I've been very busy adding a new pantry to my kitchen and painting my bedroom but this has not been far from my mind.
A recent discussion was started at The Preemie Experiment that has me, and other preemie blog moms, outraged.
No, the discussion is not about resuscitation of extremely preterm infants. No, the discussion is not about comfort care for said infants.
The discussion was about the value of a preemie.
The conversation started like this:
"And those of us who are thankful for our children and blog about them don't pretend everything is fine. Some people, including me, believe the fact that our children are alive is a miracle. I personally think all children are miracles but that's another story. We don't sugar coat our lives Terri. We blog about our every day struggles, joys, and affects that these children have on our lives. Just because we're not unhappy they are alive does not mean that our blogs claim all in the prematurity world is miraculous. Why do you see everything as black or white? We write about projectile vomit (some even post pictures), we write about numerous doctors appointments, physical therapy, CP diagnosis, PVL, oxygen needs, g-tubes, oral aversion, SPD dx, the list goes on and on. Sometimes we are frustrated, depressed, and extremely sleep deprived, and we need to vent and get support from those who know what we're going through. Sometimes we are posts are filled with joy when our children reach another milestone. We bounce ideas off one another so that we can have more information when books and outsider's advice don't pertain to our kids. I don't what blogs you've been reading but the ones linked to this blog do not hide the realities of our lives. Some kids are in wheelchairs, pony walkers, and leg braces. Some kids have shunts and are currently in the hospital.
The difference is we celebrate their lives and for some reason that is insulting to some here."
"The preemie path isn't all doom and gloom. Its not as 'easy' as most full term paths (if any of it is really easy) but its not horrible either.
We preemie parents rejoice at sitting up more than full term moms. We rejoice at coming off the vent where full term moms don't even know what that is. We rejoice (as TPE has) when our child rides a bike, probably more than most full term ones. We rejoice when our child does good in school, probably even more so than most unaffected full term ones.
If anything I see the preemie path being MORE rejoiceful (dare I say, miraculous) than most paths of full term children.
Are we mad that they came early? eys! Are we mad that they suffer from being a preemie? yes! But that doesn't mean we can't rejoice in what they do manage to do and find joy in the little things - things full term parents can't understand.
Having that outlook is good - much better for our children too.
It's not all doom and gloom! Its only that way if you make it."
"Your comments are YOUR response NOT we preemie parents. I am a mom to a moderately impacted 25 weeker and I communicate daily withother moms of micros born in the same 2-3 span as my son. I can tell you that you DONT speak for any of them. Please refrain from acting as though your superior "mothering" of a preemie speaks for all as it really doesnt and just perpetuates the martyr image which makes me ill.
Rejoice my ass. My son didnt deserve to be born early and there was/is nothing miraculous about his birth. Pain, suffering yes but miraculous? No."
"Yes, the fact that our children are alive is a miracle. Rejoicing in what they can accomplish is so much better for your children. Yes, its tragic that they came early and suffer life long for it (my son (a 26 weeker surviving twin) will never be like his friends - he's deaf and has SPD), but we celebrate the things he accomplishes because they really are so big for him!
Do we use such phrases as:"Rejoice my ass. My son didnt deserve to be born early and there was/is nothing miraculous about his birth." around him or to describe any aspect of him? Heck no!
His birth was tragic and there is no rejoicing in that, but his life is miraculous - everything he does is a miracle, moreso because of his tragic birth! Being a preemie doesn't change the fact that, to us, he's a miracle. The day the tube comes out and he eats on his own will be a miracle we will definitely rejoice in, just like so much he does.
That's the difference myself and 23wktwins'mommy are talking about - while there birth is horrible and not something to be really celebrated, their life is - no matter how affected.
Harboring such negativity about situations one can't control is not good for anyone or the child.
Am I saying be unrealistically happy and forget about all the research and statistics and all that? No! But at the same time it shouldn't cloud your overall view... I get the feeling, especially from 'terri w/2' that that is the case.
Prematurity is a tragedy but it doesn't have to the negative focus many here make it. There are many who agree with 23wk and me - but they don't post here anymore because of the negativity. You don't see too many of the active preemie mom bloggers posting here anymore do you? No, because they are trying to be as optimistic about their children as they can while keeping the 'research' in the back of their head. As a matter of fact I almost learn more about prematurity from reading Holland and Eden's blog than this one...
Someone has cancer and will die - does living out their last days in anger make it any better? My aunt died of stomach cancer 2 years ago (which for anyone knowing about it, once its found you usually have a few weeks)but spent her remaining months very optimistic and as happy as she could muster - her doctors believed it helped her live much longer... and I believe there is research to back that up.
