Wednesday, March 21

Knowledge is Power

So said someone clever and/or famous.

But is it?

In most situations, absolutely. No question about it. There are some situations and circumstances though when ignorance is bliss. Neonatal is one of them for some people. When I had Wriggles I had next to no knowledge of premature babies. I had some sketchy knowledge of Bliss as a family friend born with a congenital heart condition was an early case study but that was about it. Shortly after I came round after a trip to theatre I wad given some leaflets, two by Bliss and one published by our neonatal unit as a brief guide to having a premature baby. I think I could now recite them by heart; I read and re-read and re-re-read and re-re-re-read and, well you get the picture. I soon knew about positioning, the benefits of breastfeeding and the phone numbers for the unit but although I couldn't fault the information, I was no closer to knowing anything about actually possessing a premature baby beyond sitting next to an incubator. I knew none of the risks, the dangers, the infections and how quickly they take hold and then leave, I knew none of the pain and the breathtaking highs of having a miniaturised baby pressed against you.

Near the very end of the stay in NICU, I discovered the Bliss website and message board and a whole world opened up in front of me. There were "my" people who understood everything because they had experienced it before. There were answers too, partly that I went looking for deliberately and some that I didn't but I read voraciously, hungry for information. I understood some amounts of medical terminology after eighteen months previously my father had an extended stay in Intensive Care so I was familiar with many of the machines and wiggly lines on the monitor, albeit this was now a lot lot smaller. But I didn't know until the worst was over about many of the things that premature babies can experience. We were very lucky and missed any occurrences of NEC (Necrotizing Enterocolitis; an infection in the gut causing tissue to die), PDA (Patent Ductus Arteriosus; a blood vessel staying open in the heart) or IVH (Intraventricular Haemorrhage; bleeds on the brain ranging in scale) or other scary acronyms. In the main, any problems were situated around breathing and Wriggles' lungs and feeding, which was a reluctant process.

After discharge I became desperate to understand and find words for what we had been through so read and researched perhaps a tad obsessively about prematurity, causes of and complications of. Unhealthy? Maybe. Almost certainly. But I can't explain it; it was my coping and somehow soothed me that in case I needed it, the knowledge was there. I preferred to know too many answers than none at all. Yet, I do think that if I had known all I do now at the time, it would have completely freaked me out. If I am ever pregnant again, I know I will be on edge watching for signs of things going wrong. Should I ever have a premature baby again I will be second-guessing all the doctors. Sometimes it works to advantage. I know that my knowledge of medical terminology and my interest in basic medicine has both got health professionals to talk to me less like an idiot at times and to take me seriously if I say Wriggles isn't herself, rather than them blame it on teething. But back in NICU, I was quite happy pestering with a million questions and soaking it all in without having the pre-obtained knowledge. This ignorance is bliss state was just that; bliss. Answers obtained from medical staff is generally going to be subtly tapered-they will tell you what you need to know and leave out irrelevant, needlessly scary bits and any complicated terminology. Google on the other hand will give you warts and all and not state whether it actually matches your circumstances. (Other search engines are available....)

Now, eighteen months and counting down the line with a healthy scamp, I wonder if I have dwelled Too Much. I now know more than I will possibly ever need about problems that neither of us encountered as well as problems that we did. What good does it ultimately do me other than strike fear into me on behalf of my family and others? Then again, I have always been a worrier. If I wasn't worrying about this it would be something else. I prefer to know even if it scares me a little. We might be nearly out of the woods, but until we are for good, I want my textbooks* at the ready Just In Case.

*I don't really have textbooks. Honest.


  1. I can't imagine how scary it must have been for you. xx

  2. I am like you, I wanted to hear it all, the good, the bad and the ugly, I think what it comes down to, is it's ' better the devil you know'
    Apart from anything else, it is actually interesting! Very annoying when they hold back.. Google must be the Bain of their lives!! Nothings more annoying than when u find a real gem on google and they try to tell you your anxious, it's like ' no shit Sherlock! Now Translate that research and put it to me in laymans terms!'