What Not to Say to a NICU Mum – 9 Things to Avoid

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What not to say to a NICU mum - photo of baby holding onto Mum's finger

Having had two premature babies, each needing weeks of neonatal care, I thought I was just about qualified to write a list of what not to say to a NICU mum or dad. Hopefully this will help if you have a friend or family member who is going through this tough experience.

1. “When will you get home?”

This is a tricky one to answer. Do you mean when will I get home or do you mean when will baby get home, because the chances are I will get home much sooner than baby. In the worst cases, mum and dad might not actually be sure baby is going to come home at all.

Especially in the first few hours and days after baby is born, when the situation might be changing every 5 minutes, this question is not helpful. Doctors also don’t like to speculate further than “we aim for due date”. Even if things are going well, they never change this answer as things can change in a heartbeat.

So, no matter how many times you ask a parent, they will not be able to tell you anything other than due date and each time you ask will just remind them how far away that feels.

After 5 weeks in the neonatal unit with Harris, we had no idea he was even close to coming home until the day before and even then we thought it would be a handful of days, not just one.

Instead try saying “however long baby is in hospital, know that I am here to help. I will drop off some food so you can have something warm for dinner tonight”.

2. “Have you asked if you can stay overnight?”

Of course I’ve asked that. Do you really think I want to leave my baby behind? Neonatal units in the UK just don’t have space for every baby to have their parents with them overnight. Our local unit has three bedrooms reserved for babies who are a night or two away from going home so parents can stay and get used to looking after baby alone, knowing staff are just outside if they need support. There are significantly more than three babies in the unit at any one time.

Leaving your baby is the absolute worst feeling in the world. You never expect to be coming home having given birth without your baby so every parent will most definitely have asked if they can stay.

Instead say “I can’t imagine how you are feeling having to leave your baby. I’m here if you want to talk.”

3. “Why don’t you just sleep on a chair so you can stay all night?”

“Just”. Saying “just” makes it seem so easy and makes mums feel like they are not putting enough effort in. It’s not really a case of “just” sleeping on a chair beside your baby’s incubator or cot.

After you’ve given birth you are exhausted. Most new mums are able to lie in bed and cuddle and feed their new baby for the first few hours, even days. But NICU mums have to move between the post natal ward and neonatal ward only to sit and look at their baby from an uncomfortable chair.

Lots of mums have had a traumatic birth and are far from being well themselves. If baby was going to be in for a night or two, I’m sure most mum’s would “just” sleep on a chair if they were physically able. But when you know it’s going to be weeks or months, sleeping on a chair really isn’t an option. Baby needs a healthy mum who isn’t running on zero sleep.

Instead say “It’s awful that you are separated from baby, I can only imagine how hard that is.”

4. “At least you can have a full night sleep while baby is still in hospital!”

Um, no. Just no. Aside from the fact that it’s difficult to sleep when you are separated from your new baby who is gravely ill in hospital, most NICU mums will be waking up to an alarm every three hours to pump milk for their sick baby. Have you got any idea how much harder it is to get back to sleep when you’ve been woken by an alarm at 2am compared to being woken by a baby?

Not only have you been woken by an alarm, but you have to wake up enough to pump, then go downstairs to put the milk in the fridge and sterilise the pump kit ready for the 5am alarm call. Plus you’ve probably phoned the unit for an update on how baby is doing.

Not to mention that fact that instead of relaxing at home during the day and napping with baby, you are having to travel to the hospital to sit on that uncomfortable chair, wishing you could cuddle your baby. So no, getting more sleep is definitely not an upside to baby being in NICU.

Instead say “Wow, you are doing an amazing job. Getting up to pump must be so tough but think of all the goodness you are giving to baby”.

5. “My friend’s cousin’s dentist’s son had a baby born at 31 weeks too. He was home from hospital after 4 weeks so you probably won’t be there much longer.”

I know people say things like this to try and make you feel better but comparing your baby to another is far from productive. All babies are born with different issues and all babies develop at their own rate. When it gets to 4 weeks and your baby still isn’t close to being sent home, it only makes you feel worse. How come my baby chose the short straw and needed to stay longer than this other baby?

Instead just say “baby is beautiful, I can’t wait to meet them”.

6. “I would have loved it if my baby had been taken away and looked after that first night. It would have been great to have had a good sleep.”

