I have recently read an article in a small Australian Magazine about natural parenting in NICU and SCN. The article describe this women's own journey with a son born at 34 weeks who had a 10 day SCN stay. At the end of the article she gives a list of suggestions to support parents with babies in NICU/SCN. I fully understand that for this family those ten days were extremely difficult but for some reason I have this bitter feeling of resentment that the suggestions glossed over the realities for families that have babies that are not "feeders and growers" whose stay extends well past ten days into weeks and months with long term implications. The information and support that you require and are practical for 10 days are very different to a long term stay. What I found exceptionally difficult was that NO mention of some of the more serious sides of prematurity eg: viability, morbidity, resuscitation, IVH, or long term health implications. Why are these issues forgotten about? Why is it not important to support families with information on these topics that are difficult but so important when faced with these issues? If you were going to give suggestions to support parents of premature babies these issues need to be and should be discussed.
5 comments:
Honestly, I've found most premmie parents just want to put their head in the sand. They don't want to know about the long term implications. Neither does the general public, cause it might make them feel uncomfortable instead of believing that medical science has progressed so far for these "miracles". I could write a book on this subject ;)
Thanks for understanding Jacqui. I think I'm a little jaded by it all sometimes.
My personal favourite was Sunrise doing a feature on prematurity for premmie day and talking about the long term implications - being asthma. Good grief! While I don't want to belittle people who suffer from asthma as I know it can be really serious, anyone who watched the piece would have thought that it was the worst thing that could have happened.
Like I said, I could write a book on this and if you let me, I will.
I feel the same way. Last year, when Hallie was still on the vent and there were around ten other 23-25 weekers in the ICN, the social worker at the unit started a preemie parent support group. They got a very well meaning but utterly clueless mom of a 30-32 weeker in to hold it. I know that this mom, whose child was in the ICN for several weeks, was very well meaning and am sure that her preemie had her own issues. But the kid was a feeder grower who spent a bit of time on a whif of O2. Most certainly, the mom wasn't dealing with the near death experiences of IVHs, oscillating ventilators, MRSA, or the long haul that these parents had in the unit (the average stay was over 100 days for all of us, and those were for the ones that survived; several of the wee babies did not make it).
Anyway, my suggestion to the unit was that they have a micropreemie support group. The issues are just so different and this population (myself included) could really have used the support.
Littlema i totally understand your frustration. My son was born at 27 weeks and spent 110 days (3.5mths) in hospital. He was ventilated for 5 weeks, CPAP for 7 weeks, low flow for 2.5 weeks.
I have to say that overtime i have learnt to just shrug off people who think it is hard after their baby has been in hospital for a few weeks, otherwise i would get very upset and frustrated.
In a way it is their own unique personal experience so to them it IS a big deal but i don't think they should give survival tips on NICU life, they would have NO idea!
Julia
www.lilaussieprems.com.au
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