What not to say to a preemie mom/parent?

Hello everyone:

I would like to tally up a list of: “what not to say to a preemie mother/parent “

Can you help me out?

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Maggie is a 33 weeker and was 3lbs 8oz when born. I had PIH and pre-eclampsia.

The comment that bothered me the most was from a neonatologist. I was trying to get information on how they might determine if there are problems with my baby's brain. She said, "You have a garden variety preemie. She just needs to gain weight and eat consistently." Two days later, I got a call from the next neonatologist on duty and she told me that the brain scan they did didn't show any problems. I told her my conversation with her colleague and said that all she needed to tell me was that they routinely do brain scans (I think it was a CT).

A lot of comments that have been written here, I've heard. Most of them were said with such sincere care and concern, I can forgive them or pass them off as ignorance.

"She's so little!" Well, she was. Isn't so much now, so I don't hear the comment so much.

Actually, what I found most offensive, was a billboard by March of Dimes. Something like, "Prematurity Kills" and "Do your part." I was going to all my appointments and bedrest and all that. I just felt guilty and horrible.

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Why do people always assume that the idea of putting my family through living hell all over again is of comfort to me? I'm so-o-o tired of people telling me, "Oh, the next one won't necessarily be as bad as this one."

They're right. It could be worse. Not just medically-speaking.

Now that I have one child, I have to be a responsible parent, and consider the impact of a high-risk pregnancy on my new family. Can we handle a second NICU stay financially? Can my husband care for a bedridden and/or hospitalized wife while working and being a single parent to his daughter? There's a difference between "can" and "should."

My mother-in-law persisted in this discussion about my next child LESS THAN ONE MONTH AFTER DISCHARGE from 98 days in the NICU. After my politely asking for a change of subject, she finally said, "Do you mean to tell me that this is the only grandchild I'm ever going to have?" Uh, she has a daughter. I'm not the only one with a uterus in the family. Maybe she should start working on the flesh-and-blood daughter. Or maybe volunteer to be my surrogate? I'm doing everything I can to keep the grandchild she has healthy. Her grilling about another grandchild is so selfish that, while I've already forgiven the thoughtless and selfishness, I'm not sure I'll ever forget what she said to me.

I feel strongly that the decision to have another child is an extremely personal one that should be made in the best interest of a family between partners. I would NEVER criticize those who try again, and cheer them on for their bravery. My own personal opinion, however, is that my preeclampsia was something I could never have seen coming in my first pregnancy. It hit me as a surprise, and I'd never been ill a day in my life. The second time, however, I'm choosing to put my child, myself, and my family at risk. I know it's a possibility, and I refuse to apologize to anyone for being unwilling to put another innocent baby through a NICU course, or risk leaving my family without a wife and mother.

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My sister and your bro-in-law are two of a kind. We just dealt with the same thing over Thanksgiving, as in, no, everyone cannot still come to the house for Thanksgiving. The holiday was supposed to be here because it was the week before my due date. Obviously (you would think) all those plans changed when our son was born 7 weeks early! People are seriously unbelievable. She actually called me to say they were going to come visit two days later. Somehow I guess that in her mind we were actually concerned only about the turkey bringing their germs into the house!

I am sure you know more about neonatology than anyone in your family and always will. FYI - funny enough, the nurses in our NICU here mentioned to me that a lot of their CNA's are NICU graduate mom's.

We are dealing with the same thing about RSV season and although our son is doing really well and is a feeder/grower it doesn't mean that life is grand and now we can just pretend that he isn't a preemie, just because we are finallly to his due date (last Wednesday) and now he looks like a newborn.

I wholeheartedly second the "to heck" comment and would just like to add that unless these people have walked a mile in a preemie parent's shoes, they should just keep their comments to themselves!

