TOP TEN! | What not to say

Thank you to all the mums on our Smallest Things Facebook Page who helped compile this top ten list of what not to say to the parent of a premature baby….

untitled (4)“At least you can go home and get a good night sleep” – firstly, you don’t want to go home; going home means you have to leave your baby. Secondly – a good night sleep! Mothers of premature babies express milk every three hours to enable their babies to have breast milk via a naso-gastric feeding tube. The expressing routine is akin to the routine of feeding a new born baby, only you don’t have your baby with you, no babies cry at night to wake you to feed, just your alarm telling you its time to get up and express again. No, there are no good night sleeps.

images9J46MDT1“At least you got to miss that really big stage”. If health allowed it I would take the ‘really big stage’ (or final trimester!) any day over a premature birth that resulted in weeks of hospitalisation, separation and risked the unthinkable.

imagesDIPRKXTBBeing asked about your birth plan – premature birth is often sudden with little warning. Sometimes it happens so early that you haven’t even thought about names or decorating the nursery, let alone a birthing plan!

imagesTB6KW868“When I told another mum my baby was 2lb 10oz and she laughed and said “you must have just sneezed and he popped out” Utter disbelief that people can be so insensitive..”

imagesJV8WBVK2“I couldn’t have left my baby in hospital” or as one group of mothers told me – they couldn’t have left their babies in the first few months as they were attached to them feeding all the time. This is not what you want to hear when your experience of your new born is watching and waiting for the precious moment when you can hold them. And your experience of feeding is being attached to an expressing machine.    –   I found it most traumatic if people asked if I was breastfeeding. The sense of failure on that part every time someone asked and I had to explain about the suck reflex and tubes and expressing was immense”

imagesLewd comments about women with their tops off in the expressing room are NEVER ok!

images0VLZGFX3Don’t worry everything will be ok… Being told not to worry or given statistics on the good chance of survival – comments like these are rightly made to give hope and offer reassurance, but they can also brush aside the natural and very real fears that parents face. As one mother described, statistics and success stories can not alleviate the “overwhelming feelings that you are faced with when you first see your baby in a box with all the tubes coming out of their little bodies”.

untitled (4) “You can’t wrap them up in cotton wool” or “It’s only a cold.” ‘Only a cold’ can have serious breathing and feeding consequences for babies born too soon.

images31X5N2ZQGenerally any comment that mentions size or ‘catching up’ – by the time premature babies leave hospital they have usually doubled if not nearly trebled their weight. ‘Catching up’? They will have had the biggest growth spurt of any baby you’ll ever likely to meet! And size; parents of premature babies are usually aware that their babies are smaller than others, we don’t need reminding! I was often stopped in the street and would be asked all sorts of question by complete strangers about my ‘tiny’ baby. I found myself explaining and sharing details I would never normally have shared with passersby. An abiding memory though was a shop assistant who called out across the shop floor to her colleague “come over here and have a look at this premmie baby”.

untitled (5) “Thank goodness all that is over”. For those who thankfully bring their premature baby home, leaving hospital is rarely the end of the journey. Children born early may have ongoing health needs; if they don’t you may worry they will, and the experience of neonatal intensive care will always stay with you.

11 thoughts on “TOP TEN! | What not to say

  1. Pingback: Time to Talk: PTSD the hidden cost of NICU | The Smallest Things

    1. Premmie Mum

      I understand that people don’t completely understand when they haven’t experienced it, but for heaven’s sake, how about a little compassion! *grr*

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  2. Premmie Mum

    Ha! I remember a friend telling me, she made her husband look up premmie babies on google before they came to visit us at the hospital, so he wouldn’t be shocked.

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  3. Claire Welsh

    We’ve just had an incident which relates to wrapping up in cotton wool! We refused to attend a family party because one of the toddlers going had chicken pots last week! All they kept saying was “she’s clear now & wasn’t that poorly!” My baby is still only 37 wks weighing 4lb 11oz!! I’d never forgive myself if anything happened! So frustrating people just don’t get it!

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  5. Tegan

    I got “at least he’ll be smaller for longer” and “oooh I always wanted a teeny one”. No!! Believe me you wouldn’t want to go through what we did and still are. I wouldn’t wish it on my worst enemy!

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  6. Claire

    I had so many people say; “they were obviously so keen to meet you” following my twins being born 10 weeks early. Somehow I don’t think my little girls who could barely breath for themselves decided that they just wanted to nip out to say hello one day! You can not blame pre-term labour on inpatient babies. People just don’t get it.

    I had others say things along the lines of “at least you didn’t get stretch marks!” Unbelievable!!!

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  7. Marie

    When I called first time with my older brother he ask how I’m doing and I answered that it’s really difficult… He answered back ‘Now? Now it’s easy. Wait when you will be at home. Then it will be difficult…’ NO! I looked forward so much on the moment when we will be at home. And I’m enjoying it sooo much! In hospital it was really difficult! My heart was breaking every time leaving him there, not knowing what will happen, if someone will cuddle him when he will begin cry… Asking if I can cuddle my child, if I can change his nappy… And good night sleep with expressing every 3hours 30 minutes plus preparation and tidying and thinking about your baby in hospital with empty cot next to you is really not good night sleep!

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