The journalist reporting on the story of the 21 weeker is either misinformed, receiving bad information or not understanding the information s/he is receiving to imply that the child will come away from the whole thing unscathed.
I have been reading more preemie stories here and here, here and here. I am inspired by the mom’s in each of these blogs as well as by Jacqui. It’s good to see how other parents are confronting the issues we face. I learn a lot from each of them and take courage in their tenacity and humor in the face of the unknown.
I have also been reading neonatologist’s blogs here, here, and here. I am glad to be aware of them. But after a few days of taking in all this new information in this new vista of the blogosphere I have discovered I am quite full. Full as in you have just spent a couple of hours in la Louvre and need to lie down. Too. Much. Information. Must. Shut. Down. Now. System. Overload.
Here is my question to my vast readership of 10: Is it bad to know too much? Is it good to follow these debates and be so informed, especially since I can’t change the past and am committed to the path we are on? Is it? I would love to hear your opinion on that.
But – gaaaawwwwddd. Reading these discussions scares the crap out of me. And for the record, I think doctors and the press could do a heck of a lot better job at painting a true and detailed picture of sequalea of hypoxic-ischemic encephalopathy and of prematurity. But once you are where we are, four years plus in, is it really good to know so much?
I am blogging about this however because there are some major problems when it comes to prematurity.
#1 is the myth that preemies mostly do ok and actually have gifts like being extra musical, extra smart, extra wise. We heard all of that crap in the NICU. I have never found any study to bear any of these out. I have mostly seen many preemies with mild to severe issues especially cerebral palsy. Other supporting myths for the greatness of the preemie experience are examples of famous preemies like Albert Einstein. I have no idea if that is true but if it is he is a very rare case and he most likely had
Asperger’s Syndrome.
#2 Because of #1. preemies and parents who do not have good outcomes are certainly not spotlighted as much in the media or even thought of as important voices in hospital systems and their parent support groups as are the parents of preemies who did great in their NICU course and then go on to "catch up". Why are we so unrealistic about preemies? Maybe it’s human nature to want to focus on the positive examples and ignore, deny, shunt away a reality that is not so positive. Maybe insurance would not just give NICU's the green light when it comes to their tiny patients of the statistics were better known?
#3 Because of #2 many parents of preemies don’t get the support they need from their communities. When Ellie was born I can’t count the number of people reassured me all would be well because they knew of an adult preemie who turned out just fine. They did not mean this is in a "so what is your problem way?" but it did give me a lot of unrealistic expectations followed by guilt over the fact that things were clearly not just fine. Also, the head job #2 does on the parents can be debilitating in terms of them facing up to the reality of their child's issues and even feeling like they can ask for and do deserve help.
There it is. How does sadness and fear of the future and the current fatigue (the GSTTN have been kicking my ass this week) help me get through the day? Not at all.
Enter positive thinking 101 survival technique. An acquaintance of mine just posted an entry on another blog we both contribute to about his happy life and mental discipline of replacing any and all negative thoughts with positive ones, for example something he is grateful for. This in theory and in practice is an awesome thing to do. I’ve known him for a long time and he always exudes this sense of self that is both uplifting and rock solid. Discipline is the only ways to achieve that as this world is designed to separate the individual from such things.
Here is my grateful and positive thought that I am going to use to remind myself in the face of my deepest fears regarding our life and Ellie’s future:
I love these two lovely and amazing people that love me back every day unconditionally. That’s alotta love going on. It’s pretty cool and something I never had before on a daily basis. On top of that they are both really cute and funny and sweet and even think I am great. Life before them, though it looked pretty successful from the outside (education, job, career, health) was in actuality pretty lonely on the inside.And this is not a rationalization. For the few friends of mine that read Ryn Tales and know my background and travails growing up it will make the most sense.
I hope this post offers some resources to understand the true outcomes of prematurity. I also hope that anyone reading this will understand, that having a preemie who then becomes a child with multiple disabilities is not the end of the world. It is entering into a new one with new challenges and many things to learn. That is the, please don't feel sorry for us part. And though I would not wish the experience on anyone, you could do it too if you had to. Finding that you have that kind of inner strength is pretty incredible.
20 comments:
Just for the record, I'm not a neonatologist. I am a general pediatric hospitalist in a neonatology department and run several level 1 and 2 nurseries. The most premature infant that can stay at the level 2 nurseries is 30 weeks and that is if they are doing pretty darn well i.e. no need for CPAP or the vent. But I do spend a decent amount of time caring for former micropremies that have graduated from the level III nursery or are admitted to our hospital from the outside world to my service. Thanks for the mention though.
This is such a great post! Well said and I totally know what your saying.
I could never go back to the life I had before Moo. And that is what I hope comes accross in my blog.
Also, I know what you mean about a head spin from the other posts. Sorry for doing that to you but I'm glad you are with me as I feel on some of the sites it is safety in numbers.
L,
Jacqui
Jacqui- you are so my cosmic twin! ;-) I am glad to be there right with you. And glad you shared Clark's site with me and the pandora's box right with it. It's a good discussion...tiring as it may be.
