55 Things a Preemie Parent Doesn’t Want to Hear (and tips on what to say and do)

When you become a preemie parent your entire newborn journey alters. You are thrown into a world that is scary, upsetting, unnerving and completely unpredictable. You lose all those firsts that should experience and you return home without your baby.

Even after your baby does come home, times can be tough and not all stories are straightforward. Whatever the situation is, those parents require support both emotional and physical. They need people to understand what they are going through and, most importantly, they need these people to be saying and asking the right things. Unfortunately, there are a lot of (ahem)

somewhat tactless comments that are made and time and time again it seems to be the same type of ones cropping up which is precisely why I asked a preemie support group for their own personal views and experiences of what has been said to them… Nope, none of these are made up or exaggerated, these are real. Some may not seem that bad to you but to a preemie parent going through an emotional rollercoaster they can hurt, they can hit a nerve and when said repeatedly, they can really grate on you.

The point to this list isn’t to shame those who have said them, it is to highlight what some things preemie parents don’t want to hear (and I will explain why) and making you aware of what they could hear from you instead.

The Look

• Is it a real baby?
• He’s the size of a doll
• When will their head look normal?
• Oh, she actually looks like a normal baby. I wasn’t expecting that.
• He doesn’t look premature. You can tell a prem by their big head
• He’s starting to look like a normal baby now

Any comments about how somebody’s baby looks or how you think it should look should be kept to yourself. You wouldn’t talk about a full-term baby in this way so please don’t do this for a premature baby. The use of the word ‘normal’ implies that they are not normal. They are completely normal we just don’t tend to see a baby at that gestation, they should still be growing inside the womb! Instead, talk about them as you would do with a full-term baby, they are cute will suffice.

Everyone’s an expert

• He wasn’t that early
• So and so was premature and he’s ok. He’s now 29 and 6ft tall!
• It could have been worse
• They probably got your dates mixed up!
• Babies come when they’re ready
• He was a good weight for his gestation
• Oh, well look at him now, he’s doing well
• At least you made it to xx weeks, it could have been worse
• Well, he’s 3 months old now so he’s not premature anymore
• They won’t be in that long because they weren’t that early
• 26 weeks is safe these days 

The fact is, any baby born before 37 weeks is premature. That baby should not be here yet and you cannot comment on it in any way like these above. My key bit of advice would be to listen to the preemie parents, provide support, ask what the doctors have said and show some compassion towards them. Please don’t ever tell them it could be worse because nothing feels worse than what they are going through at that moment in time.

The Pregnancy and Labour

• At least you didn’t have to go through the 3rd trimester
• At least you got your body back quicker
• At least you didn’t get stretch marks
• At least you didn’t have to be pregnant in the summer
• Oh, stop being so overdramatic, pregnancy is difficult for everyone
• At least you didn’t get to that uncomfortable stage in pregnancy
• If you hadn’t had worked she wouldn’t have come early
• It must have been an easy labour with them being so small
• At least you didn’t get massive
• At least you didn’t have to push a big baby out
• What was wrong with you/him to make him come early?
• So what did you do to get him to come early? (someone looking for tips!)

All any Mum wants is to carry a baby to full-term, to be able to experience the kicks, to have a big bump, to have the time to nest and prepare. A beautiful body is not a consolation to having your baby home, safe and well.

If any Mum out there wants tips on how to bring their baby sooner just stop and do your research… it doesn’t mean you just get a smaller baby.

The pregnancy doesn’t really need to be commented on in my view unless you are asking what happened in a sincere way. I was personally happy to tell my story because I want to raise awareness of Group B Strep and PPROM but not everyone will want to divulge. Why not just ask how the labour went like you would any other Mother? No need to jump to any conclusions.

The Arrival

• He was just to keen to meet you
• Look at it this way, you’ve got extra time with him
• You’ve got bonus time with your baby
• At least you’ve got a newborn for longer
• At least you can sleep whilst the baby is in hospital
• Saying congratulations (cards and presents)

Yes, I think everyone I asked got told these lovely statements about the baby wanting to meet them and that you get extra time etc. I know it is a way to try and make the parents feel better and for some, this will be taken in a lighthearted way, but it will all depend on the moment you choose to say it. When a baby is in an incubator, on oxygen and under constant care, it isn’t what they need to hear.

Having a newborn for longer? It. Is. Exhausting. I am currently at week 14 but he should only be 6 weeks old. Developmentally, he is somewhere in between I would say and yes, he is cute but it feels as though I’ve been waiting for him to change and grow and hit milestones for so long.

