What NOT to Say to a Preemie Parent...

Every now and then I read something that tugs at my heart strings. I belong to message board for Preemie Parents and they had this thread going about what not to say to a parent of a premature baby. It is gut wrenching to say the least to hear the anguish in the hearts and minds of these Moms who are being victimized a second time.

The thing that is stunning is that the biggest culprits are family and friends. Come on guys, we could stand to be a little more sensitive...even if we don't understand. In this situation the advice given to Thumper by his mother in the movie Bambi - "If you can't say something nice...don't say nothin' at all!"

After you read these you will understand what I mean. Feel free to add your own if you have a new one!

• You're lucky, you get to have your baby small for so much longer - I HATE THIS
• Oh, I knew someone that had a preemie, it was only 5 (or 4) pounds and had to stay at the hospital for a week.
• Aren't you glad you're not pregnant anymore?
• That has to be nice, not having to get up during the night to take care of the baby
• Aren't you glad that you didn't have to deal with the back pain of having a 9 lb baby?
• All babies spit up. [This is often said when I mention that my son has reflux. Full-term parents are clueless. Reflux is not synonymous with a little spit up.]
• All babies have sleep issues. All parents get exhausted
• All parents worry about their kids' development. Mental retardation and learning disabilities can happen to full-term kids too.
• You don't know lucky you've had it here. There are some kids that are worse off than your son, so you should be happy
• I don't know why you add fortifier to your breast milk. Breast milk is the best. It is what Mother Nature intended.
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• I know how you feel. But you shouldn't worry so much. My (sister, friend, neighbor, colleague, etc) had a preemie, and everything worked out just fine. Their kid is normal
• You need to get over it for the sake of your son
• So when do you think you'll have another?
• All babies are expensive! (referring to the cost of meds, hospital stays, preemie formula, fortifier, etc)
• The second baby will be easier.
• My coworker/friend/neighbor/whoever had a preemie and she has *fill in with some medical condition*. Does your baby have that to?
• Will she ever be 'normal'?
• All babies get sick in the winter (regarding RSV "lockdown")
• I expected her to be smaller or she looks fine to me (Someone literally said that to me while my 2 lb baby lay on a bed on an oscillator.)
• What’s wrong with her/ you that made her so premature (hello, first of all, that puts you in a situation where you have to place the "blame" on yourself or your baby. The phrasing just gets on my nerves)
• You are lucky you did not go the full nine months because you do not have a lot of weight to lose." I would give anything to have been able to go 9 months in my pregnancy. I made it 28 weeks.
• You are lucky you did not get x (fill in with whatever pregnancy complication, like stretch marks, hypertension, etc.)" Again, I would have given my life to have any complication!
• Your daughter is hitting her milestones, she will grow up normally. Ugh, thanks, but my husband and I still have to worry about other milestones like walking, talking, school, etc.
• You are lucky you got 6 months off from work. I hate this comment! Yeah, lucky that I had to spend 6 weeks of it in an NICU, lucky that I was caring for a special needs infant who was hooked up to monitors and oxygen, lucky that we had numerous doctors appointment for weeks after her discharge. Yeah - lucky!
• She looks so great, can I touch her? Um, NO!!!! Just because she is 17 pounds does not mean you can put your grubby paws on her. She still needs every precaution taken for her safety.
• I'm glad to hear they (him or her) are doing so well, we didn't think they would make it.
• Someone at a baby shower for another person joked when asking why my son was born small. "What kind of drugs were you taking while pregnant?" ha ha ha Yeah that one left me rolling in the aisles... not.
• So your kid must have Down Sydrome then, huh?
• When I announced my pregnancy, my mother in law said"OH NO!"...repeatedly...good story to tell my daughter later in life! Or when she was first born, she told me to make sure that I spent every second I could with her so I wouldn't regret it when she passed away, which is why she refused to visit her for the first 3 months of her life...she didn't want to get attatched!
• She is so small, are you sure she is growing? Or, how she insists on buying toys for babies aged 6 months, and is hurt when Lily would rather talk on her play cell phone, or play house with her dolls.
• Your delivery must have been so much easier with such a small baby."
- Wrong!
• She'll catch up- She'll get there- Don't worry
• Don't make assumptions as to why a baby has oxygen, feeding tube, braces, helmet or any other accessory. Just ask. No, my 12 lb. 6 month old baby did NOT break her leg *gasp* She had a positional club foot that needs serial casting. No, my 10 month old is NOT retarded, does not have seizures, and I'm not just being overprotective because she has to wear a helmet (DOCband) Most of us are willing and eager to share some details about our little miracles. Just ask.