I truly believe that doing this rejoicing is better for our son. My son will never be like his peers and may never live on his own but I accept that and find joy where I can.
We are pregnant and already have a DNR for prior to 26 weeks (if the hospital acknowledges it is another issue), yet our son was born at 26 weeks - this doesn't mean we love our son less because of his gestation but we are aware of the risks and accept them now."
"Your reality is not everyones. What I mean is how you feel/cope etc works for YOU. To imply that others should do what you do is what bothers me. I dont love my son any less than you love yours. The difference is that I have a different belief than you. This doesnt make you right and me wrong, nor vice versa. Im glad you have found what works for YOU.
I find it VERY insulting that those that disagree with you are some how wrong.
To you it is a miracle your son is alive. To me it is modern medicine which is NOT miraculous. I can agree to disagree without insulting you. Can you do the same?
On the note of many bloggers not posting here any longer I have a different take. Most of the crop of bloggers kids are <3>
Most of the preemie blogs I read, the parents all think "they" are the exception. One day this will all be a memory and their kids wont be impacted. Hard to keep thinking that when helen and others show you those darn bothersome statistics.
I also agree with C&V when she said that alot of times we as parents, caregivers etc assign value, etc to our kids lives because it makes US feel better. (This was not her exact phrase but what i got from it. If I misinterpreted I am sorry Chris)"
"Are you for real? Do you really think that a preemie mom who blogs about how much they love their child or how fantastic they are are living in some dream world?
So a preemie mom writing about how much she loves her child with CP, deaf, feeding disorder, and enjoys every moment she has with her child is doing so out of denial?
So I guess a life of disability is not worth living?
Wow... it's not possible to find joy in a disabled child huh?
If I were you I'd think before you post and insult so many of the preemie moms here."
Anyone who has spent any amount of time reading some of my preemie related posts here knows that I can not judge a parent who has chosen to resuscitate their child (I did), and can not judge a parent who has chosen comfort care (I will if a child we have is born prior to 26 weeks) - I wouldn't even know where to try as its such a unique/personal decision.
My daughter was born at 28 weeks - she was intubated for 18 hours. If she had not been she may have died. I did not have a choice in the matter and that was fine by me as I was convinced,and still am, that everything would be fine and it was the correct decision.
I love my daughter, more than ANYTHING in this world - she is my world. I do not regret, for a moment any of the decisions made in the NICU during her 6 week stay there (despite the lack of privacy and breastfeeding support). The hospital she was at was fantastic and they did right by my family.
My decision to resuscitate a micro preemie has not changed either. I never had an opinion on it because I never imagined it would be a decision I would have to make but I am sure that prior to 26 weeks I will need very convincing evidence that my child is behaving as a more mature premature infant (oxymoron huh?) to agree to artificial prolongation of its life. This is mainly due to neurological issues that can arise. Can those arise at any gestation? Yes... but the probability of those issue occurring increase at lesser gestation and its not something we are comfortable with.
This does not mean that I think that families who chose a route we would not are wrong! Let me repeat that. This does not mean that I think that families who chose a route we would not are wrong!
The comments I am posting about above are slightly different, even though they originated from the discussion about resuscitation. What infuriates me is this comment in particular:
"I also agree with C&V when she said that alot of times we as parents, caregivers etc assign value, etc to our kids lives because it makes US feel better."
I feel horrible that I was not able to carry my daughter to term - this is a guilt that is very hard to get rid of. What if I had gone to the hospital sooner? What if I had done this? What if I had insisted on that? A million different scenario's run through your head but in the end it doesn't change anything - it is what it is and you have to move on.
The process of moving on, for many preemie moms, is starting a blog, like I have and talking about our children and sharing all the joy and sorrow that goes with it. I don't lie - life with Arianna has been hard. She's failure to thrive and has gross motor delay and her premature birth has had very real emotional/financial impact. I read alot of other preemie mom blogs whose children have a variety of issues and NEVER once did I read a blog and think - this mom is in denial that her child has some serious issues. Never once.
There is no lack of evidence/studies/statistics out there to tell preemie parents that their child will not be 'normal'. They didn't have these studies when I was an infant - my parents did have a clue what they were up against when I was born at barely 30 weeks (I was only 1 oz. larger than my daughter at birth). Retinopathy of Prematurity? What's that? My husband has a friend who is exactly one year older than me (we share a birthday) who is blind from ROP/extended vent time. My parents didn't have a clue what that even was when I talked to them about it today (as we were painting my bedroom, none the less) - my mom didn't even hold me until I was a month old and I spent 8 weeks on a ventilator. I was 13 lbs. at a year old and didn't walk until I was 19 months.