Never, ever tell preemie parents that they can rest and sleep whilst the baby is in hospital. Rest? The worry, the stress, the upset you go through means that you never rest properly. You are also living in limbo whilst trying to balance a normal home life with hospital life, there is no time to stop and think let alone rest. Sleep? The milk still comes in when a premature baby is born and those boobs still need emptying. We are talking round the clock pumping, which includes setting alarms during the night to get up and do this. I also want to add here that we want the sleepless nights because that means we have our baby home, healthy and well.

Ok, saying congratulations and giving cards and presents… There were mixed feelings on this comment with some parents liking the congratulations but with the majority finding it hard. The biggest problem is that it is upsetting that the baby isn’t home. I remember putting up all these cards saying congratulations on the arrival of your baby boy but he wasn’t here with us, he was in hospital and we had no idea how long he would be there for. Gifts are lovely, of course they are, but if you haven’t got a baby to enjoy them with it can add to the upset. For me, the biggest celebration was when we finally brought him home.

The Hospital

• She’ll be sleeping through by the time she comes home so no sleepless nights for you
• You’re lucky, the nurses will get them into a good routine for you
• I know exactly what you’re going through, I had to take my dog to the vets the other day
• Why is he still in hospital? He’s ok now isn’t he coz he’s out of his incubator
• Why do I always have to wash my hands?
• Why can’t I hold them too?
• Why can’t I visit more?
• Oh, I could never leave my baby in a hospital alone
• Is she not home because she doesn’t weigh enough?
• At least you don’t have to wake for night feeds

Routines, sleepless nights, not waking for night feeds? All a parent wants is all of these things. They do not want to walk away from that hospital with empty arms, that isn’t how this experience is meant to go. Stop and think about the anguish they are going through and show some empathy. Do not try and put a positive spin on it by telling somebody they can sleep because they would give anything to be woken every hour by their baby.

Instead of asking questions which may relate to how you feel (everyone wants to visit the cute baby, we all know that) why not ask them by showing an interest? The preemie parents aren’t preventing you from visiting. Most hospitals will have a very strict visiting rule which will usually exclude the handling of the baby by anyone except the parents. This is to keep the unit quiet for the majority of the day, to prevent the entry of illnesses and to aid the preemie’s development. I was told that William did so well because we didn’t over hold him and tire him out and because we didn’t always have visitors. Everything that is done is in the best interests of the baby.

As I mentioned before, ask the question in the right way. Instead of asking are they not home yet because of xxx, rephrase it to ask what needs to happen next to get them closer to coming home.

Development and Health

• Oh, he’s 1? He should be walking by now
• Why isn’t he smiling, crawling, rolling over yet?
• Are there any lasting effects or damage?
• Oh, so he’s gonna be behind then?
• I’m guessing you would have had a termination if you’d known he’d have all these health problems
• Bring him around, he needs exposing to germs to build up his immune system
• Why are you panicking over a cold?!

You cannot put a timescale on any baby’s development so don’t do it to a premature baby. Not walking at 1? Not even all full-term babies do. Yes, there will be a difference in milestones being hit due to the fact the baby shouldn’t be here yet but this shouldn’t be seen as a negative, it is just another part of prematurity. There is no need to rude about any of it either or to make assumptions.

Please respect preemie parents’ wishes to keep their baby indoors and away from the risks of germs for however long they need to. Once premature babies leave NICU they cannot return there if they become unwell due to the infection risk to the other babies. This will mean they will be admitted to the normal children’s ward which can pose a further risk due to the number of people visiting and the varied illnesses amongst the patients. Give the baby a chance to develop, to grow, to adjust to being out of a sterile environment. A simple cold can lead to life-threatening conditions.

Your Future Plans

• I bet you don’t want anymore after all this
• Will this happen with the next one?
• Will you be able to have more?

Please don’t ever make assumptions regarding future plans. Let the parents get through all of this first, it is something that can leave lasting emotional effects. The future to a lot of these parents is literally getting to the following day.

I think the main thing to take from this is that these preemie parents are going through something that brings about emotions that are impossible to describe to somebody who hasn’t been through it. The ups and downs of each day, sometimes each hour, the worry, the medical care, the exhaustion all takes its toll and sometimes the best thing you can ever do is listen, be a shoulder to cry on, offer support in all areas of their lives. 

Em and the Parents of Preemie Support UK

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