Musings on Premature Birth and Quality of Life

A few days ago, I was googling preemie parent blogs. I also was allowed into a preemie parent support group on Facebook. I disclosed right away that I’m not a parent but was myself born prematurely, but the parents loved to read my insights. One issue I’m struggling with in particular is that of quality of life as an argumetn for or against trating certain preemies in the NICU. One parent in the group said somethhing to this effect: that being loved beyond words is a good enough quality of life.

Even though I suffered from about every major complication in the NICU that is used for quality-of-life indicators – eye damage, a brain bleed, lung problems -, and I came out having major disabilities, I consider my uality of life pretty good. I realize I could’ve been more severely disabled, and that many parents deal with kids (and eventually, adults) who need more care than I do. Heck, on my ward I fall right in the intermediate range of care needs.

My parents at one point were in doubt about whether I should be treated, but they were told off by my neonatologist, saying they were just keeping me alive and not to interfere. This neonatologist later defended rigid policies on preemie treatment (whereby babies under 25 weeks gestationa re not treated), saying he sometimes meets preemies about whom he thinks: “What have we done?” I wonder at times if, were he to meet me, he’d think the same. I know that, judged by my writing, I’m pretty high-functioning, but I do need substantial support.

11 thoughts on “Musings on Premature Birth and Quality of Life

  1. This is a very inspiring blog post, Astrid. Even if you have health problems, it is definitely possible to be able to have a good quality of life. Never let any labels stop you from following your dreams! 🙂

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  2. wow this is so interesting, look forward to hearing more! You write very well! I was very close as a child when I suffered from meningitis, and have learning difficulties from it but was very lucky not to have been worse. I can’t imagine being in these positions as a parent! xx

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  3. It’s a very emotive subject and I think what’s right for one family may not be for another so I believe that each person has to make the decisions that’s right for their family, whatever they may be xx

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  4. I bet your parents are glad that you were given the help and support you needed and deserved. I know a girl born at 23 weeks – airlifted to hospital in the next city and she isn’t without problems but then so are children born full term. She is doing well and I think it’s awful that if someone else had been left to make the decision as to whether to save her or not based on gestation then she wouldn’t be here – and her life is worth a lot, and she is a lovely girl.

    And I think this is a brilliant post btw.

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  5. It’s lovely to hear your point of view Astrid as it’s one that is often ignored.
    You raise some key concerns – it is very emotive that’s for sure.

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