L,
Kathryn
Clark - thanks for the clarification. I now have to get to reading the rest of your overwhelmingly prolific site. ;-)
Kathryn
I agree that there is the possability of too much, all at once.
But however that information comes (in large overdoses or spurts), the outcome is the same - you have to process the information and learn from it.
When our preemie first came home I didn't do alot of reading. It wasn't until I started researching reflux in preemies (when ours was about 3 months adjusted) that I came across a wealth of very scary information.
I was overwhelmed and scared but I kept reading (like an addict). Some called me a bad parent who was constantly looking for something wrong with my child.
But I am not sorry for the information because now I am aware and if any of the 'bad' things do show up (autism, OCD etc.) I will know to quickly get help instead of 'hoping they go away'.
Its not easy being a preemie parent and I hate to use this analogy but I have seen many grow up to be perfectly functional, contributing parts of society (even sub 30 weekers).
Great blog, I'll enjoy reading more!
You wrote: "But once you are where we are, four years plus in, is it really good to know so much? "
Hi Kathryn,
I think it all depends on where you are in your journey and where your path is taking you.
When Paige was born I was fed the line of crap that she would be normal (by the neo that treated her). She is not. I saw all of the news stories about miracle preemies. Mine was not. After about a year I started to feel like, "why am I the only one who doesn't have a normal preemie? *I* must be doing something wrong."
After joining an on line group (there weren't many 8 years ago), I was shocked to see that I was not alone.
The path on my journey began to go in a different direction that very day. I knew I couldn't change the way I was treated, but I could educate anyone and everyone that preemies are not just small full term babies.
I really want to see a day that no parent is told that their preemie will be 100% normal. I never want another parent to feel the way that I did.
Then, as Paige got older, I saw all of the same issues we were dealing with, in other older preemies. I started to research and dove into the world of "what is causing these issues?" Again, I know I can't change my daughter, but I feel the need to help future preemies.
Since neonatologists base their use of current technology and medicines on past experience and outcomes, it because imperative that I needed to let them know what was going on with older preemies. (they usually only follow research that is based on babies followed through age 2)
I am not alone in my crusade and I am not the first to start the movement. Helen Harrison is the true pioneer. But, thanks to blogging, more people are hearing our voices.
So, even if your path and my path are not the same, our journey is. We love our children and will do whatever it takes to make them comfortable and happy.
Thanks for the link. I've also linked you on my site.
Hugs,
Stacy
I found your site via a link from The Preemie Experiment. Your daughter is lovely and I appreciate your willingness to share so openly about both the joys and struggles of raising a child with multiple disabilities. You speak well to the dichotomy that naturally arises from such a unique and challenging parenting experience. You love your daughter beyond measure, but there is also the reality that life is challenging for her and in turn more challenging for you. I also understand your point that "you could do it too if you had to." I too have learned the hard way that we all have the capacity to overcome all sorts of adversity.
In answer to your question on this particular post, I can say personally that the answer is a resounding "YES!!" Yes, there definitely can come a time when all of the information, debate and discussion can become too much! Especially when, as you say, your choices have been made and the course of your life has been determined. I can really relate to that, though in a different way. Our 23 week old twins both died shortly after birth, and as much as I wish otherwise nothing can change that now. We were not really given the option of resuscitation (long story) and were essentially told that survival was virtually not possible. We held and loved our babies as they died, believing it was the only thing we could do for them. So you can imagine how difficult all of the discussions surrounding survival rates and decisions to "save" micropreemies are for me. Nevertheless, I can't help but chime in from time to time because I feel like most of the time voices like mine are missing.
Anyway.... I appreciate your blog and wish you and your family a bright future! Take a break from the blog world now and then!! I considered giving up my computer for Lent... but I just don't think I can do it....
Hi everyone,
Thanks for sharing your stories and heartfelt thoughts. It's true -at the end of the day we do need to know what the heck it is we are dealing with. When we had Ellie - we dove in too. We bought neotalogy medical texts, neuro texts and scanned the internet and quizzed doctors, parents, nurses alike. I have written in some posts about our ask three people the same question rule and other heuristics we developed in order to navigate the complex world we are now in.
We were also accused by some of trying to be doctors - that was fun. We were often mistaken for doctors by doctors when they would speak to us and we would just say, "ah, no we are just informed parents."
But it's also true that we are in this for the long run. And like a long run if you sprint too much you lose your wind and need to stop. Pacing when you can is good but often Ellie has other ideas and she is the leader.
I agree more parents need to be aware that prematurity is not this glamorous thing even though there is that aura that surrounds you and it. Ellie was in the NICU for 133 days and through that entire experience I just wanted to get her home because I thought once we are home we can get on with our story as a family and everyone will heal.
As you all know, that is sooo not the case. I wish there would have been people to coach me on what I would actually be facing and proactively set me up with services. I did get the distinct sense that when Ellie hit a certain weight they were dying to get her out of the NICU when in fact she sustained more brain damage due to that premature release. Was it the insurance that was starting to balk so they decided to get her home? I am really cynical about all that as you can tell.
The whole services game warrents a post of its own.
It is good to discuss this with all of you.