• Your baby is how old? My baby is x months old and is so much bigger.
- Yeah well, I guess his being born 16 weeks early, spending 111 days in the hospital and 7 weeks on a ventilator probably had sometime to do with that.
• Don't compare a preemie to others you've known. A baby that came 4 weeks early is NOT the same. Even comparing other babies that were 30 weekers for example . . . our daughter has had many more issues than your average 30 weeker. I know of a few 26-28 weekers that have done better (less issues) and have surpassed her developmentally for whatever reason. Everyone is dealt a different 'hand' of things to deal with.
• Oh, that is why is he is small for his age". ((Ironically, these same people would say he was tall if I ADJUSTED his age!).
• Don’t say a fit lean baby is "small" (Not all healthy babies are chubby).
• My child was a preemie. (Preemie moms WILL ask at what gestational age a preemie was born and one week early is NOT preemie and INSULTING to what our preemies have gone through! (37 weeks gestation and over are FULL TERM).
• I knew a preemie or my cousin so and so was a preemie. (Don’t say it if you don’t know how premature they were. Very preemie and now a healthy adult or grandparent is COMFORTING to us moms and dads BUT just assuming they were premature or not knowing is NOT.
• My sister, etc. has a preemie", he/she has develop. delays, asmtha, etc." (We don’t need to hear this).
• He/she should be walking, talking, crawling, etc. by now" (If you can’t adjust the age don’t say anything. Plus most get it wrong and their kids didn’t do that then anyway... We don’t need to second guess or babies because someone gave us unrealistic info or expectations).
• How about when your nurse introduces herself as your child's mom for the day? My son is a 26 weeker. He weighed just over a pound when he was born, so I didn’t get to hold him for a long time. My husband and I went one morning to visit him when he was about 3 weeks old and if the fact that every time I left the hospital I had to leave my baby wasn’t bad enough , I still wasn't feeling like he was really mine. Anyway- hisnurse that day said “Hi, my name is Cindy and I'm your baby's mom for the day."
• I also hate when people don't say anything at all. I don't take Aedan out very often, but when I do inevitably someone will ask me how old he is or ask if he's crawling yet. Then when I tell them his age, or that he is just learning to sit up, they regret asking. He is 10 months old today, 7 months adjusted on Nov. 2. Usually they just stand there dumbfounded for a moment and then say, “Oh I'm sorry" or they act like I'm speaking a foreign language. Or they just shrink back like I told them he had some skin eating disease. I really hate the blank stare or when they act like they should apologize because my son is slightly different than other babies his age.
• A friend of mine lost her daughter who was born at 24 weeks and weighed 13 oz, at 4 months old. You know she actually had people trying to get into the funeral home so they could take pictures of the baby. They were even telling her things like you baby was supposed to die, or they can't believe she lasted so long. They treated the baby like a circus side show.
• Here's what I've noticed. Prematurity is not a cause announced or covered like breast cancer or AIDS, so most people you run into have never seen a preemie baby. They don't know how to react so they say stupid things. They don't realize that our babies look like babies and act like them. They act like our babies are born with two heads or three arms; when they are just our tiny miracles who have given us the opportunity to change the perception of what people think a preemie is.
• I have to say I love this topic! I've heard about 90% of these, my favorites being my mom saying we got "2 months for free" with my baby boy who was a 31 weeker and not long after I had him, my coworkers saying "You look awesome, but then again, you didn't go full term so you didn't gain that much" Thanks guys!
• While I was in the delivery room waiting to have my baby, I alllllllmost kicked my mom and my mother-in-law out because they kept talking about all the things I was missing by not going full term and they were JEALOUS because they thought I should have worse contractions or waited longer for my epidural. Then when they wheeled me off for my emergency c-section, my mother-in-law said she didn't think it was fair I didn't get to experience the full on effects of labor. I actually ended up screaming that I would've given my right arm to have the full effects of labor and not 4 1/2 weeks in the NICU constantly worrying about my baby. Ya gotta love people!
• You can't shelter him forever. My son is 12 weeks actual, 2 weeks adjusted and it is the end of October. 5 weeks in the NICU, $100,000 in medical bills, $1,000 per Synagis shot per month, post-pardum depression & guilt... Yeah, your right, let me take him to the mall and risk his health and hospitalization for your satisfaction...Grammie! Why are relatives almost the worst at being a healthy support unit for us? This comment was made by my childs Grandmother who wants me to bring him into her work. It is a very populated retail store.
