Earlier this month, I came across an article imploring people to think before they speak when talking to preemie parents. The author was mortified that someone close to her had called her two-month premature son a “monkey baby.” As such, a community of preemie parents had banded together to create a list of the Top Ten Things Not to Say to Parents of Preemies.
Nobody ever compared the muppets to animal or extraterrestrial beings. Although, when I look back on photos of those first few days spent tanning under the ultraviolet jaundice lights, I can definitely see the ET alliance. The muppets most certainly did look like little old men – complete with wrinkly saggy butts. (Think Waldorf and Statler.) They hadn’t completely shed all their lanugo and were swaddled with wires rather than receiving blankets.
They were beautiful. They were perfect – tiny little people in for the fight of their life. And kicking ass. What could ever be unattractive about that?
Before I launch into my own thoughts, I want to point out that many of these comments were experienced in the NICU. Our family made the decision not to allow anyone into the unit until homecoming, so our only interactions were with nurses, doctors and other preemie parents. The article focuses on initial reactions from people visiting parents and newborns in the NICU.
Additionally, before even saying “Hello. How are you?” to a newly minted preemie parent, please know that they are experiencing a tremendous emotional roller coaster – so there’s an equal chance you’ll be greeted with a smile and a hug as watching your friend collapse in a heap of guilt-ridden sobs. The article does note this, as well mentions the potential for PTSD.
WHAT NOT TO SAY
1. “You’re so lucky that you didn’t have to go through the end of pregnancy!”
Intention matters. I spent six weeks bedridden as an in-patient. I admit to going a bit stir-crazy – to the point that Jon had to apologize to several Mother/Baby Unit nurses. Perhaps they were concerned that I might snap?
2. “At least, with the baby in the NICU (Neonatal Intensive Care Unit), you can get rest at night!”
I actually did hear this one. It was by both NICU nurses and doctors. But it didn’t offend me – they were not telling me that I could cavort about, partying it up at night clubs and sleep all night. They were saying that in order to survive, you have to find the lights in your tunnel. Caring for one preemie is a challenge – not to mention two of them. So they recommended I take advantage of the schedule to fully recover from the atrophy of bedrest and c-section surgery so that I would be at my best for my boys.
3. “He’s so small!”
When we brought the muppets home, they weighed six and a half pounds. “They’re so small!” everyone cooed. Well, yeah. They were newborns. Newborns are small. At birth, Jon and I were the ones exclaiming this. At two pounds, they were most definitely not “so small” in terms of preemies. (This was a world where we proclaimed a seven-pound term baby as “jumbo.” I probably offended her mother.)
4. “When will she catch up?”
Although the preemie world becomes old-hat really quick, most people are thankfully blissfully unaware of what’s going on. Preemies are measured according to their adjusted age. Asking how long it takes before they “catch up” is a fair question. Instead of being offended, this is a perfect opportunity to educate and inform. (The typical timeline is adjust to expected due date until age 3.)
5. “What did you do, that he was born so early?”
There are some really stupid people in this world who may actually ask this. (I was told I hadn’t given my children the best chance in life because I “succumbed to a c-section.”) But for the rest, this is most likely an awkward attempt to ask what happened. If I know you, I’m happy to explain. “What happened?” is a lot more socially acceptable than, “So, so tell me about your amniotic sac and wimpy cervix muscles. Were they compounded by hypertension?”
Most preemie parents are well aware that there is nothing anyone did wrong. But if you ask this question shortly after a tiny arrival, there is a fair chance you’ll encounter a parent in a state of self-blame, torturing themselves with “What ifs.”
6. “Everything happens for a reason.”
And what doesn’t kill you makes you stronger. I would have been upset had a random stranger informed me that free will was merely a myth and some higher power had decided my children should suffer so much at the start. But if someone I cared about said this, again – consider intent. Being a preemie parent creates a totally new realm of perspective. Before I joined the ranks of prematurity, I never stopped to truly appreciate the simple art of automatic breathing. In our struggle for growth, perhaps prematurity made me a better parent.
7. “Now that you have her home and off all that medical equipment, everything will be fine.”
We were blessed to take our boys home within days of each other, and neither of them needed to be accompanied by any medical equipment. Our nurses told us this numerous times. There was absolutely no reason to take offense. Our nurses taught us well; they believed in our ability to read the signs in our children and they believed in our boys’ ability to thrive. We had made it to the hallowed milestone of NICU graduation.
8. “You’re just being paranoid about his health.”
I’m a paranoid hypchondriacle germaphobe in my everyday life. Nobody questioned the force-field of antibacterial wipes surrounding my family while I wielded bottles of Purel like weapons and hissed “Please don’t touch the baby” (hey – I said please…) at infatuated strangers.
9. “She needs to be exposed to germs to build up immunity.”
Again, our nurses were the only ones to share any form of this. It was their way of letting us know, that our boys were healthy enough to leave the sterile environment of the NICU. Eventually, they would encounter germs – all we needed to do was pay attention. For the rest, re-read question 8.
10. “He’s how old? My child is the same age and twice his size.”
My kids have a thing for food, and they had nurses who are top of their class when it comes to fattening up preemies. So I need to recuse myself from this question. For strangers that asked randomly during an excursion: sometimes I gave their actual age and continued on my way, sometimes I gave their adjusted age. It depended on my mood.
So what was the comment that really affected me?
I don’t claim to have any logic around this, nor did I have any ill will toward those who proffered the well wishes. I was clouded in confusion. Why were these people happy? How was I supposed to respond?
“How are they doing?”
“They’re doing really well, actually.”
“Congrats! I can’t wait to meet them.”
Such a simple exchange, but one that constantly caused me to overthink my emotions.
Don’t ever think that you shouldn’t congratulate a preemie parent on the birth of their miracle (and they all are miracles), but don’t be surprised if it’s not gleefully accepted. We’re not exactly in the greatest state of mind. Is offense to the above questions over-sensitive? Absolutely. And that’s the point.
So what should you say to preemie parent?
“I’m thinking of your little ones.” Because at that point – they are the sole focus of the world.
3 Responses to When Talking to Parents of Tiny People
What a great post! I wish this was given to friends of the parents who had Preemies. We have two preemie sons – 1 born 30 wks, 1 lb 3 oz, 11 inches – 3mos in NICU and 1 born 3 lbs 15 oz, 15 inches, 2 weeks in NICU. Both were difficult experiences. I too have been asked all of those questions above. Some made me cry. I would have loved to been asked, “How are you doing?”, “What can we do to help” or simply, “Do you have any pictures to share”- because what Mom doesn’t love to share a photo of their child 🙂 We are blessed. Our sons are healthy.
A beautiful, thoughtful and helpful Blog to all Preemie parents — and, to us, too,your faithful readers — Always congratulations on a wonderful article. G.G.
I feel like Janet – it makes me wonder what I said – probably something stupid, so forgive me please!