Good luck and Best Wishes,
Holly
North Salt Lake, UT

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My son will be 1 at 9:04 tonight! ( 9 months adjusted) He is doing great. He was born at 26 weeks 2lbs. 1 oz . We spent 114 days in the NICU and really his only major setback was NEC that was caught early on and treated with medication. Griff had a great staff working for him and we felt very comfortable........well as comfortable as we could! Still it was a tremendous strain on us mentally as well as financially. I can not believe it all happened a year ago. When I look at Griffin it seems like he has always been this chubby (20 lbs. as of his November RSV visit to the pediatrician) , happy thriving little guy. I get on this site as a way not to forget.....not to forget all of the emotions that came along with becoming a preemie mom.

I understand a lot of the insensitive things that were said and done while the 3 of us were in the NICU were out of ignorance and just plain what do you say.....what do you do???

I knew when friends and family left me they thought the worst, but most did not show it. Most people were very comforting and understood when I had a breakdown or needed alone time or needed to be surrounded with friends and family. But there were a few.....

We of course got all the usual things mentioned in post before this and most I have forgiven and came to terms with the reasons. Of course there are a few that I can not forget and sadly can not forgive.

The things that bothered me the most and still do were the people that acted like our little boy did not deserve a Christmas. Like they were not going to "waste" there money on a baby that they thought might not come home. What 3 week old really "needs" a present???? My niece mentioned to my mother in law that baby Griff needed a present and she told the 10 year old that he was in the hospital and did not need any Christmas presents! Of course she was traumatized by the thought of that and her mother had to console her and explain........ the worst part was that my mother in law repeated the story to me like I would think she was right or get a kick out of it????

Then I had a friend (that I can not speak to or even look at anymore) that came down 2 weeks after Griff was born and proceeded to go on and on about her sister in law and the fact that she was about to have a miscarriage. She talked about it all day! She talked about it in my Ronald McDonald room, at lunch and in the NICU standing next to Griffin's isolette! Then on her next visit she proceeded to tell me that one of her girlfriends that she works with told her it would probably be best that she not visit me since she was trying to get pregnant that my baby might scare her........like he was a little monster! I can understand the woman not knowing what she was talking about, but for a friend to say this to a new mother...... needless to say that was her last visit, I avoided all request and have barely spoken to her since. I feel somewhat horrible for the things I have thought about her........that she was wishing the worst for me and her sister in law. I have wanted to talk to her about it, but she got pregnant and I didn't want to upset her and now so much time has passed I don't know what to do???

Other than those few issues we really have not had to many people say or do anything too hurtful. People has seemed to understand our "rules" since we have gotten home and since RSV season started. We have made sure to keep everyone up to date with pictures galore so the only complaint we really get is about visitation and not how they have missed out on his growing.

Good luck to all.
Michelle

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I think my wife and I have heard just about every variant of the comments posted above. It still suprises me two years later that some people just don't understand.

The worst comment I have ever heard though happened to another couple who had a daughter who was born at the same time, gestational age, and weight as our son. We would see them in the family room and would compare notes, so to speak. One day the father's mother shows up and asks "Well, is it dead yet?" It had to be the absolute worst thing you could say to a mother who just had a preemie who was barely clinging to life at the time.

Thanks for this discussion. It makes me realize how many other people have had to put up with such ignorance.

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- "At least you get a break by not having to take care of him during that rough newborn period. You can rest while you know he's been taking care of by skilled nurses". I'm pumping around the clock, driving to the hospital twice a day and worried about my 3 months premature baby. Not to mention he will still be the equivalent of a newborn once he is home. Some break!

- "You will lose the pregnancy weight fast since you didn't go full term."

- "You are lucky you didn't have to give birth to a 8 lb baby."

- "Is he "okay" " How do you answer this? He was born early, he has some medical issues. Day to day he's doing pretty good. I have no idea yet whether he will be mentally delayed, etc.

- "You are lucky to even have him here, you know."

- "My baby was born 3 weeks early and had to stay in the NICU for a few days". - Umm, yeah, I'm sure that was rough, but it's not the same.

- "When will he be caught up?"

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I realize this is an ancient thread, but came across it and loved reading people's comments.