• She's so little, tiny, small, etc. When looking at my 7lb daughter at 3 months (1 mo. adjusted). Too me, she is just perfect, just like any parent feels about their child no matter how big or small they are. "arent' you glad you are not nursing her?" When I would have done just about anything to have any milk come in "just let her sleep on her tummy, then she will sleep better." Yes, I really like to put my sleep needs before my daughter's life. Especially since she has more risk factors than term babies for SIDS.
• Great discussion! I recognize that it must be difficult for friends/family members/strangers who have never had experience with a preemie before to know what to say. I certainly wouldn't have known what to say before our experience!
Best thing to say: "I'm sorry, that must be hard. Is there anything I can do?" I would have loved it if more people said that to me!
• At least you got to go on Mat Leave early and enjoy more of the summer!" (My 33 weeker was born in August instead of October. Like I was enjoying any of those weeks off in the summer...)
• What do you do with your day with your baby in the hospital? (It's not like I'm sitting at home watching Oprah and eating bon-bons. I was pumping around the clock and spending most of my day at the hospital).
• At least you get some time to catch up on my sleep (believe me -- I don't miss sleep now that my daughter is actually home!)
• You shouldn't be feeding her breast milk. You should be feeding her formula so that she'll gain weight faster. (That one was from my Mother-in-law, much against the advice of our pediatrician who almost insisted that I feed our baby expressed breast milk, fortified)
• Why aren't the nurses letting you keep your baby? (that one was from my roomate in the maternity ward. I had already explained to her that my baby wasn't rooming-in with me because she was born prematurely, but she had misunderstood and thought that my baby was being taken away from me. Thanks.)
• So, she's probably hooked up to a ventilator, right? (I think it's important for other parents to understand that not all preemies are the same. I know that I'm very fotunate for my daughter to have been born at 33 weeks with very few health complications. What most people think of as "preemie" are the images they see in the media of 26 week-ers in the NICU.)
• One of the most offensive comments happened just last week. I have a friend who is due in a couple of weeks come by for some maternity clothes, bottles and odds/ends that I wanted to pass on to her. While I have spared her all my thoughts/emotions in the face of her own pregnancy, she has read all my caring bridge posts, etc. where I made it abundantly clear that no one can hold the girls etc. and what our challenges will be for the next couple years. While she was here, she was talking to one of the twins and told her she was going to wash up so she could hold her. I very quickly and politely said no and explained why (RSV, overstimulation, etc.). I didn't need her to understand (about the girls or even how hard it was to have her full term belly in my face), but to just respect that there must be a real reason for saying no to her request. She in turn went home and told her husband whatever she was feeling. He brought up the abovementioned scene to my husband who quite kindly explained again that it was nothing personal, but given what we and the girls' had been through, we had made the decision to not let anyone hold them for many reasons. What did my friend's husband say? "well, when our son is born, you guys can hold him all you want." I cried non-stop about it for two days. I felt so insulted and frustrated. They never considered how hard it must have been for us to again just see her with her full term big belly or even to let her and her germs visit us in the first place.
• I can certainly relate to people not understanding the no-holding/no visits rule. I have a blog that has updated (almost daily) the trials and tribulations of our NICU stay. I have repeated stated on the blog that per doctors orders, Henry can't have visitors (at least through RSV season, hopefully not longer). And yet, friends always want to stop by for a "quick" visit. Unfortunately, it only takes one contact with bad germs to get our preemies very sick. Sigh.
• I saw a picture of [baby] and she looks like a real baby now, so is she going to be normal?"
• He looks like a real baby now" is also one of my least favorite things to say about my son. He IS a real baby and always has been!
• You're so lucky he was so small" or "you're so lucky you missed the worst trimester"- yeah it's real fun to have your son wisked off the second he's born to be hooked up to machines and monitors. Instead of hugging and kissing him.
• But what really gets my goat is "Just bring him. So what if he gets a cold. It's not like it's going to kill him. It'll just raise his immune system" WHAT??????????? HELLO!!! I've told you a hundred times that he ha weak lungs AND a weak immune system and that if he gets a cold IT COULD KILL HIM. Do they think I'm just making this stuff up - or do they not believe the dr.s????
• Actually questioning any medical decisions we make drives me crazy. My mother-in-law was a nurse like thirty years ago, and my sister-in-law just became a CNA and thy both seem to think I should trust their judgement over his dr.s!!!!!
• My mom tells me that stuff all of the time. I hate that, it's like they think because they look like healthy babies that they aren't at risk for so many things. I don't know how many times my mom and I have argued about how cautious I am about getting my son out. Then after arguing with me about how careful I'm being, she turns around and says that she really doesn't understand what I'm going through because her pregnancies were healthy 40 week pregnancies. I'm sure us not attending Thanksgiving dinner isn't going to go over very well. But it's the choice between making sure my son doesn't get an infection that could kill him and eating turkey and stuffing. I'll pick protecting my son any day.
