Top 10 things not to say to a preemie parent.
I’ll admit that before becoming a premature parent, I would have had no idea about what does or doesn’t annoy the fuck out of us as a group. So now I know, here’s the Top 10 comments to avoid saying, just in case you know one…
Whilst the baby is still in the Neo Natal Intensive Care Unit (NICU)
This may seem an odd one, but this is not really a congratulations moment, even though there is a new baby. There’s no nervy-exciting breaking of waters. No gleeful post-birth gathering of family members brandishing balloons and cards. There is no knowing if the baby will even be ok, and a family with their lives on hold. Just offer your friendship, love, and help, rather than the usual fanfare for now.
2. ‘When are they coming home?’
Funny you should ask, I’ve booked her in for half past two next Thursday. If a baby has been born prematurely, it can be weeks if not months before they are home. There is no set date, and it can change constantly due to setbacks and complications. It’s such an unanswerable question!
3. ‘I know a mum who had a 24-weeker who weighed less than a bag of sugar and now he’s a 6-foot grown man monster!’
That’s great for the man monster, but every premature case is individual. Perhaps I wouldn't go so far as to say dont say this one, but be careful how you phrase it and when you use it. The several times when things looked very worrying for Eva, it was so hard to have any headspace to use those comments as comfiort and ever imagine her not as a struggling preemie.
After the baby is home
4. ‘Oh they’re so tiny!’
This is the big one to NEVER SAY! EVER! I think other than a couple of people, this is the first thing anyone said on meeting Eva. To you, there may be a cute and dinky baby, but to preemie parents you’re pointing out how noticeably small they are which can be very upsetting. Plus, it ignores the fact that their size is because of their prematurity, which is linked to massively significant health risks they have faced and may still be facing as preemie babies. Similarly, announcing that your full-term baby is ‘massive’ or saying how much they weigh at their health visitor checks should probably be saved for non-preemie parents. To us, it’s just another kick in the balls whilst we continue the uphill battle to even get our baby to 6lbs.
5. ‘How premature were they? How much did they weigh?’
People can view prematurity as cute or interesting, like you’ve given birth to a doll or a fairy (rolls eyes). I used to get asked this a lot at baby groups and saw people’s curiosity as minimising the gravity of what we’d been through.
6. ‘I bet that was a shock! They must have just been keen to meet you!’
Yeah…the little tinker! NOPE. A lot of people assume prematurity exclusively means you went into labor early. This is so frustrating for preemie parents, because it can be for a whole host of reasons such as illness in mother or baby, complications, or like our experience - loss within a multiple pregnancy.
7. ‘My baby was a week early. I get it.’
You don’t. Whilst this isn’t a ‘who had it worst’ competition, it will be a blood boiling comment to a parent of an extremely premature baby, because it’s likely a week early baby will still have come home very soon after birth and that the ‘NICU slog’ was not a part of that story.
8. ‘So how old are they now?’
Well she should have come at ‘this’ time, but she had to come at ‘that’ time. So when she’s one she isn’t really one. And there’s no chart to correctly measure her because she’s a law unto herself. And I haven’t a scooby when she’s meant to be doing stuff like standing or talking. Don’t make me work it out, because I can’t go there again, and I’m shit at maths.
9. ‘Will they be behind or have problems?’
Hopefully not, but many premature babies have a list as long as your arm of risks of physical health problems and developmental delays in the future. Eva for instance had an early risk of cerebral palsy and bleeds to the brain which had to be checked. What’s innocent curiosity to you may be another upsetting reminder of the long-haul uncertainty prematurity brings.
10. ‘You’re out the woods now you’ve left the unit.’
This is another biggie for me. In Eva’s first few weeks home, we were back at the hospital for eye tests, blood tests, and checks on her medication. Every damn week. She had to have 4 sets of medicines twice a day for months afterwards, and going back to the place you had just escaped was unbearable. Then there are all the worries about weight and development. Not to mention the fact they are under a pediatrician for the next two years for regular checks. Walking out the NICU with that baby does not mean it’s over. Preemie parents need that recognised as they start their lives with their baby finally home.
So there you go…..may you never drop a ‘preemie parent’ bollock again! We’re a strong bunch, but we’re also sensitive and need a bit of TLC! I’m off to set fire to Eva’s growth chart and paediatric appointment cards….bye for now!