Wednesday 19 October 2011

Prematurity is Not a Lifestyle Choice

One of my friends shared this piece of research today. It's a study conducted by Imperial College London that states that prematurity can cause lasting health problems in those adults born prematurely, specifically born 33 weeks or younger in gestation.

Now looking at the research, its first, very obvious problem is that the study group was very small, only 48 people aged 18-27 of whom only 23 were born prematurely. Obviously a lot more in depth research is needed looking at a much larger group to get a better picture of prematurity and its effects later in life.

The researchers are calling for better monitoring and follow up of premature children throughout their adulthood.

I have very mixed feelings about this research. Firstly, Joseph has been discharged from all paediatric follow up, this happened before he reached the age of 2 corrected. I'm sorry, but we haven't got early intervention and developmental follow up right in this country across the board, it really depends on where you live in the country, how well your premature child will be followed up. I really think that the emphasis should be on getting this right first. It is very clear that the effect of prematurity can be mediated somewhat by good follow up and experienced therapists. So my point is, yes, adults who were born prematurely, it would appear, would require follow up throughout their lives, but my point is that we haven't got the basics right for our premature babies and toddlers, and I think this needs to be a priority. I am very concious that there is a limit to the health budget, but surely better care and follow up of our premature babies will have benefits into adulthood?

Secondly, if the outcome is that clinicians will be more aware, and our premature children and adults will receive proactive health care then that can only be applauded, however, my concern is that this research and they way in which it is presented, will only serve to worry parents more. I'm also concerned that should this become a NICE guideline, it may put further pressure on the health service to consider whether we work to help premature babies the way we do now, if by saving them, we are creating further problems for the NHS. I truly hope this is not the case, however there is already a perception that a premature baby becomes a poorly and needy child and adult, and this is not necessarily the case.

Attached to premature birth is guilt. I haven't met a mother yet who doesn't, usually wrongly, hold herself completely responsible for the rough start her child has had. Prematurity, unlike smoking or alcohol abuse, is not a lifestyle choice. No one would choose to knowingly have a tiny, vulnerable little baby who faces an uphill climb simply to survive. And then, to have to face the knowledge that not only will they have a tough beginning and childhood, but also a predisposition to disease in the future, merely due to their prematurity, that's a difficult thing to face as a parent.

I hate this term, however I think its relevant here, there is a complete lack of joined-up thinking and health promotion of the premature infant into adulthood. We need a much better approach moving forward. The rate of premature birth is going steadily upwards, as we save babies who in earlier times may not have made it.

I am grateful that Bliss helps and supports research such as this, and I think its great that there is interest in this area, I just hope that the will is there in the NHS, as well as the funds, to put the findings into practice.


  1. First time reader and commenter, which is unusual for me as I'm normally a complete lurker. I'm also an Australian married to an Englishman and my son William will be 2 in January. He was 26+1, developed hydrocephalus due to bleeding in the brain which is now under control and he is doing very well.
    With regards following through on prematurity outcomes, I signed us up to a project being run on behalf of our local NHS Trust (Barking, Dagenham and Redbridge). This will look at how the services provided to William have helped/not helped in his development into childhood, though not any further.

  2. Thank you so much for commenting. The research you are taking part in sounds fantastic, and very beneficial. And ongoing research is important. I hope William continues to do well, he sounds a little star. I know another Aussie prem mum who is closer to you if you wanted to make contact.