• I've come to believe from this experience that tact and sensitivity are skills that few possess. Very few people know how to express care, empathy, and sympathy in a sensitive way. How about this one? Oh, the next one won't be like this.
Hello? NEXT one? Can we get the FIRST one out of NEONATAL INTENSIVE CARE before I have to think about any other pregnancies? This one actually came from my mother-in-law...and I had severe preeclampsia, and am likely to have it again....
• Or this: For some reason, God chose you for this baby.... Maybe so, but would you like to then speculate as to why? Not only does this comment irk me because it presumes a lot about my spiritual beliefs, but sometimes they almost insinuate that I or my daughter deserved the NICU experience. I've developed some patience, however, when the God comments come from people who seem to know no other way to express that they care about your family.
• "If my child was that small, I would be feeding them every hour"
• Or another from my in-laws: What about Christmas and Thanksgiving? I couldn't even see to the end of the week, let alone four months into the future, and that was BEFORE we'd gone to our step-down facility.
• You aren't having any more, are you?" or "So, are you done now?" (Hhmm...none of your business. I'm thinking unless the person is my husband they don't need to know this.)
• "I'm glad it's you and not me", "Better you than me" or any variation of this. (Ya know what, I'm glad it's me too! I love my kids and wouldn't change a thing!)
• "What were you thinking?" (I think this is my favorite. Asked by someone while I was still pregnant & they just found out we were having triplets. I just said "Well, obviously I was thinking I wanted to have more three babies at a time. So the little guys just swam their hearts out and made it happen! LOL)
• "I only wanted to hold her for a second." (People, that's all it is gonna take for you to spread your germs to my baby. Sorry, but I don't think so.)
• "Why don't you have the babies with you?" and/or "I bet you are glad to be out by yourself." (Let's see..I'm out by myself because we are in RSV season, it's cold out and people wouldn't leave me or them alone if I had the girls with me. As far as being out by myself, yes I am glad to be out of the house for awhile. However, I would absolutely LOVE to have the triplets - and other children - with me right now.) People do not realize how hard it is to NOT be able to take your child with you when you go someplace. We would love to take the girls out and show them off, but to keep them healthy we can't do that. They don't understand unless they have been through it.
• When I'm out of the house, I often get variations of: "Are you sure your husband can handle the baby without you?" My husband is smart, kind, and loving. Yes, I'm quite sure that the house won't fall down without me. I'm quite sure that my husband can handle the home front for a few hours while I run errands. He's excellent with our son. Yes, he knows how to fix a bottle. Yes, he knows how to change diapers. Yes, he knows how to hold our son. The only thing he can't do is produce breast milk! We do live in the 21st century, don't we?
• I had a 32 week-er. 3 lbs 14 oz. (now 18 months). while my baby was in the NICU, I was blessed enough to hear a preemie story from my mom's co-worker. of course it started with "my sister had a preemie blah blah blah and then she got her home and gave her a bath and the baby died right after", and it ended with "but I'm sure your baby will be fine". i was SHOCKED!! well, I told my mom about the nice little story and her co-worker ended up apologizing. WHY would anyone tell a story like this to a new mom with a baby in the NICU ?! Very disturbing !!!!
• My cousin was pregnant at the same time I was, she was due a week after me. That was hard enough, but then shortly after Erin was born (this would have started when she was 27 weeks) she started telling me how she wanted her doctors to induce her and how she was going to try to force her doctor to deliver her as soon as possible. Then when she was 29 weeks she threw a fit because her doctor said he wouldn't do her c-section before 36 weeks. Yes, i think she's insane too. She also told me how lucky I was not to be uncomfortable at the end of my pregnancy. I don't know about the other pregnant women who's had pre-e, but the end of my pregnancy was absolutely miserable.
• Well, my 26-weeker is now 4.5 years old, adorable but mildly autistic, and recently my Mother was lamenting (and I SWEAR I'm not kidding): "Sometimes I wonder what these doctors are thinking, saving these preemies when they know they'll have to go through so much". I couldn't believe she said it. Was she ACTUALLY wishing my cutie pie had never made it????
•
• My other least favorite comment: "Preemies always catch up eventually." No, they don't. Not all of them. Not always.
• I have 2 favorite comments that come to mind...
