There are a few things I would really avoid saying to a parent of a premature baby. This list doesn’t cover everything but is a good start on what not to say to a preemie parent.

You’re over reacting

Am I really? I just went through a traumatic birth where I was told that my baby needed to be delivered 10 weeks early. Not only was it 10 weeks too early but they medical professionals didn’t think my precious baby boy was going to survive the delivery. In fact he had a 20% chance of surviving delivery and a 10% chance of surviving beyond delivery.

Me asking you to not come round when you have a cold or asking you to wash your hands for the fifth time during your one hour visit is not me over reacting, it’s me trying to protect my precious baby. He’s fought so hard to live and it’s my job to make sure I do everything in my power to help him keep on doing just that – living and thriving!

You’re lucky you didn’t have to push your baby out

ARGH! Nope I was rushed in for an emergency c-section that I wasn’t prepared for. I arrived for a routine scan and was taken up to theatre. 2 hours and 2 minutes after my appointment time I had become a mother 10 weeks earlier than planned. I then had a six week recovery period from what we, as a society, seem to forget is major surgery. My hormones were all over the place as they accelerated my body into motherhood only I didn’t have a baby at home to mother.

I am one of the lucky ones to have never needed an operation before in my life and I have never broken a bone that’s needed hospital treatment. I have never even had a tooth filled! So recovering from a c-section was quite the shock.

Mum holding hands with her premature baby
Me holding hands with my premature baby boy

It must be great having the nurses do everything for you

There’s no denying that. However every instinct is telling you to look after and protect your baby and yet you have to trust strangers to do this vitally important role. The doctors and nurses are amazing and will encourage you to get as hands on as possible with your babies care. You never expected to be in the NICU though. When you are told about pregnancy and birth you seem to be given the facts and the positive. Very little is done to talk about the negative or the traumatic. I get it, you don’t want to scare women but at the same time when they are suddenly faced with this situation it would be nice to feel an element of preparedness.

At least you get to sleep through the night

Do I really? How did you figure that one to be right? Regularly waking in panic and confusion from a bad dream not to mention the alarms that I set for through the night. I have no baby to tell me it’s hungry so to maintain a supply breastmilk I need to get my body to think it is needed for night feeds by getting up through the night every 3 to 4 hours like any mother with a newborn.

I did have one or two nights that I intentionally didn’t set alarms out of sheer exhaustion. If it was an option though I would still chose to have my baby at home and keeping me up through the night. I still woke up to ring the unit for an update though.

You can’t wrap him up in cotton wool

I can and I will. I hated being told this familiar phrase. My son was my full time responsibility whilst I was on maternity leave. We spent 73 days on two different neonatal units and then after only having him home for four days he went into respiratory arrest and we had to resuscitate him at home. This was the reason I didn’t want to take him out and expose him to the big bad (germ filled) world.

I couldn’t literally wrap him up in cotton wool but I was about to do everything in my power to keep him as safe as I knew how to.

Winter lock down!!! That’s a bit excessive

No it’s really not. Premature babies have much lower immune systems and usually weaker lungs. A simple cold to you and me can be life threatening to a preemie. A simple cold is what caused my sons respiratory arrest at home. Once he was home again I was picky about who could visit and insisted on lots of hand washing and sanitiser fluid!

This what not to say phrase can easily be turned into a positive. Instead why not ask why a preemie parent is in winter lock down and what you can do to help?

It’s only a sniffle I’ll be fine to visit

No no no! I cannot stress enough that a sniffle means you should be staying well clear! For tiny, under developed and possibly scarred lungs (from being intubated) a cold can be devastating. If you have a sniffle then stay away. With the wonders of technology you can do a video call instead. You will be glad you waited for cuddles rather than living with guilt if you passed your sniffle on. This has to be my strongest what not to say suggestion!

Babies hand holding a parents finger
Babies hand holding a parents finger

He’s been discharged so he must be ok

Hmmm…. Just because your baby has been discharged from the neonatal unit does not mean they are well. It does mean that the level of care they need is at a level that you can now do at home. My son was discharged on 10 different medications that needed to be administered 17 times per day. He still had Hydrops even though it was stable and the fluid was draining very slowly. He also had his heart condition Supraventricular Tachycardia (SVT) which we needed to look out for.

He was much better than he was during his neonatal stay but he was still a poorly baby.

You’re lucky you only had to push a small baby out

I didn’t get to experience labour but I was told by several other preemie mums that it was a painful experience. One midwife also told one of the mums that premature labour is more painful than going into labour with a term baby. Your body only finishes widening your hips and softening relevant joints in the last few weeks of pregnancy. This isn’t something I have looked into but it rings true from other things I have read about the third trimester.

I can get why some people may have these misconceptions and I also get that unless you have been through this experience it can be hard to comprehend. I certainly didn’t understand it prior to having my little boy. Some of these suggestions of what not to say are ones that I had said to me and they took me by surprise, especially as they mostly came from complete strangers. Certain people could do to think before they speak though. Some of this is said to make the situation light-hearted and while that might be OK later down the line depending on the preemie parents sense of humour I would advise against it especially in the early days.

If you liked this blog then you might like the frequently asked questions blog from a few weeks back!

Did you see…

Also did you see that our NICU diaries are now available on Amazon! There are 5 diaries to choose from:

Green diary with duckling, dinosaur and giraffe
White diary with duckling, dinosaur and giraffe
Duckling diary
Dinosaur diary
Giraffe diary