Tuesday 19 July 2011

The Watch and Wait – Prematurity and Long Term Problems

In this post, I am discussing the sort of problems that can jump up and grab you and your family by surprise later, rather than the sort of conditions that are known about at birth or soon after birth and continue to cause complications and difficulties as the child grows and develops.

I recall being asked several times, when will “they” know if Joseph will have long term problems from being born so early and so small. I never really knew how to answer that question. Because, I had worked with adults who were born prematurely and as a result had severe disabilities. Sometimes it is crystal clear when a baby has problems, and if they have lost oxygen at birth, not had the opportunity to benefit from the corticosteroids given to the mother to enhance the babies lungs, not had surfactant at birth, it can be easier to predict whether or not there will be some problems.

When being discharged, I asked one of my favourite consultants that very question. “Is Joseph likely to have long term problems and if so when will we have an idea that there is an issue?” The question was answered by one of the junior doctors, who had recently completed a module on this at university. He explained that as well as physical problems, and general delay, those former premature babies, once at school, can have learning difficulties. He explained that the learning difficulties are often very specific and quite difficult to spot. He gave no reassurance that we would have long term support in this, and we would have to be on the ball as parents.

Later I looked into this further through Bliss, the charity that supports babies born too soon, too small, too sick. It explains it beautifully. One of the huge problems we, as parents, have is that there is little data, and the major study done in this area, Epicure, is, in my opinion, flawed. I would urge anyone concerned about prematurity and ongoing educational problems to read this Bliss leaflet. I think my opinions on Epicure deserve their own post at some point.

Research into the area of learning difficulties and specific problems such as ADHD and autism is ongoing, and but at present, findings are inconclusive. In April 2008 the Daily Mail (yes I know) reported “one in four premature babies faces autism”. This NHS article carefully unpicks the research and discredits the headline. Research has been conducted into conditions like autism, however it is very difficult to “weed out” other causes of autism. And in fact, it is often low birth weight that is implicated rather than prematurity.  No one can say whether prematurity alone can lead to autism. I had read some of the research before Joseph was born, and I was always concerned that this may have to be on our radar. It is one of the reasons I have been very careful about over stimulation, I have concentrated on him having developmentally appropriate toys that are quite simple and natural. I have taught him signing early on, but also encouraged speech through play, songs and reading, without “hot-housing” him.

Another potential risk of being born prematurely, particularly for girls, is the risk of early onset of puberty. As the article explains, early puberty can lead to other problems such as diabetes and polycystic ovarian syndrome. What I find startling, is that there is little information given to parents when weaning their babies and feeding toddlers, who were born at low birth weight. I have heard of so many parents who are desperate to build their babies up, but could be leading them down the path of obesity in later life. Although Joseph was IUGR and very small, I have always been careful with his diet, to ensure it is balanced, with plenty of calories, and but also lots of fruit and vegetables, and I encourage him to be as active as possible (sometimes he takes this to extreme, I have, yet again, had to peel him off the shelves today!) I find it alarming that unless your child has very specific problems, in the UK you are largely left to your own devices. We never had any advice on infant feeding at all, and have never seen a dietician, and my Health Visitor, bless her, didn’t have a clue. 

From what I have read research this post, two things strike me. I looked up prematurity and later problems, and to be honest, there are so many conditions that are potentially linked to premature birth, but a lack of evidence. I know that research is ongoing, and is one of the reasons that I am supporting PiggyBankKids, as they look into this area in more detail.

Secondly, that long term support needs to be put into place for the children who have been born too soon, and their families, in order to detect issues well into childhood and beyond. And I think we are a long way from this at the moment.


  1. The thing I find the most frustrating is indeed the complete lack of support that we've experienced since leaving the neo natal unit. Yes we have been INCREDIBLY lucky that so far T has not had any major health problems. We don't have an appointment to see our paediatrician now until December. That's brilliant of course...until you find out that that's because our area is over populated and they are spreading the appointments out further to fit everyone in. So are there things I need to look out for in my child's development? Does my health visitor have any idea about the diff needs for an extremely prem child? Has anyone ever given me any guidance in my GP's surgery? No. So I get my information myself because I look for it. And people like you care so passionately to share what you find with everyone else. Thank heavens for people like you Kylie. Thank you. x

  2. Very well written! It's so hard... Once your child has 'escaped' from SCBU, you think you're out of the woods. Then something else comes along to bite you in the bum.

  3. J was born @28 weeks. In NICU for 5 months. J has Cystic Fibrosis so we are very closely monitored from that side but even though we have been home from hospital 8.5 months we have only just had our first neurodevelopmental appointment. And this was only because I asked about it at our C.F clinic. My health visitor (as lovely as she is) doesn't have a clue when it comes to a very prem baby and our dietician (c.f) knows very little of prem needs. I feel that we are constantly having other issues pop up (the most recent being a larygeal cleft that was mis~diagnosed as reflux untill I nagged that it felt "wrong" so much they finaly investigated!) I know we will have a rocky road with J's C.F but worrying about what "prem" issues we will face scares the s*** outta me! I feel we have really been left to sink or swim......What option do we have?

  4. My heart goes out to you, its so complex having a premature baby, and so complicated having a baby with long term health condition, so to have both must be really challenging. I know my HV has been as much use as a chocolate fireguard with Joseph and we've been totally on our own. You can't be the only ones in this position, and I hope that as time goes on you find, like with us, the the prematurity is less of an issue.