The first was said by my mother in law, while my 31 weeker was still in the hospital...She used to give me grief daily because she was 'stuck' watching my 3 year old daughter(She is very busy getting her hair and nails done every week)...One day, she actually had the nerve to tell me that I was spending too much time at the hospital, and that I should not go twice a day, or even once a day. She said that I was being "unfair" and "neglecting" my 3 year old, because she needed me more than the baby and that what I was doing was going to damage her emotionally...Yeah, thanks, that was exactly the kind of support I needed after me and my baby both almost died...My 3 year old was used to me being at work anyway, so that is exactly where I told her I was going, to avoid any resentment towards the baby, but what do I know, I am only her mother...
• This next one is my personal favorite, and was actually said by my husband not too long ago--he actually says it pretty regularly..."Well, she is not a preemie anymore, you don't need to baby her..." ----Um, she is only 9 1/2 months acutal--7 corrected--and yes, she is doing awesome..However, she will always be a preemie--Although she is getting bigger, she is barely on the growth charts, and still a bit behind with her milestones...She will always be MY preemie, and my miracle baby--she fought all the odds, and I am so proud of her..I don't have a desire to hide the fact that she is a preemie like my husband thinks we should...I am proud to tell people that she is a preemie, because I am proud of how far she has come, and even though you would never know it by looking at her, I will never forget what she went through, and what we both went through...I love my husband, but quite frankly--he just doesn't get it---(Maybe because in her 35 days in the NICU, he only went to see her 3 times...)
• The other was, oh you're so lucky he was only 4 pounds when you pushed him out! Or trust me, you wouldn't want to go the whole full-term, it's way too uncomfortable. You got out just in time! It kills me. I not only want full-term, I want 41 weeks. Not 40. I would give anything to be "uncomfortable" with a healthy baby inside. And since this week will mark making an actual 9 months on my second pregnancy which is something to celebrate anyway, I will happily enjoy every back pain, constipation, heartburn, urge to pee every 5 seconds, and all the sweating from being so hot all the darn time if it means I'm gonna make it there and have a wonderful birthing experience so unlike my first. Good luck to you moms!
• This was said to me with my last preemie, getting close to almost a year ago, my nurse upon my discharge said "You will not be hard to discharge, it's not like you have a baby to take home...." I look at it like this if the hospital staff knows you have a baby in the NICU or a loss they should treat you with kid gloves.
• Just hours before delivering my daughter, my boss calls me at the hospital to ask me a work related question. My blood pressure was already through the roof and I couldn't concentrate. She said "WHAT DO YOU MEAN YOU'RE HAVING IT NOW? YOU NEED TO REALIZE THAT I STILL HAVE A BUSINESS TO RUN. CALL ME WHEN YOU'RE DONE" ....... alrighty then, did she really think I chose that situation over being at the office?
• 3 weeks after delivery, my boss decided to put an ad in the newspaper to find child care for my daughter so when she came home from NICU, she would have a daycare lined up. I told her I couldn't put her in daycare right away. She said "EVERYBODY IN THE OFFICE PUTS THEIR KIDS IN DAYCARE, YOU'RE NOT GOING TO HAVE A CHOICE" ....... well nobody else in the office has a preemie either, not to mention the OT visits and doctor visits every week, and I bet everybody else in the office got to spend at least 6 weeks with their babies at home before coming back to work too. (I quit the job by the way)
• I was doing skin to skin in the NICU one day and my daughter's O2 levels quickly dropped. A nurse ran over and grabbed her away from me and put her back in the isolette and had to give her oxygen right away. Don't get me wrong, I greatly appreciate the nurse doing that but she could've left out the comment " I GUESS ADDISON JUST DOESN'T WANT TO SEE HER MOMMY TODAY" ....... I walked away in tears because I knew that my baby girl wanted nothing more than to be held by her mommy.
• The day I was being dismissed from the hospital, the nurse was going over the paperwork with me. We could hear the baby across the hall crying and see the visitors that were hanging out in the room with mother & baby. My nurse was smiling and going on about "YOU SHOULD SEE THAT BABY OVER THERE, HE'S SO CUTE"...... Seriously, it was bad enough that I had to lay in that room for several days listening to the happy parents show off their new babies while I lay there & look at pictures of my daughter. They should have a separate recovery area for preemie moms.
• "aside from being premature, he doesn't have any other health issues."
• "you can't go to the hospital everyday."
• "I've read all about it on the internet, he's all formed properly, he just needs to grow"
• "He'll be fine. Stop worrying. I've seen it on TV."
• Or, even better: When is she coming home? As if I had a crystal ball. Perhaps more timely questions would be, "When do the doctors think she can come off the ventilator," or maybe, "Is she breathing on her own yet." When your baby is vented and still only 28 weeks GA when born at 25, the "coming home" questions are really annoying.