Thursday, August 28, 2008

Dealing with Insensitive Comments, part 4 (weeklong series)

As you leave the NICU with your baby, you will most likely be extremely excited and also a little nervous. You'll have a lot of cheerleaders in your corner- family, friends, NICU-buddies, medical staff. You'll worry about a lot of things but one thing you might not even consider are some of the remarks you may receive from all manner of folks now that you have your baby home. Here are a few that you may hear and some possible replies. (Please always remember, too, that especially if the comment comes from a stranger, it's sometimes best to completely ignore the individual. Don't waste energy with replies to each and every opinion you're bound to hear.)

Insensitive Comments You May Hear Upon Homecoming:

"What is WRONG with him/her?"

I shuddered typing this. Far and away, this was the most horrible thing I would hear. I think people were just shocked by all the equpiment I had to cart around along with my baby girl. Nonetheless, this is an inappropriate, hurtful thing to say and my recommendation is that you either completely ignore the ignorant fool who asked it or reply "Not a thing" and walk away. Do not dwell on this type of comment. Your beautiful child is home and that's a wonderful achievement!

"What's that thing sticking out of your baby's mouth/nose/stomach/etc.?"

Ah, the joys of this query. Most people take for granted that they will leave the hospital with "wireless babies". Not so with tiny preemies. It is not only not unusual but in fact quite likely that your baby will have some kind of tube sticking somewhere out of his or her body, be it a nasal canula, an NG-tube, a G-tube, a home vent tube, etc. If a child asked this question, I would answer very simply and politely, "Oh, that tube helps her breathe" or "That tube helps her eat." That's enough to satisfy the curiosity of a child. For grown-ups, I'd usually explain what it was, but I was perhaps not so patient and polite. It might sound more like this: "That THING is a nasal canula which provides oxygen so that she can breathe."

"Were you a heavy smoker through the pregnancy?"

This question popped up because my daughter came home on supplemental oxygen (as many very premature babies do). Not surprisingly, it came from a stranger. I'm hoping those of you reading this blog can guess what the answer to that is but, if not, oh well. I didn't answer the random woman who asked me because it was none of her business. Heavy smoking during pregnancy is more likely to lead to low birth weight and asthma conditions than it is to result in a baby being on oxygen. But it's not your job to tell people that. My advice? Walk away.

"What do you mean she's FOUR MONTHS OLD? She looks like a newborn."

People like to ask about the age of your child. This is just a fact of life. They ask me about my 2- and 3-yr olds all the time. There are two schools of thought on this one. The preemie book I read while in the NICU advised that you give your child's corrected age. So, for example, at Easter time I would have told people my daughter was one day old when, in fact, she was almost four months. Personally, this seemed too weird to me and invited a whole host of other problems if the conversation continued. So, after people reacted in shock, I would say very simply, "Yes, she's still very small, she was born very early." End of story. Either one works; it's a matter of what you're comfortable with.

"You don't need to be so rude! I've certainly been around babies before!"

This comment tends to be heard after you've requested that an individual either a) wash their hands before touching your baby, b) wear a mask around your baby, or c) simply NOT touch your baby. No matter how kindly you phrase your request, some people will be offended by these stipulations. My recommendation? Tell them your child's doctor insists that's the only way to keep your baby healthy and out of the hospital. If that's not a good enough reason, walk away.

I don't have any "new" recommendations for friends and family members today. By now, you're probably pretty comfortable with the preemie idea and you're most likely super excited that the baby gets to come home!

My advice today is for all of us and it has to do with just thinking before you speak. It is one thing to be curious about something; it is another to be rude, blunt, or accusatory. Comment only if you have something positive to add. One of the nicest things anyone said to me after I brought my baby girl home came from a woman I'd never met while I waited outside an ice cream shop. As I stood there with my toddler son and my infant daughter, the woman smiled, first at C., then at me.

"My daughter had an NG-tube too," she said, "She just got her driver's license." And with that, she smiled and left.

Now THAT was a welcome comment.

If you've missed any of the earlier segments of this series, you can find them here, here, and here. Don't miss tomorrow when I'll share some insensitive comments you may hear during life at home with your preemie. That will be the last post in this series.


Ryann said...

Ok, the story about the woman who commented that her daughter also had an NG tube and had just gotten her drivers license... it made me cry at work today. It's so wonderful when you can make a quick connection with someone like that.

Because we don't have other children and have a great family, we were able to keep Addy from going anywhere but the hospital for over a year. We rearranged schedules and never went anywhere together unless grandma could watch her. Because of this, we avoided a lot of these types of comments, but we did have to be very strict about visitors. Only a handful of people got to be around Addy the first year. They knew the routine of scrubbing up and not coming over if you had been around anyone who might be sick. Many friends and family members asked to see her, but we stuck to our original plan and it has really worked. Addy only got a slight cold last winter, but it could have been serious.

This summer we have been a little more relaxed and have actually taken her to the grocery store a few times! When winter rolls around again, I'm sure we'll get the "Why do you keep her in a 'bubble' like you do?" and "I don't understand why we can't visit or go out to dinner with you guys" comments. We are fully prepared to stay firm to keep our daughter healthy.

One trip to Riley Hospital did result in a strange situation. Addy was still on her portable oxygen tank and Nick dropped us off at the front door. There was a woman standing at the front door of a children's hospital SMOKING!!! I was so angry, but I bit my tounge. I simply walked up to her before I got Addy out of the car, said "Excuse me, I need to get my daughter out of the car here and she is on oxygen. It is very dangerous for you to be smoking around her because of the oxygen and her chronic lung disease. Would you mind moving?" She said "ok, no problem" and moved over to the next entrance. She was oblivious to the fact that NO SMOKING is allowed on any part of the grounds of the University or Hospital there.

Ignorance amazes me.

Erin said...

My daughter wasn't early (actually, a week late), but about 2 weeks after birth, she developed a very large, dark red birthmark that covers about a third of her face. We were extremely fortunate that most people have been very nice about it.

One thing I found is that the people who did ask about it usually did so out of a combination of concern and curiosity. Most adults didn't ask unless their childl wanted to know what it was and they were concerned that the child might say something inappropriate in the process of asking.

Children sometimes would ask in a way that stung a bit, but I just had to remind myself that they really didn't want to hurt me, they just were curious.

The thing that was interesting for me is that the most often-asked question from young children (5 and under) was "does it hurt?" Thankfully, the answer was no, but It was interesting to me to see that even very young children were curious about it, and were happy to know that it didn't hurt. I like to think of it that they cared about her in their own little way.

I think that the important thing is that, regardless of how questions are asked, you think in terms of how the comment was intended. I've never seen a comment (except possibly some from under-6-year-olds) that was not intended to be nice and concerned. Knowing that intent made it easier for me to weather some of the comments made.

Also, it may be worthwhile to see it as a way to help others realize that all babies are born a little different. When children have asked about my daughter's birthmark, I try to answer in a way that helps them see that it's "normal", and she was just born that way. Maybe that will help them understand others who are different too?