One I didn't see is one I constantly hear from my own Mom, which makes me see red. I was scheduled to have a c-section so my husband could be present for her birth during his two weeks of R&R while home from his 12 month-long deployment.

Instead of being delivered at 39.5 weeks, she arrived at 30.

A few weeks before her delivery I watched the film "The Business of Being Born," which was interesting but completely slanted and had what I found to be a rather ironic ending since the whole premise was about how wonderful and more safe at-home births are than hospital deliveries. (They did note that a c-section is the safest of all, but glossed right over that.) The filmmaker then had to get to the hospital as an emergency as her at-home delivery went awry.

Anyhow... My folks were so enamored with this film and its message that they tried to talk me out of my scheduled c-sec, and then when I delivered vaginally but 10 weeks early, they continue to comment on how "glad we are she wasn't born by c-section." The first few times I heard this (despite being in the company of others) I flew off the handle. Now it still makes my blood boil.

My Mom will carry on about how good it was for her lungs, and the bacteria she got was so critical... Even though every time I remind her that her lungs were underdeveloped because she was born so prematurely, she is so much more susceptible to RSV and every thing else under the sun, and the had antibiotics delivered into her system within minutes of being born to rid her body of any possible infection that caused her prematurity. GRRRRR!!!!

Thanks for the post, and for letting me vent!

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Oh so many things on here...my MIL told us as soon as Wade hit his due date that he's not considered a preemie anymore "cause he's supposed to be here now"...she actually tries to correct us when we tell people he is a preemie! Needless to say, I don't have a good relationship with her at all, and try and keep my distance as much as possible. We're expecting again, and this one is expected to be a preemie too, she's not even invited to the hospital this time...

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The more of these posts I read, the more I have heard...seems like a lot of our inlaws should hang out together! I too, have a relative that had a baby a week after Wade's due date and my MIL constantly compares the 2 of them, and they are not even close. My MIL thought RSV was a made up thing, just so she couldn't see the baby, and doesn't believe in hand sanitizer "cause I am clean"-excuse me, she chain smokes and drives a school bus full of high school kids! Clean, my a**! She actually started hiding the hand sanitizer when we went over to her house because she knew it was the first thing I would go for and put it right on the kitchen counter...so we started bringing our own and I got into a huge fight with her one day when I refused to let her hold Wade cause she wouldn't wash first, she got all huffy and told me I was too over-protective! This coming from someone who refused to watch our other children or help us in any way when Wade was in the NICU for almost 3 weeks cause "we wouldn't let her see him in there"-the hospital had very strict rules that only parents and siblings were allowed in the NICU, no one else...sorry!

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One thing that really bothered me, and it wasn't something someone said, but when he came home from the hospital it was like he was old news. No one offered to help us, bring food or anything. He came home at 36 weeks gestation, and except for the 1 week visit from my parents that was more a vacation than anything we recieved no help what-so-ever. It really bothered me to hear that military wife who just moved here had a csection and everyone and their sister came over to help her and brought all sorts of delicious foods. There's a about 20 or so wives in this group and not one thought, oh the baby is just now coming home maybe we should help her too!!! >=0

Not to mention no one helped out after he was born either, I had one friend come over with dinner which we were very grateful for, so no help while in hospital and no help when he came home. Pissed me off

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OMG! Perfect timing!

"..this child is spoiled rotten!"

My son now has a trach and nurses are in my home 18-hours per day. Well one of the regular nurses had death in her family and was out. So another nurse who had no experience with my son filled in for her. She left a note in the communication log regarding how spoiled he is and how he cries then stops once he is picked up. Well it was 3-pm in the afternoon, he sleeps throughout the night, and obviously enjoys being up in the day. Well this conflicted with the time she needed to attend to the personal phone calls she received throughout the day. So she had hoped laying in the crib and playing the musical mobile would suffice. Unfortunately it didn't. He loves interaction and sitting up. So I kindly replied in the communication log provided for the nurses and parents that those comments have an immediate effect on the type of interaction between family and staff. They could also form ill feelings and a complete breakdown in the working/business relationship with the company. I also added that he is a former 25-weeker who has SURVIVED, WITHSTOOD, AND PERSEVERED most of the statistical outcomes predicted for a 25-weeker ALL because of the family's INDULGENCE in his health, well-being, development, and MORE IMPORTANTLY his need for nurturing and the loving attention he desires, which aids in the aforementioned!

