aubrey getting my breast milk from the very beginning helped strengthen her immunity; she didn't get a single infection while in the NICU, and one of the doctors told us the average number of infections a baby usually got while there was 4.5. But, having said that, she didn't get all of the immunities she was supposed to get from me--that usually happens in the third trimester and we didn't make it that far. Kids are exposed to germs every second of every day. I think it's ok to take it slowly and keep them as well as possible for as long as possible.
10. “He’s how old? My child is the same age and twice his size.”
We haven't heard this one...yet. I wonder if some insensitive soul will see Aubrey at the grocery store with me and ask how old she is, and when I reply with her actual age instead of her corrected age I will be rudely smacked over the head with that response. I think all it would take would be to tell them that well, she was almost 16 weeks early, so really she's pretty awesome. It's never a short answer when people ask how old she is.
So that's what NOT to say (and my long-winded take on it). The article also gave some ideas on what TO say:
1. Congratulations! (Though this is somewhat controversial: some parents are offended at being congratulated when their babies are very ill. Others are offended because no congratulations are offered.)
2. “Tell me about your baby.”
3. “How can I help?” (Or better yet, offering specific assistance.)
4. “This experience must be very challenging.”
5. “He’s beautiful — he looks like you” (or the other parent.)
6. “I’ve brought you a meal.”
7. “I’m available to talk” — indicating what you’re really offering is to listen.
8. “Can I drive you to and from the hospital?”
9. “Tell me what’s going on with her medically.”
10. “I don’t know what to say, but I am thinking of you and your baby.”
Those are good. People really didn't know whether or not to tell us congratulations--that's a hard one. Nothing's normal when your baby goes straight to the NICU; it's a scary time instead of a happy one. Asking what's going on with the baby is always good; at least it was for me. I wanted to tell anyone who would listen how she was doing. Specific assistance is awesome--just do something. Tell mom and dad you'll go to their house and take care of the dog or vacuum or get some groceries or babysit their other kids or bring them food at such and such a time. NICU moms and dads seriously don't have it all together, especially in the early days soon after the baby is born. I would've forgotten to eat if my mom hadn't just showed up with food.
The thing we heard the most when people first laid eyes on Aubrey in the early days was "wow." Just that word. It was tough to say anything else because they'd never seen anything like her before. I think the best thing to do for the parents is give them a hug and tell them you're praying for the baby and them. Because really, what else is there to say?
-Keli
link to the full article: http://commonhealth.wbur.org/2011/06/insensitive-remarks-preemies
I would like to say that none of our close friends or even distant friends ever said anything but supportive things to us. Y'all are the best.
- Adam
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