Guest guest Posted October 14, 2009 Report Share Posted October 14, 2009 I wanted to write a post about something that I hear in many posted messages, and it is something that I definitely experience myself on occasion... plagio rage. As I hear many of you saying, you want the best for your child and you do all you can to give them the best opportunities in life. So of course it is upsetting when you look over the top of your baby's head one day and see flattening. I remember that moment acutely - I remember thinking 'Oh my gosh, I've heard of this. We weren't diligent enough parents. Not enough tummy time.' Etc. Since then, I have sometimes felt feelings of guilt but I also would be lying if I didn't acknowledge that I feel angry as well. I have read some posts where people express anger at the pediatrician. Mostly though my anger is directed at the Back to Sleep Campaign. Of course, I know that this campaign has saved lives, so I feel bad feeling anger toward them. And maybe when the campaign was designed they had no way of knowing what the consequences would be for some babies. But now there is plenty of evidence out there to show the negative side effects of the campaign, and in my opinion there is not enough being done to make modifications to the recommendations they put forward. I did sign the petition that was circulated about this, and it felt good to do that, but I still feel angry. It seems what they've done so far amounts to creating a slogan in hopes of remedying the problem: " Back to sleep, tummy to play. " But many babies have positional deformities by the time they are 6 weeks old. 6 week old babies do not play much and they sleep the majority of the day. So 'tummy to play' at this age is not going to be enough to off-set the great number of hours that babies spend sleeping 'on their backs' as the campaign recommends. I wish the campaign would modify their message to one of moderation.. that babies position should be changed frequently and they should not spend too much time in ANY one position - including their backs. I wish they would do research and release research-based guidelines about the maximum number of hours a day that babies can safely be placed on their backs. Etc. These are just a few ideas.. but honestly anything would be better than the silence we have gotten from them so far. I feel like positional deformities are not taken seriously because the benefits of the campaign have been 'life saving'. But in my opinion there are ways to save lives without creating new problems. As we all know, the problems they have created are not just cosmetic. There can be clear medical difficulties associated with positional deformities (eg., jaw issues, etc.). But also, the emotional distress of parents should not be minimized. I am sure many of us have spend hours upon hours feeling anxious and hyper-vigilant about our babies heads, and would do anything to have spent that time simply enjoying our babies. Heck, this has even at times put a strain on my marriage, when I hound my husband over and over to remember to keep her off her head, etc. Anyway, sorry for the rant. But I thought it might help to share the fact that none of us is alone in our frustration and anger - wherever it gets directed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2009 Report Share Posted October 16, 2009 This is an interesting discussion. For us, the positional deformity was present and very significant by 7 weeks. Interestingly, my son was a great sleeper for the first four weeks and then he stopped napping in his crib altogether during the day from 5 weeks till about 14 weeks. Early on, we thought that was due to colic but at about 14 weeks, he was diagnosed with reflux. Between 5 and 14 weeks, he only napped if I was holding him -- so very little time on his back, except to sleep at night. And he still ended up with moderate/severe plagio. We were always a bit reluctant to reposition him throughout the night because he hardly slept throughout the day and we didn't want to mess up the only sleep he was getting. Often, if we interrupted his nighttime sleep with the repositioning, he would then end up having a terrible night, too. It always felt like a catch-22. I definitely would have appreciated being educated early on about the risk of plagio with BTS, and would have given anything had someone mentioned something - anything - about torticollis. My son was in the NICU for a week and my husband noticed on day 2 that he seemed to always slept on his right cheek. He was monitored 24/7 for a week and none of the medical team working with him ever noticed or mentioned that he was always in the same position. And the pediatrician never asked any questions about him favoring one side or the other at those first check-ups. This is our first child and we'd never heard of torticolis and didn't know it was a problem until it was too late (which was at 7 weeks). Well - we know now. And we're sharing it with all the new parents we know. Perhaps if we all do that, at some point in the near future, it will make a difference. Jill Cade's mom (DOC Band #2, 9/29/09) Texas > > > > > > > > > > > > From: nrob1230 <robbins1230@> > > > > Subject: Plagio Rage > > > > Plagiocephaly > > > <mailto:Plagiocephaly%40> > > > > Date: Wednesday, October 14, 2009, 12:59 PM > > > > > > > > > > > > > > > > > > > > > > > > > > > > I wanted to write a post about something that I hear in many posted > > > messages, and it is something that I definitely experience myself on > > > occasion... plagio rage. As I hear many of you saying, you want the > > > best for your child and you do all you can to give them the best > > > opportunities in life. So of course it is upsetting when you look over > > > the top of your baby's head one day and see flattening. I remember > > > that moment acutely - I remember thinking 'Oh my gosh, I've heard of > > > this. We weren't diligent enough parents. Not enough tummy time.' Etc. > > > > > > > > Since then, I have sometimes felt feelings of guilt but I also would > > > be lying if I didn't acknowledge that I feel angry as well. I have > > > read some posts where people express anger at the pediatrician. Mostly > > > though my anger is directed at the Back to Sleep Campaign. > > > > > > > > Of course, I know that this campaign has saved lives, so I feel bad > > > feeling anger toward them. And maybe when the