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I hate it when people tell me to give her time. My child is almost 18 months old and wear 3-6 month clothes.
Also, oh she has gotten bigger, how can you say she isn't growing. This is family who very rarely see her to begin with and so i say well the scales and the ruler say otherwise to whether or noy she has gotten bigger.
My daughter doesn't talk yet, people always say give her time she will just start talking and you won't be able to get her to stop. She just babbles right now
My favorite is when family comes over she eats one decent meal a day and that is normally when they come over and they say she eats well for me or something, and i am just thinking when my cousin watched she hadn't eaten since maybe 2 or so and he got her at like six and he didn't feed her until 7-8pm and then she went straight to sleep when i layed her down in bed, no bottle afterwards or anything and that was at almost 12am and she slept until maybe ten or so.
Or she is just like any other toddler when they are playing they don't get hungry they don't ask for it, well my daughter has never asked for it, and all of the other little toddlers i have seen ask for it and if you don't give it to them get mad and my daughter doesn't care half the time if you don't give it to her.
My daughter still fits in her infant seat and they always say she is advanced for her age and i am sitting there thinking how old do you think she is then they say she has got to be like six or seven months old and i sit there and say she is 17 months old.
There is a nurse that i know and she told me not to get the g-tube because she doesn't look like she is malnourished and that she just is going to be small and all babies grow at different rates. Well my daughter was 15 pounds for almost 8 months when we finally decided to put the g-tube in. I always sit there and say i never said that she was malnourished she just never gets hungry and when she eats she only eats a few bites.

Her old gastro doc made me so mad when she was in the hospital for hte g-tube. My daughter's tummy was distended and she was swollen in her face and arms and legs and what not and she told it is just the weight gain. I am sitting there thinking how is it possible that it is just the weight gain when it happened over night. Then telling me it is normal for her to reflux all day and all night, now during the day she has gotten to the point that it isn't actually throwing up she swallows it now, but at night she spits up almost all night it seems.

Or, she looks healthy nothing is wrong with her. I sit there and think she looks healthy on the outside you go on the inside and she isn't so healthy, she has breathing problems, constipation problems, and we just recently found out that she has delayed gastric emptying, and of course reflux. so how can you say she is healthy. We see a doc at least once to twice a week. There are more but i have to corral my duaghter.

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I read the above comments and i agree with them all!!! somethings to add

1. "I think she looks great!" (said by my mother in law the day after my daughter was born, yeah she looks really great all 820gm of her hooked up to every machine known to man and the dr's telling us she could die within the next 24 hours....yeah she looks great!)

2. " my brothers a doctor and we didn't have to wash our hands when we held his new baby" (ummm yeah your brother is a tool and has a 10lb baby. my baby is 4lbs and 3 months old, just wash your hands!! )

3. "if things don't work out you can always adopt...things work out for a reason" enough said with that one!!!

4. "it must be nice to not have to get up at night with your newborn" (said while my daughter was in NICU)

5. "what do you mean your not breastfeeding ...it is the best thing for your baby" yeah thanks!! i am pumping so she does get breast milk just because she is not latched on to my nipple doesn't make the milk less effective.

6. "oh i understand how you feel , my baby was in the NICU too" ummmm one night for jaundice doesn't count people!!!!

what is comes down to are people are idiots and they have no idea what preemie parents are going through unless they have gone through it themselves.

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my son passed away about 6 months ago and people always say " dont worry you can always have another one". I always correct them though because I have a son and he was my world so I make sure I correct them and let them know that he did exist and no one will ever replace him.

