5 Things NOT to Say to a Family in the NICU.
I am going to make this real short, sweet, and to the point. I think we can all agree that the NICU is one of the most overwhelming, stressful, and difficult places one can be. It is usually dark and cold. There are alarms blaring nonstop from different pods/ bays/ rooms, etc. Even with the alarms consistently going off, it is uncomfortably quiet.
In the NICU, I was told each one of these things I will list below. Given my mental state at the time, and the circumstances, I am sure you can imagine EXACTLY how I was feeling. So to make sure you or someone you know doesn’t accidentally cause more harm than good (even with the best intentions), here are 5 things you do NOT say to a family in the NICU.
- “When will your baby be home?”
Why you should avoid it? The short answer is simply that NICU parents usually have no idea when their child is coming home. As a general rule of thumb, it is safe to assume the child will be home around the original due date, if not later. The NICU is complex and there are many boxes that must be checked before the baby can be discharged and sometimes it isn’t easy as learning to change a diaper.
2. “Well at least…”
I am going to stop you right there. Don’t finish that sentence. If you value your relationship with that person or family, do not finish that thought. In the NICU, all of us parents KNOW that it could’ve always been much worse but it could’ve been much better too. We planned to go home together as a family in a few days. Instead, we have to go against our instincts, our better judgment, and leave without our child. It isn’t what we planned for and it’s a situation we are very unfamiliar with. We know what you’re going to say and we want to slap you- either physically or with an insult.
3. “He/She is so tiny!”
Why you should avoid it? Babies in the NICU don’t always look the same as full-term newborns. Sometimes birth size is due to conditions such as IUGR and Prematurity or even medications. The size of a baby has often been associated with fragility. In the NICU, there are babies who are less than 2 pounds- some even under 1 pound. Weight plays a part in the overall care plan, including kangaroo care, or the ability to hold the baby to your chest. Being reminded of just how small our child is, serves as a reminder that we have a VERY long road ahead of us.
4. “Everything happens for a reason.”
Why you should avoid it? I think this one is self-explanatory. I feel as if this could possibly go side by side with the 2nd thing you should not say, but this one has many reasons why it’s earned its own place on this list. Whether you are religious, spiritual, or believe in Karma, one thing is for certain, this did NOT happen because of some higher power. It is science and we have the science pieces drilled into our heads by our doctors about what went “wrong” and why. Most of it is not something a mother who had a full-term, healthy pregnancy would understand. That isn’t to belittle someone’s understanding or inability to understand a situation. That is one of those “count your blessings” that you don’t understand all that we’ve had explained to us.
5. “What is wrong with him/her?”
Why you should avoid it? Well, how would you feel if someone asked what was wrong with you? How would you feel if they asked “What is wrong with your child?” I think it is safe to say, you’d be offended, angry, and probably ready to respond with a snide remark. Most of the time in the NICU, your child is given a number of diagnoses all at once. Then it becomes a matter of which condition or factor to address first. Sometimes one condition is a side effect of another, or because of a medication reaction, or because of an infection. Ultimately, there is nothing “wrong” with any child in the NICU. Things may not be the best in terms of health, but nothing is “wrong” and saying something is “wrong” will likely cost you your relationship with this person or family.
Maybe this article is a little more aggressive. Perhaps there is a good amount of anger behind these words. I want to make it very clear to anyone who reads this that the NICU is a frightening place at first. It takes quite a while to adjust to it. It is what I would like to call Limbo. It is a place of uncertainty. You are a mother and a patient. You are emotionally torn to pieces and mentally destroyed while you are forcing your body to physically stay awake.
If you know someone who is in the NICU, my advice is to simply listen and wait. They will vent when they are ready. They will process their experience when they are ready. Be there for them. Be patient and listen. This is a traumatic experience for most people so avoid using words or phrases that imply guilt or blame. Show compassion and understanding. Be a friend, because I promise you, they will need it.
As a mom of a full term nicu baby I find it a little offense that you would say we wouldn’t understand. No matter the reason your baby is taken to the nicu you will understand how others feel. To think only Premie baby’s go to the nicu is rather naïve. I don’t feel a mom of a premie will understand what we went though as nicu parents like I wouldn’t understand exactly what they went though.
As far as asking what’s wrong I see no issue with that. It’s better to educate then to stay silent.
I do apologize if this came off as offensive to you. The statement you are mentioning is regarding a child’s size when mentioning “everything happens for a reason.” A full-term, HEALTHY baby does not spend much time in the NICU. If they do, it is simply for observation and nothing has gone “wrong” as I have been reminded by every Neonatologist I have spoken with. Nowhere in this post did it mention that only Preemies are sent to the NICU. In fact, the key theme of this entire blog is that it does not matter how long your child is in the NICU, it is a terrifying place, your little one is resilient, and you are strong. Each parent has a journey with their child in the NICU and it is that experience that shapes our viewpoint.
As for saying “what’s wrong with him/her”, I wholeheartedly agree, education is priceless. However, as with all things it isn’t always WHAT you say, but HOW you say it.
I value your opinion and will be sure to address this in future posts. Let’s be grateful that we each have our own stories and experiences which are unique to us.