campaign was designed > > > they had no way of knowing what the consequences would be for some > > > babies. But now there is plenty of evidence out there to show the > > > negative side effects of the campaign, and in my opinion there is not > > > enough being done to make modifications to the recommendations they > > > put forward. > > > > > > > > I did sign the petition that was circulated about this, and it felt > > > good to do that, but I still feel angry. It seems what they've done so > > > far amounts to creating a slogan in hopes of remedying the problem: > > > " Back to sleep, tummy to play. " But many babies have positional > > > deformities by the time they are 6 weeks old. 6 week old babies do not > > > play much and they sleep the majority of the day. So 'tummy to play' > > > at this age is not going to be enough to off-set the great number of > > > hours that babies spend sleeping 'on their backs' as the campaign > > > recommends. > > > > > > > > I wish the campaign would modify their message to one of > > > moderation.. that babies position should be changed frequently and > > > they should not spend too much time in ANY one position - including > > > their backs. I wish they would do research and release research-based > > > guidelines about the maximum number of hours a day that babies can > > > safely be placed on their backs. Etc. These are just a few ideas.. but > > > honestly anything would be better than the silence we have gotten from > > > them so far. > > > > > > > > I feel like positional deformities are not taken seriously because > > > the benefits of the campaign have been 'life saving'. But in my > > > opinion there are ways to save lives without creating new problems. As > > > we all know, the problems they have created are not just cosmetic. > > > There can be clear medical difficulties associated with positional > > > deformities (eg., jaw issues, etc.). But also, the emotional distress > > > of parents should not be minimized. I am sure many of us have spend > > > hours upon hours feeling anxious and hyper-vigilant about our babies > > > heads, and would do anything to have spent that time simply enjoying > > > our babies. Heck, this has even at times put a strain on my marriage, > > > when I hound my husband over and over to remember to keep her off her > > > head, etc. > > > > > > > > Anyway, sorry for the rant. But I thought it might help to share the > > > fact that none of us is alone in our frustration and anger - wherever > > > it gets directed. > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2009 Report Share Posted October 20, 2009 , Thank you soo much for sharing. This whole thing can be crazy-making at times and it helps so much to know that others have had similar feelings as I have. It is a huge comfort for sure! Best wishes, Natashia > > > > > > > > > From: nrob1230 <robbins1230@> > > > Subject: Plagio Rage > > > Plagiocephaly > > > Date: Wednesday, October 14, 2009, 12:59 PM > > > > > > > > > > > > > > > > > > > > > I wanted to write a post about something that I hear in many posted messages, and it is something that I definitely experience myself on occasion... plagio rage. As I hear many of you saying, you want the best for your child and you do all you can to give them the best opportunities in life. So of course it is upsetting when you look over the top of your baby's head one day and see flattening. I remember that moment acutely - I remember thinking 'Oh my gosh, I've heard of this. We weren't diligent enough parents. Not enough tummy time.' Etc. > > > > > > Since then, I have sometimes felt feelings of guilt but I also would be lying if I didn't acknowledge that I feel angry as well. I have read some posts where people express anger at the pediatrician. Mostly though my anger is directed at the Back to Sleep Campaign. > > > > > > Of course, I know that this campaign has saved lives, so I feel bad feeling anger toward them. And maybe when the campaign was designed they had no way of knowing what the consequences would be for some babies. But now there is plenty of evidence out there to show the negative side effects of the campaign, and in my opinion there is not enough being done to make modifications to the recommendations they put forward. > > > > > > I did sign the petition that was circulated about this, and it felt good to do that, but I still feel angry. It seems what they've done so far amounts to creating a slogan in hopes of remedying the problem: " Back to sleep, tummy to play. " But many babies have positional deformities by the time they are 6 weeks old. 6 week old babies do not play much and they sleep the majority of the day. So 'tummy to play' at this age is not going to be enough to off-set the great number of hours that babies spend sleeping 'on their backs' as the campaign recommends. > > > > > > I wish the campaign would modify their message to one of moderation.. that babies position should be changed frequently and they should not spend too much time in ANY one position - including their backs. I wish they would do research and release research-based guidelines about the maximum number of hours a day that babies can safely be placed on their backs. Etc. These are just a few ideas.. but honestly anything would be better than the silence we have gotten from them so far. > > > > > > I feel like positional deformities are not taken seriously because the benefits of the campaign have been 'life saving'. But in my opinion there are ways to save lives without creating new problems. As we all know, the problems they have created are not just cosmetic. There can be clear medical difficulties associated with positional deformities (eg., jaw issues, etc.). But also, the emotional distress of parents should not be minimized. I am sure many of us have spend hours upon hours feeling anxious and hyper-vigilant about our babies heads, and would do anything to have spent that time simply enjoying our babies. Heck, this has even at times put a strain on my marriage, when I hound my husband over and over to remember to keep her off her head, etc. > > > > > > Anyway, sorry for the rant. But I thought it might help to share the fact that none of us is alone in our frustration and anger - wherever it gets directed. > > > > > > Quote Link to comment Share on other sites More sharing options...
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