Someone said this to me just the other day and it made me feel so angry. How could she not appreciate how special those first few hours and days are with a new baby? I wish so much that I’d been able to spend those precious moments with my babies and it just seems so unfair that someone can say that they wish the hadn’t had to. Plus, see above regarding the “good sleep”.

Instead, just don’t mention it. Even if that’s how you feel, a NICU mum hasn’t been able to make that choice and would probably do anything to be able to cuddle and hold their baby as much as parents of full term babies can.

7. “I’m so uncomfortable, I wish baby would just arrive now.”

I almost didn’t include this one as it’s such a common thing for pregnant women to say and I didn’t want to offend anyone. However, I really think it needs to be mentioned. I hear it way too often, and although I know that it’s just a thing that people say without actually meaning, I’m never quite sure what to say in response. It sometimes seems like people don’t appreciate how hard it is having a baby in NICU.

I can only imagine how uncomfortable being heavily pregnant must be. I was already starting to feel uncomfortable with my small bumps, but surely it can’t be worse than spending weeks or months in hospital, your baby undergoing numerous medical procedures and being unable to comfort or hold your baby properly? At least being uncomfortably pregnant only affects you, not baby, siblings and extended family.

There’s also the fact that NICU mums are probably grieving that missed third trimester. Even after my second premature birth, which was half expected although not quite as early as it actually happened, I felt robbed of my bump and didn’t feel at all ready for baby to be here. I still feel cheated that I missed out on the last heavily pregnant stage and it makes me sad hearing people see wish it away. (Of course, this is a blanket statement and obviously there will be cases where mum or baby is actually unwell and not just uncomfortable. I’m only referring to cases where there are no medical issues, just a healthy pregnancy.)

Instead feel free to complain about how uncomfortable you are, I’m sure your NICU mum friend will be able to empathise, just don’t add the throwaway comment of “I wish baby would just arrive now”.

8. “At least you didn’t have to give birth to a bigger baby so it won’t have hurt as much as if baby had been full term.”

It’s impossible to compare the pain of childbirth with another person. Of my two births, I can safely say that I found the birth of my second, smaller baby much more painful than first time round. So the theory seems to fall down.

I think the reason it felt more painful is because I was so worried about him arriving 9 weeks early. That’s more than two months before he was supposed to be here. My first baby was 6 weeks early and while that was scary, I had been assured by doctors that it wasn’t really “that” early in terms of prematurity and the likelihood was that everything would be fine.

Nine weeks, however, felt so much earlier than six, and although doctors were optimistic I didn’t get the same feeling of confidence from them. I’d also been through the neonatal unit before and knew during labour that this time we’d in for longer. With a toddler at home who I hadn’t fully prepared for baby arriving right now and a hospital on the verge of lockdown, I think my body was doing everything it could to hold Harris in and I just couldn’t relax into the hypnobirthing breathing in the same way I had with Dylan.

Giving birth early also means that the birth plan, if you’d even got as far as writing one, goes out of the window. You are faced with giving birth hooked up to every monitor going, with what feels like half the hospital either in the room or waiting outside. You also know that your baby is going to need immediate medical attention and you likely won’t be able to see, let alone hold, them.

So the panic and worry isn’t conducive to a relaxing, minimal pain birth experience, no matter what size baby is. Also, many NICU mums have had sections as the birth is often due to a medical emergency and I don’t think the size of baby has any baring on the pain caused by that.

Instead say “giving birth so early must have been terrifying.”

9. “You don’t like staying pregnant do you?”

Why do people think it’s ok to say this? I get this one lots and I even had it from a few of the nurses in the neonatal unit. While I get that it’s probably meant as a joke to lighten the mood, it’s really not something I find funny.

I never wanted to give birth early and would have done anything to stay pregnant so my babies and family didn’t have to go through the trauma of weeks and weeks in hospital. I wish more than anything that I’d been able to finish my pregnancies normally, excited and counting down the days for the arrival of my healthy babies, instead of having all my birthing choices taken away from me and being petrified during my labour that my babies would be born horribly unwell or worse.

Instead, don’t make a joke, offer support either emotional or practical.

Baby having skin to skin with NG tube

So that’s my list of what not to say to a NICU mum. I’m sure there are other things that bother NICU mums but these are the top comments on my list. If you need help supporting a family member or friend through the neonatal unit, you can find lots of great advice on the Bliss website.

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