Friday, May 06, 2005

Being a Preemie Mum

There has been some discussion on a couple of the forums that I belong to, about the effect that being the parent of a preemie has. One of the mums on one forum is doing some research into the effects of a commonly used phrase amongst the medical profession - "He'll catch up"

It got me thinking, I did a piece in Michael's website about how it feels to me, being the parent of a prem. The feeling of devastation at finding yourself thrown into this completly alien world, and how you need, and look for the support and honesty of the medical profession to help you through it.

We didn't get it, and the more I think about it, the more I think it was that one phrase, "He'll catch up by the age of two," that did so much damage.

As a parent I clung to that magic age, by the time Michael was 2 all his preemie issues would have resolved and he would be ok. So was I living in cloud cuckoo land??? Maybe just maybe I should have realised that things weren't right, and that everything that Michael was going through meant that there was no way he would catch up. But I didn't, I clung to that magic age, the closer we got to two the more apparent it became that things weren't right. So then I started making excuses that maybe we could discount the first year of his life because he'd been so sick. So maybe all would be well by the time he got to three, but as we lived through the ages of two to three it became more apparent that all was not well.

It hit home even more, when one of Michael's Consultants told me that I couldn't have a baby at 24 weeks and expect normal. When I asked why I didn't know that, he advised me that they, "didn't tell parents, only told them of the risk of Cerebal Palsy," and suggested I read the research, this whole discussion left me with an intense feeling of anger, at having been lied to and deceived. Especially given that time and time again when Michael was in NICU we had asked for information, and not been given the answers.

Later the same year, we were asked if we'd known what life was going to be like. I had to be honest and say that no-one had told us the things that we faced as parents of a premature baby. I didn't even know that Developmental Delay was a proper diagnosis, I thought it meant that his development was delayed but that he would catch up. There's that phrase again! - No-one asked if I understood what Developmental Delay meant, no-one took the time to explain it, it was just a phrase that kind of crept in when people were referring to Michael.

The realisation that your child has major issues and that you are not going to get the normal that you felt you were promised, is devastating. It's like a grieving process that you go through, because all the hopes and dreams that you had for your child and their future have been snatched away.

I think the phrase "Catch up" when referring to micro-preemies is one that should be permanantly removed from Dr's vocabulary.

1 comment:

Jossie said...

Your blog is great! It's hard to find blogs with good content and people talking about cerebral palsy these days! I have a secret cerebral palsy blog if you want to come check it out