Wednesday, March 14


I am always surprised by a common reaction to prematurity and low birth weights. I'm not speaking for all or other premmy parents as they may not hold my views; everyone has their own opinions and anything surrounding personal experiences or children is so intensely intimate that we will all deal with situations and people very differently.

My daughter was born just under 28 weeks weighing 1090g (2lbs 5oz) which roughly is on the fiftieth centile.

"That's a really good weight."
"It's a really good gestation."
"It's really all plain sailing now isn't it?"
"Ah well, these things happen. It's fine now."

Now. Just because Wriggles was born at a good weight for her gestation, I do not count 1090g as a good weight.
Yes, I am grateful that she wasn't IUGR (Intrauterine Growth Restriction), or small for her dates, but 2lbs 5oz is tiny. People underestimate how small it is. There sometimes can be a misconception that as long as the weight isn't on the smaller side of 1lb, then it is all fine. 2lbs 5oz is still little bigger than a hand. 3lbs is still tiny. 4lbs is still tiny. These weights, under 5lb are deemed low birth weight for a reason: they are smaller than average. They are at least half of the average born term baby.

 29-and-a-bit weeks
Likewise, 27-28 weeks-well yes it is good that the pregnancy has got that far and passed viability. But it is still premature. 12 weeks to be precise. Full term is considered between 38-42 weeks. Pregnancy is this figure for a very good reason, to allow the baby to develop and grow to the right size ands ability to survive in the world. The trouble is that weight and gestation are never necessarily indicators of a baby's journey in Neonatal. Some very premature babies may have straightforward journeys feeding and growing, whilst some later premature babies may a more bumpy ride and remain there longer than anticipated. Babies are generally discharged around their due date, but as in birth of a term baby, it is an estimate early. Some go home slightly earlier, some can stay for days, weeks and sometimes months afterwards. There are many factors that will determine this including birth circumstances, whether they get any infections, ability to learn to feed, how many transfers they may need, if there are any complications such as bleeds on the brain, if there are any congenital or acquired issues, how quickly they graduate from breathing support and how well they can regulate their own body temperature. This can also apply to full term babies who have to spend some time in Neonatal. I imagine just because your baby has made it to term, that is little reassurance when you have been separated and hear your newborn needs specialist care.

Personally when I hear comments like above, I have to try very hard to bite my tongue and snap "So I imagine you will be wanting a premature baby too, then as it is so good." Though this urge has lessened with time as acceptance has grown, it still rankles me every time I hear "oh what a good size" or similar. In my eyes, the only people that can say such things are those who have been there, done it and got the t-shirt. Then it is different; it comes from the heart. It is not ignorant reassurance but hand holding from someone who has a very clear idea of what the family are going through.

I don't mean to sound nasty by saying 'ignorant'; it is a difficult situation for those around the family as well, and it is human nature to smooth over a wound and paint a positive picture to get through the day until the next stage. It must be hard as you can be damned if you offer support and damned if you don't. I personally found that what I needed was people to be there, but not necessarily to offer niceties and their opinions. If you are not medical or Mystic Meg, you don't know. Sometimes even if you are a doctor or Mystic Meg, you don't know. It made me feel even more isolated when people offered platitudes and I felt a great pressure to be very grateful and chirpy, when all I needed and wanted was to come to terms with it myself. Instead at times I felt responsible for looking after other people too. The best friends were those who would sit wordlessly or offer distractions and practical help. Those who would never ask why I was crying or sad but those who would let me talk when I wanted and simply offer chocolate biscuits when I did not. Those friends hold a very special place in my heart, and still now are the ones who understand when I have a bad day now. They don't always sympathise; just offer a hug and some of their time. In the same way that I cannot off sincere or have a true understanding of other situations that I have not experienced, unless you have walked in someones shoes, you cannot second guess what they are feeling. You can use common sense, empathy and other people's experiences to have a jolly good stab at what they might feel, but you won't always hit the nail on the head. But then, as the person going through it, you don't always want someone to hit the nail on the head; you just want someone to be there for you.


  1. You're right of course. I saw a 24 weeker fly through NICU and watched a 33 weeker almost die. I have to admit though to feeling slightly annoyed by the dramatics surrounding feeder growers. Don't get me wrong, I know it's hard for anyone being separated from their baby but one thing I realised from having a sick baby ( and I'm sure you will agree) was that the NICU journey has levels. There are bad days, very bad days and very, very
    Bad days. On the very ,very bad days I wished I'd enjoyed the bad days more. So I do think the experience of having a very sick baby is different to having a feeder grower but agree this shouldn't be gestation / weight related. Basically, everybody should feel sorry for me the most as I had the hardest time :-D x

    1. I'll get my violin out ;)

      Symphonies aside though, I agree and think you're right. I completely understand your feelings about the dramatics and the bad days vs the very very very bad days. It's so hard to enjoy even the bad days at the time though isn't it, (easy on reflection!) as when you are in the moment a bad is still that: a bad day. Although my time with Wriggles was relatively not-so-bad compared to others (we had our fair share of minor infections, swollen-ness, apnoeas, needing stimulation, stubbornness to learn feeding or kick any breathing support but apart from two dodgy weeks, somehow escaped any more serious complications or infections and were incredibly lucky that our nearest NICU just happened to be the regional unit with one cot left. Complete fluke) I am acutely aware that it could have been much, much more complicated and serious. I think people that had far more scary time of it are very entitled to bite off anyone's head who suggests that it is "all fine really, isn't it?!" Why people think that they will be able to predict the path of an NICU is genuinely beyond me. Likewise the notion that once the baby is out, everything is hunky-dory and it is exactly as if they are still inside and all they have to do is chunk up. Do they think all the monitors are accessories?!

  2. I don't know what they think, it's beyond me. I suppose an outsider has a whole different set of rational. I think one of the biggest lessons I've learned from all this is 'don't judge what you don't understand' and I've learned that from feeling misunderstood.
    Ahem... Now what was I saying about feeder growers? :)