"Reassurance"

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.