WRITTEN BY HELENA (GUEST WRITER)
Both of my boys were born prematurely, and each needed to spend a number of weeks in neonatal care. During that time, and since, I’ve had people make comments which were less than helpful and often upset or angered me. It can be hard to know what to say to someone going through NICU so I’ve put together this list which will hopefully help if you have a friend or family member who is going through this tough experience.
- “When will you get home?”
This can be difficult to answer. The chances are that Mum will get home much sooner than the baby, so who are you actually referring to? In the worst of cases, mum and dad might not actually be sure the baby is going to come home at all.
The situation changes really quickly in the first few hours and days so this question is really unhelpful at the beginning in particular. “We aim for a due date” is basically all that a doctor will tell Mum and Dad, even when things are going well. They never change this answer as things can change with a baby in a heartbeat. Every time you ask a parent “when will you get home”, you will only be reminding them of just how far away the due date feels.
Five weeks after my youngest was admitted, we had no idea he was even close to coming home until the day before. 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”.
- “Have you asked if you can stay overnight?”
Do you really think any parent wants to leave their baby behind? Of course they have asked if they can stay. There just isn’t the space in neonatal units in the UK for every baby to have their parents with them overnight. The unit we spent all those weeks in with my boys has three bedrooms reserved for babies who are a night or two away from going home so parents can stay knowing staff are just outside if they need support. There are significantly more than three babies in the unit at any one time.
There is no worse feeling than leaving your baby behind in the hospital. It just doesn’t feel natural to leave hospital having given birth without a 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.”
- “Why don’t you just sleep on a chair so you can stay all night?”
It really isn’t a case of “just” sleeping on a chair beside your baby’s incubator or cot. You make it seem so easy saying “just” and that little word can make mums feel like they are not putting enough effort in.
Most new mums, exhausted after giving birth, can lie in bed, cuddling and feeding their newborn for the first few hours, even days. NICU mums have to move between the postnatal ward and neonatal ward only to sit and look at their baby from an uncomfortable chair.
Many mums will have had a traumatic birth and are far from being well themselves. I’m sure most mums would “just” sleep on a chair if they were physically able and they knew the baby was only going to be in for a night or two. But sleeping on a chair really isn’t an option when you know it’s going to be weeks or months. Baby needs a healthy mum who isn’t running on zero sleep.
Instead say “It’s awful that you are separated from the baby, I can only imagine how hard that is.”
- “At least you can have a full night’s sleep while the baby is still in hospital!”
Seriously, don’t even think about saying this. First, think about how difficult it would be to sleep if you were separated from your new baby who is gravely ill in hospital. Then remember that most NICU mums will also be waking up to an alarm to pump milk every three hours for their sick baby. Believe me when I say that being woken by an alarm at 2am makes it infinitely harder to get back to sleep than if you’d been woken by a baby.
In addition to being woken by the alarm, you have to then wake up enough to pump, go downstairs to put the milk in the fridge and sterilise the pump kit ready for the 5am alarm call. Oh, and you’ve probably phoned the unit for an update on how the baby is doing.
Plus there’s also the fact that instead of relaxing at home and napping with the baby during the day, you are instead travelling to the hospital to sit on that uncomfortable chair, wishing you could touch and cuddle your baby. So no, getting more sleep is definitely not an upside to a 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 the baby”.
- “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.”
You probably think that saying something like this might make a NICU mum or dad feel better but, in reality, comparing their baby to another is far from productive. All babies develop at their own rate, not to mention the fact that they are all born with different issues.
It just makes you feel worse when it gets to 4 weeks and your baby still isn’t close to being sent home. 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”.
- “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. I wish so much that I’d been able to spend those precious first moments with my babies, time that we will never get back. It just seems so unfair that someone can say that they wish they hadn’t had to. Maybe it’s easier to appreciate how special those first few hours and days are with a new baby once you’ve had them taken away? Plus, see above regarding the “good sleep”.
Instead, just don’t mention it, even if that’s how you feel. NICU parents haven’t been able to make that choice and would probably do anything to be able to cuddle their baby as much as parents of full term babies can.
- “I’m so uncomfortable, I wish the baby would just arrive now.”
I’ve heard this so many times from pregnant women, even ones who know my history of two premature births. I almost didn’t include it as I didn’t want to offend anyone, however, I really think it needs to be mentioned. 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 just feels like people don’t appreciate how hard it is having a baby in NICU.
I was already starting to feel uncomfortable with my small bumps so can only imagine how uncomfortable being heavily pregnant must be. But surely it can’t be worse than spending weeks or months in hospital, being unable to comfort or hold your baby properly and watching the baby undergo numerous medical procedures while you just have to sit and hope? At least being uncomfortably pregnant only affects you, not baby, siblings and extended family.
Remember that NICU mums are probably grieving that missed third trimester. My second premature birth was half expected but I still felt robbed of my bump and didn’t feel at all ready for the baby to be here. I really do feel cheated that I missed out on the last heavily pregnant stage and it makes me sad hearing people wish it away. (Little disclaimer, this is of course a blanket statement. Obviously there will be cases where mum or baby is actually unwell, not just uncomfortable, and 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. Please just don’t add the throwaway comment of “I wish the baby would just arrive now”.
- “At least you didn’t have to give birth to a bigger baby so it won’t have hurt as much as if the baby had been full term.”
I don’t think it is at all possible to compare the pain of childbirth with another person. Out of my two births, I can safely say that I found the birth of my second, smaller baby much more painful than my first and so the theory seems to fall down.
My second son arrived 9 weeks early. That’s more than two months before he was supposed to be here. My first son was “only” 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. The doctors were optimistic that he would be ok in the long run but I didn’t get the same feeling of confidence from them as I had the first time round. I’d been through the neonatal unit before and knew during labour that this time we’d be in for longer, with a toddler at home who I hadn’t fully prepared for the baby arriving right now and a hospital on the verge of lockdown.
I think my body was doing everything it could to hold him in and I just couldn’t relax into the hypnobirthing breathing in the same way I had before. The panic and worry meant I just couldn’t calm myself down so I’m sure that led to the birth being more painful.
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 instead need to give 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 you likely won’t be able to see your baby, let alone hold them, because they are going to need immediate medical attention to survive.
It’s not the relaxing, minimal pain birth experience you were probably hoping for, 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.”
- “You don’t like staying pregnant do you?”
Why do people think it’s ok to say this? I get this one far too often, even 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 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. More than anything, I wish that I’d been able to finish my pregnancies normally, excited and counting down the days for the arrival of my healthy babies. Instead, I had all of my birthing choices taken away from me and was petrified during my labour that my babies would be born terribly unwell or worse.
Instead, don’t make a joke, offer support either emotional or practical.