Preterm birth is one of those things that is surprisingly common (the March of Dimes estimates that 9.6 percent of babies born in the United States are born before 37 weeks, which is the cut-off used to define prematurity), and yet impossible for most people to truly, vividly understand unless they've gone through it themselves. And that means the parents of preterm babies -- who are already dealing with so much stress -- often end up feeling very alone.
"Parents who have not had direct experience with a traumatic birth or a newborn’s hospital stay can struggle with knowing how to act, what to say and what to do," said Amy Carr, public awareness director for the non-profit A Hand To Hold, which provides support to parents of premature babies. With that in mind, here are five things not to tell parents of premature babies -- and what to say instead.
What NOT to say:
1. "She's so teeny!"
"It can be jarring to see a very tiny baby hooked up to medical equipment for the first time," said Carr, whose own daughter had a stay in the NICU. "[But] consider, carefully, what you say. Skip references to a baby's size, as babies born early won't look the same as newborns." Instead, comment on any family resemblances you notice, Carr suggested, or simply tell parents their babies are beautiful. Because they are.
2. "At least" anything
Nothing about having a medically fragile child in the hospital is easy. Mothers who gave birth early weren't spared the discomfort of the last trimester, or the pain of birthing a large child -- and parents are not lucky that "at least" while their child is in the hospital, they can sleep.
"Comments suggesting there is a silver lining to a NICU stay or delivering early can be insulting," cautioned Carr.
"Most mothers will never sleep while their baby is in the NICU because they are pumping every two hours and nervous about whether or not their baby will survive," echoed Jennifer Degl, author of "From Hope to Joy: A Memoir of a Mother's Determination and Her Micro Preemie's Struggle to Beat the Odds."
Another bad "at least?" "At least your baby is alive," Degl said. "I have heard this, and it is terrible. Yes, many premature babies don’t survive, but that is not something that will make a preemie parent feel better. If anything, it adds to the guilt they are already feeling."
3. "Babies need to be exposed to germs."
When -- after long days, weeks or months -- preterm babies are finally released from the hospital, it's usually with a careful set of guidelines for their care. Parents will likely be told to limit visits with anyone who has been sick in the last week, and to remind guests to wash their hands thoroughly. And visitors should respect that.
"I would say the biggest thing I see that's not well understood is that when a baby is born prematurely, their immune system is compromised ... so if they get sick, it can set them back far more than a term baby," said Nick Hall, founder and president of Graham's Foundation, which provides support for parents of preemies and for related research.
"[Guests] think the parents are crazy. They wonder, 'Why are they being so hyper-vigilant? Babies need to be exposed to germs!' It's interpreted as they don't trust us; they don't want us visiting," added Hall, whose twins, Graham and Reece, were born at 25 weeks. (Graham passed away after 45 days.) But moms and dads of preemies aren't being over-the-top, rude or hysterical, Hall said. They're simply being good parents -- and following the advice of medical professionals.
4. "When will"...
... "your baby come home?" or "your baby walk?" or "your baby be 'caught up?'"
When it comes to preterm babies, there are no crystal balls and there are rarely clear answers. "Many babies come home about the time of their due date, but a whole host of medical factors may be involved," Carr said. "Consider avoiding the question altogether unless [the information] is offered." Same goes for questions about any other future milestones or predictions. "NICU babies grow at their own rate, and reach their own milestones in their own time," Carr said.
5. "Thank God that's over!"
Often, preterm babies are released from the hospital and they immediately thrive. But in other cases, babies still require a lot of care, and their parents still require extra love and support. Yes, it's important to help families celebrate wins when they experience them, but don't forget to take the longview.
"For parents, it's not over when you leave the hospital," Hall said. "Oftentimes, there's still a lot that needs to be done for your baby's health and development."
What to say:
"It's tough when a baby comes early or has complications. There's usually not a card for that at the Hallmark store, and parents may be dealing with grief that they did not have the birth experience they expected," said Carr. But without diminishing what they're going through, friends and family can help parents acknowledge that they've just ushered a new, beautiful human being in to the world. Welcome them! Carr suggested maybe a small toy or stuffed animal, a card, or even a thoughtful preemie outfit for when they're big enough.
2. "Can I help with your lawn?"...
No, it doesn't have to be the lawn, but be specific.
"Bills must be paid, pets must be fed, and of course siblings must be cared for," Carr urged. Gift cards for gas are great, she said, as are things like offering to watch an older sibling, arranging for lawn care or housecleaning, organizing a meal calendar or simply showing up with snacks.
3. "I'm here whenever you want to talk."
The highs and lows of caring for any newborn are intense. Parents are nervous and exhausted; they're completely, gobsmacked-in-love one moment, then wondering what the heck just happened the next. In the NICU, that is only amplified -- enormously. "Emotions can be up and down in the same day," Carr said. "Give families space to express their feelings -- the NICU is not called an 'emotional rollercoaster' for nothing." Make it clear that there is no statute of limitations as far as you're concerned. You'll be there -- to listen -- for as long as they need.
4. "I don't know what to say."
Sometimes the best thing you can do for parents in the NICU is to acknowledge that you don't have the right words to help fix whatever challenges they might be facing, because there are no right words. Carr said that honest statement is certainly better than the common refrain, "everything happens for a reason," which people often default to when they don't know what else to say. "It doesn’t help explain why things happened the way they did," said Carr. "Instead, acknowledge the pain or sadness the family may be experiencing."
5. "You are the most important person in your baby's life."
When parents welcome a preterm baby, there is so much that is confusing about the situation, and so much activity that happens quickly and may feel beyond their control. That's why one of the kindest things friends and family can do is remind mothers and fathers that they are still the most important people in their baby's life.
"You can begin to understand your baby, even if they're so small and tiny. You can begin to understand their expressions, and there's far more that parents can do to impact the development of a premature baby than they realize," Hall said. Reassure them of that.
How? Try this simple statement, Hall suggested: "Don't ever doubt for a second that you're the most important person in your baby's life."
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