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Wow ancient thread but love it anyways.... I think the most insensitive people I ever came across was actually the hospital staff in the maternity ward. They required all first time moms to go to a little seminar about checking out and going home with your new baby....Yeah, that went over real well with me ... Sitting with one other preemie mom and 6 other women with their babies. Me not knowing if my son would through the night sitting in the midst of big healthy babies watching a video on what to expect when you get home with your little one... I was in shock that they would make NICU moms watch it, and then the nurse who was giving the lecture actually had the nerve to ask me 'What's wrong? Is it that you don't speak Japanese?' Yes lady my problem is a language barrier has nothing to do with the fact I'm the only one here being forced to watch this video when I may never take my child home ...
She probably had no idea about my son, but I would have expected better policy from a hospital that's supposed to have the best NICU in the country you know?

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-"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 occilator.)

MY in laws said this to me..ahhhh

right after my father in law told me i "looked great for just having twins"

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"he looks fine to me" --in repsonse to severe chronic feeding problems.

"you are over-protective, it's good for kids to get sick"

"I'm sure I could feed him"

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Ugh... People can be so thoughtless and rude. Right after I had Silas and was still dealing with the fact that my baby couldn't come home with me I had to drop some stuff off at my job. One of the girls there was due a week after I was ( and I got to watch her chain smoke thru her pregnancy) and when she saw me she came running out of her office and yelled "where is he?" I looked at her like she was crazy and said " still in the NSCU, he was 2 months early." for some reason, that really hurt. I think it was that I was super emotional.

"aren't you glad you didn't get really bad stretch marks?"
(no- I treasure every stretch mark and would have welcomed more)

"pushing out a 3 lb baby must be like taking a huge dump, but not as bad as real labor" ( I'm sorry, WTF? do
not compare my baby to your feces. And not only that,
what is REAL labor? Was what I did fake?!)

"it's a good thing he came out early, he was 3lbs 9oz at almost 32 weeks. He would have been huge if he stayed in"

"do they know why you couldn't keep him in longer?"

"so does he have any medical problems yet?"

"I just love when babies are that tiny. So small and cute"
( to which I replied, " there Is a lot of stuff that comes along with them being so small. It's not all cute." I was in the bathroom at Target and wanted to drown her in a toilet bowl.)

"when does he come home?!" or "does he really need to stay in there?!" ( no, that's where I choose for my baby to stay, I didn't want to bring him home yet. Idiot.)

" so he's normal and all right?" ( you have to be joking, would you ask a full term mom this?!)

" you DONT want anymore kids? You're only 25, the next one might be ok" ( I don't even want to think about that now. Give me a few years, I might change my mind, doubtful, but that's still a very personal choice!) or like my
MIL said - "how will I get a little girl?" ( idk, ask your two
daughters that)

grrr. I'm getting upset just thinking about all this crap. Some people are just so clueless.

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I don't think that we will ever be over it and I don't think that we should be expected to, Getting over is like saying that it never happened, that it didn't happen and that we aren't extremely, unbelievably lucky to have are children. That said today is Nate's first X-mas. My former 24 week 1 lb 5.4 oz baby is now 9 months 5 days old (5 months 5 days adjusted) and is 15 lbs.But anyway I also "love" the "he looks like a real baby" now comment.

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From my very best friend of 16 yrs who is also ( I mean WAS my children's pediatrician)- You are no fun anymore. She's just fine and her CP is no big deal. I think you are enjoying this!

Right. I love waking up every two hours with a screaming & hysterical disabled little person. I enjoy the stares and rude comments and I especially like people who tell me my kid will outgrow it one day. If the eating issues weren't enough, how about the cost of her care is making my other children's lives less than desirable? How about one small child bankrupting a family? How about the rude comments about her head shape and the "well she looks normal" remarks I hear day in and out?

This never goes away for some of us- ever. I'm wondering when I get to quit saying she's a preemie? Oooh! People!

Great thread!!!

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