Friday, May 27, 2011

What You Shouldn't Say

In our early NICU days, my mom and I frequently commented that if I were ever to write a book about our experience, I would include a list of things that people should not say to parents (or grandparents) of micro preemies.  I wanted to be sure to compile the list with the right intentions...for it to be a learning tool instead of a gripe session.  I hope I've done that with this post. 

LET ME BE CLEAR:  I understand that all of these things were said by people who did not mean any harm!  I did not take offense when they were said to me.  I want this list to help those well-meaning people who unintentionally cause harm with their words. 

What you should avoid:

1. When a micro preemie is born, saying one of the following: 

I can understand that it's difficult to know what to say.  Often, people just want to put a positive spin on a tough situation.  But when you see your child surviving on a ventilator, tubes coming out of every appendage, when you fear for his/her life, "Congratulations" just isn't appropriate.  Congratulations on what?  Some comments that I felt were more appropriate were, "How can I pray?" or "How can I help?" 

"He/She is so cute!", "He looks just like you!"
A baby born under 2 lbs hardly looks like a baby at all...and certainly does not resemble the parents yet.  The parent knows you're lying.  Why lie when there are other things you can say or do?

"At least you didn't get stretch marks."
I can guarantee that any parent of a micro would GLADLY take all of the stretch marks in the world if they could only have a healthy child.  I find myself, even now, wishing for those happy reminders of a full-term pregnancy.

"At least you didn't have a painful delivery."
I can only imagine what a normal delivery feels like since I've never carried a child to term.  In my case, I delivered Samuel breech (and booty first), without any pain medication, and had the doctor's entire hand inside to prevent major head and body trauma to Samuel.  All of that compounded with the fact that I realized I was about to deliver one VERY sick little baby into the world, makes for something less than 'easy.'  And yet again, any parent would trade an easier delivery for a very difficult one if they could only have a healthy child.

2. Saying, "I know what you're going through. I had a preemie myself."

This is probably the most common mistake that people make when talking to a parent of a micro.  If the person saying this had a baby at 34 weeks or later, the ability to relate is VERY minimal.  Here is the statistical breakdown (taken from the March of Dimes website:)

Odds of a Premature Baby's Survival by Length of Pregnancy
Duration of Pregnancy:                  Likelihood of Survival:
23 weeks                                      17%
24 weeks                                      39%
25 weeks                                      50%
26 weeks                                      80%
27 weeks                                      90%
28-31 weeks                                 90-95%
32-33 weeks                                 95%
        34+ weeks is almost as likely as a full-term baby

And that's just likelihood of survival...I could go into the statistical information for medical issues/months spent in hospital/disabilities/impairments....but I think you get the idea of what it would look like.

I remember meeting a woman who was very interested in Samuel's story because she had a baby at 34 weeks.  She told me that she understood what I was going through because she had spent 2 weeks in the NICU with her baby.  She said it was the hardest thing she had done in her life - being away from her husband and only seeing him on the weekends while she stayed with the baby in the hospital.  Although I have no doubt that it was a difficult situation for her, I knew she did not understand what we were facing.  24 weekers face a vast number of complications compared to a 34 weeker.  I find that it's easiest to relate to someone who has had a baby earlier than 27 weeks.

3.  Saying, "I know of a baby who was born under 2 lbs and he is doing great!  Why does your child have so many issues?"
Recently I someone told me that they knew of a baby who was born about the same size as Samuel.  They wondered why Samuel had 'so many issues' compared to the child they were talking about.  I asked what gestation the child was born at and they said 28 weeks.  No matter the size, there IS a difference between a 24 weeker and a small 28 weeker (see the chart above for one example.)  Those few weeks make a big difference in development...especially with the lungs.

4.  Sharing information and statistics.
I can PROMISE you that the medical staff has made the parents more than aware of what the possible outcomes are for the child.  The best thing you can do is to encourage and support the family.  Give them hope!  I feel like I went months and months without anyone (other than family) telling me that they thought Samuel would be ok - physically and mentally.  One day, a very sweet man from my school's maintanance department said, "Sarah, he's going to be perfect.  You'll see."  I'll never forget that conversation because I felt like it was the first time someone actually BELIEVED whole-heartedly that Samuel was going to be ok.

5.  Discouraging a parent of a micro preemie from praying for the BEST for their child...even if it seems unlikely.  (ie. "You will love it no matter what is wrong with it.")
If you've read this blog from it's beginning, you'll know that we've always prayed for a "healthy, normal, beautiful baby."  After a post where I asked everyone to pray that prayer with me, I received a message from someone who suggested that I not bother to pray for that because, "You will love the baby no matter what is wrong with it."  I was really upset.  I felt like they were saying, "Your God isn't big enough to work a miracle in Samuel's life.  You should accept that he will have disabilities."  When you say that you will pray for one of these babies...pray for a miracle.  If God created the universe, I'm pretty sure He can work a miracle in the life of a little baby.  Wouldn't you agree?