I'm not blind and although I was cross eyed as a child (which my friend Kate's full term daughter is having surgery on next week) I wore glasses. I graduated in the top half of my high school class and have a math centered degree in computer programming. I'm articulate and pretty darn bright. I'm married to a great man, we own our home and have a beautiful daughter.
Many of the troubles I had growing up were equally shared by my full term peers.
I'm a preemie statisticians worst nightmare. I'm Helen Harrison's worst nightmare - I'm a preemie that turned out great! Look at me everyone!! I'm a functioning, excelling member of society!
“A child’s outcome is directly linked to their parents and their environment.”
But I'm also not ignorant to the fact that many premature infants don't share my fate - many are suffering and many families are torn. Some of those families even tried to stop the suffering but ran into road blocks or didn't fully know the extent of the problems until they didn't have a chance to put an end to it.
My daughter is only 19 months old - do I know what the future holds for her? No. But I do know she's doing better than me! She has no eye turn yet (I had a severe one at a year old), she was 17 lbs. at a year old and walked at 17 months. Thats pretty darn good. I can only hope that she does as well as I did growing up - and that we do as good, if not better, a job than my parents do (which on many days is very questionable). If at some point she becomes disabled or afflicted in some way will my love for her change? Will her VALUE to me change? No - and to the commenter's on Stacy's blog who insinuated that was the case for them, I'm so very sorry for your children because they deserve someone who values them despite their disabilities.
So when I blog about how great my daughter is doing at any one given task or on any one given day, or when I talk about how much I love her I am not ignoring the fact that she may have many problems as she gets older. I'm not living in a dream world and fully understand the risks she faces.
I think this is an issue many parents of preemies from my generation have issue with because the medicines/practice used on their infant had very dire consequences that were unknown at the time - such is the game you play in medicine, with anything: cancer, prematurity, epilepsy - you name it! Does that make it right? No! But that is a risk you take as a HUMAN BEING. Just being a part of this world requires risk... medicine is one of them. Not comfortable with the risk? Don't partake. Not comfortable with the possibility of having a child with a disorder/disability? Don't have kids!
I feel sorry for the parents of older preemies who feel it is their duty to shove their outcome down the throat of a 'new' preemie parents - share, yes; shove, no!
I really enjoyed reading Stacy's blog but her "community of people dedicated to the open discussion of the long term effects of prematurity" is toxic (to borrow 23wktwinsmommy's analogy - great one by the way!). There are no advantages to being born prematurely but there are many outcomes, equally ignored, that are good. I never even hear about them in the media - you only hear about them in the hospital. How about a follow up? So if there isn't a follow up it has to be ignored?
Being born at 26 weeks is not a horrible existance as several of the commenters on Stacy's blog say it is. The inscidence of prematurity related disabilities are still dwarfed by genetic disabilities that can also affect children. Do you ever hear about spina bifida parents screaming at you to NOT save a SB child? How about Down Syndrome? If anything I hear DS parents talk about how wonderful having a DS child can be - is it easy? NO! Is it heartbreaking? YES! Is it worth it? YES!
Now that I accept that Stacy's blog is nothing but a huge void of negatvity it holds no VALUE for me and I won't contribute to that type of community. Its a shame as I feel I was a good addition to her blog as an adult preemie and since so many had already abandoned it due to its 'tone'. If she was looking to build a community there she should make sure that people a) feel welcomed b) feel its balanced with more truth from a variety of sources (not just the 3 or 4 'dark clouds of doom'). More often than not I read Stacy's blog and get depressed for the commenters there because I have to read about the older preemie moms talking about how much they hate their lives. They say they love their children but talk about how much life with them sucks.
That's so sad for them. My parents loved parenting me and my brother, we have alot of fun together. My uncle in Texas loves parenting my 26 weeker triplet cousins (all of which he just sent off to college) and there are many preemie parents who would say the same - I just wish more was done on her blog to seek out what they have to say. Their long term affects of prematurity are just as valued and a voice needs to be given to them too.
I'm sure parents of children with specific genetic disabilities talk about how hard their lives are, but I'm quite sure they don't breed a 'community' that makes newcomers feel like their decision to give birth to a child with a disability was the wrong one.
I realize thats not the intent of Stacy's blog and I hope that people who realize this know what they are getting into if they get involved in that 'community'.
And no, I don't feel guilty for bringing that blog post to the attention of the preemie blog community - more of them need to be aware of the intolerance being spread, and especially the lack of trying to stop it.
There will be no comments allowed on this post. If you would like to talk to me about it please email me: mai_lin@hotmail.com