6.  Saying, "I know of a little girl who was born around the same gestation as your little boy...and she is doing really well." (This isn't really a what-not-to-say, but it's something to think about before you tell a story.)
There is a distict difference in how micro preemie boys do compared to how micro preemie girls do.  Especially caucasian boys (ie. 'wimpy white boys' as they are affectionately referred to by the NICU staff.)  I was always glad to hear a story of another 23, 24, or 25 weeker who was doing well....but the stories about the little boys always had a greater impact because girls generally do so much better.

7.  Saying, "So what's going to be wrong with him/her?"
No one knows the outcome of these little guys until they are further along down the road.  Sometimes the ones that they think are going to do well, don't.  Sometimes it's the opposite.  Regardless of how these little babies turn out, it is very insensitive to ask this question (and believe me, it's asked A LOT!)  I want people to believe the best for Samuel, and not assume that there is going to be something wrong with him.  I know that others in our situation would feel the same way.

I certainly don't say any of these things to 'get back' at the people who said them.  In fact, I probably would have said some of these myself a few years ago.  I just hope that this list will aid you in future conversations with parents who have had a child early.


  1. Oh Goodness. I definitely needed this laugh. I can relate to every single one of these phrases. We just had our baby girl 16 weeks early, and everytime someone said, "Congratulations" I would smile and say thanks but I secretly wanted to pop them across the head and say "for what?" The other insane comments just keep coming and coming. I wish I had the gall to forward this page to all my family members, but they'd probably be offended. Maybe they'll stumble upon it somehow. lol

    I wish you and your family many, many blessings in the years to come!!

  2. Love this Sarah! So, so true. Something that has driven me crazy has been when people say things like, "Well, whatever happens you know God is in control." While we believe in that statement, it's not something you need to be reminded of, especially since every time you turn around, someone on the staff is telling you all of the life-threatening obstacles your child faces. It's as if the person is expecting your child to not do well, and they feel the need to remind you (as if you've forgotten how fragile your child's life really is).

    Thanks for sharing this!

  3. I'd like to see more pics of your beuatiful boy. Please, update us soon.

  4. I love this. It's so true. I always want to tell those 2 week NICU people who think they can relate, "I'm sure that was hard for you but you have no idea what it's like to stay for months; you can not relate!" or those who say they know someone who had a baby really early too and it turns out to be a 34 weeker. I want to roll my eyes and say Whatever! I would have to add the statement, "they need to be exposed to germs to build immunity" you hear when you finally bring them home. I wanted to say, "I'm sure that worked great for your full-term baby. I'm going to work on keeping my baby alive; I'll work on immunity later.". Last, I think we should be allowed to hope for the best for our children like every other parent. Just because we had our children early doesn't make us hope any less for our children. Sorry about the long comment.

  5. I hope this doesn't fall into the category of "things to not say," but I had a mom in my office (I now work for WIC) who had a preemie baby boy(I think born arond 25-ish weeks) who was still on oxygen. As an effort to give her some hope, I explained to her about Samuel and that, though, it did take some time, he was able to successfully get off the oxygen. After reading through the list, I think I avoided any of the potentially harmful comments! :) I do, however, think it did give her some hope. You could see it in her face.

  6. Everyone is different and I am I must say fortunate to had a female 29 weeker who weighed a mere 810gms but is doing great just as you said those few weeks make a huge difference to everything we as preemie parents go through my thing is that having a bby under a kilo i hear a certain phrase on a daily basis that just shouldn't be said "At least your going to have her as a baby for longer and she won't get big too fast which is too cute" NO it's not cute it's damn right frustrating when as a parent you watch your child struggle to grow and do things their size just won't allow... It's quite sad when your baby had rsv and every gram they lose breaks your heart a little more or in another light when you count every gram as a celebration... People of full termers will never quite fathom that your child being so small is not such a CUTE thing....

  7. My daughter was born at 26.2 weeks (78 days in the NICU) and I can relate to every single one of those comments. It drives me nuts when people say that they have a "preemie" who is a 34 or 35 weeker who spent a few days or weeks in the NICU. They go on how traumatic is was etc...but they didn't LIVE the NICU like micro parents do for months at a time. So glad I found your blog!

  8. I would like to add the question "Is he going to be ok?" after hearing that your child was born at 2 lb. (We were fortunate to make it to 28 weeks.) Of course we pray that our babies will be "ok" but that is not a question that we can answer. It's a question we pray ourselves every day that the answer will be yes!