Lori - I had to laugh out loud when you mentioned Lent because just this morning as I was marking down Ellie's therapy notes on our big calendar I saw it was the beginning of Lent and I thought, maybe I should give the blogging, take a break. I then immediately thought, no way better to give up chocolate.
I think this will not be a very successsful Lent...;-)
Hugs to all,
Kathryn
Hi Kathryn,
Great post! I am mulling over a post about the story of Evan, a baby born with a brain tumor. Very hard subject for me, but one I need to write about. I will send you a link once I have finished my blog. Great picture of Dave and Ellie - keep up the good work. My daughter had no chance for a cure - I admire you so much for all that you do for Ellie.
Love,
Maureen
I appreciate your posts and sharing your thoughts and feelings. While my son was not a preemie, I still can relate to having a special needs child. I'm often asked the question, "How early was he?", or "When did you find out...?". People often assume that because he has special needs he was a preemie. I often scour the internet for information on my childs condition. For me, it helps me come to terms with the situation, thus the addiction to blogging. When the day is over, what really matters is the joy and love I feel from my son. This is an incredible journey... life changing. Throughout this experience, we've witnessed many miracles but the greatest miracle is what has happened to our hearts. I'm sure you understand what I am trying to say. The picture you included speaks a million words. Your daughter is beautiful. Thanks for sharing!
Kathryn,
Sorry, sugar, I'm not a neonatologist either. I'm a generalist. But thanks for the compliment!
best,
Flea
Recently, a columnist in The Guardian newspaper expressed his disdain for public discourse on the internet. He likened posters and commentators on blogs and other places to people who wrote letters to the Editor in green ink – eccentrics and obsessives. I don’t agree with him, regard this as a somewhat Luddite view, but as I have moved from link to link following this discussion on prematurity and disability I am beginning to wonder if perhaps he has a point, as I do not seem able to resist joining in. This is the first post of yours I have read and it chimes very much with one of the things that concerned me. Reading the posts and the comments on Tales from the Womb, Neonatal Doc and Unintelligent Design has been for me interesting and disturbing – disturbing in a way I have found very hard to pin down. The main thought that ran through my head was that if I had read this when my daughter was younger I would have found it very frightening and depressing. Musing on the “glass half full” analogy, I decided that I was by nature positive and optimistic – and very glad of it. I am not sure that one can replace every negative thought with a positive one, but it comes naturally to me to think that if you can’t change the situation, you can change the way you look at it. Anyway, after a couple of weeks immersed in this discussion of negative outcomes and dire predictions, it is a relief to be reminded that there are other mothers out there who are just getting on with loving and hoping. Quite a few aspects of this discussion bothered me. For one thing, I couldn’t pin down whether there is a real difference between attitudes in America and England. I could dimly understand the hostility to the “miracle baby” stories, but had no idea it was such an issue. Now I sort of understand that this is a core complaint, and can see why – I think. For me, one of the most tiresome and radical effects of having a child who is “different” is the way that you are immediately separated from the world of “normal”, and slotted into a different universe. To some extent it is a different place, this semi-secret society of mothers who know what it is like – but it is not a bad place. It has something that the able bodied world should envy, not fear – solidarity and humour and support and depth of feeling about what really matters, generally, an instant cameraderie. But finding that world does not mean that you can no longer inhabit the mainstream. I am aware, have always been aware, that I do not fit the stereotype of the Carer. I am not a saint, nor am I a downtrodden, exhausted martyr. I am just like everybody else – and that is how I am treated, until the time when I choose to mention my brain damaged daughter, and watch with detached interest the panic or pity that comes next. An absolutely guaranteed conversation stopper, this. So attempts to counteract the “miracle baby” stories with tales of woe and hardship irritate me, as I feel they only reinforce this negative view and fear.
Your question was: Is it bad to know too much? Is it good to follow these debates and be so informed..? I don’t know the answer. Sometimes, I wish I had known more, done more. I think if the internet had been around when my daughter was little, it would have helped. As I have said, reading Helen Harrison definitely would not. Sometimes I wish I had been more agressive, seeking out better doctors, different therapies. Sometimes I think that chasing every therapy, every link is displacement activity that can lead to unrealistic expectations – but if it gets you through the day...and maybe there are miracles. One of the things that I am weirdly grateful for is that I was disqualified early from competitive mothering. My daughter is who she is and I love her.
Claire,
As I mentioned on another blog (I hear you about following this "debate" around!), I feel as though I am a bit of an outsider to this discussion which perhaps gives me a little distance. I just want to say again that I really do hear both sides of this discussion, and I do hear yours. I am not so sure that if I were in your position, I wouldn't feel largely the same way. I can speculate that because in a disconnected way, I am in your position. My lot in life has already been cast too. My babies have been dead for over 3 years, and so spending too much time looking back over what we should or shouldn't have done is not only fruitless but potentially painful. We have to live in our current reality to the best our ability. I do understand what you, and many other mothers are saying.
That said though, I also respect the sort of person who can decide that even though they won't benefit personally from future change or improvement, they want to fight to make it happen. I see that in mothers I know whose children have already died from various childhood diseases and conditions, and yet they fight passionately to prevent future losses. I really admire that. There are times I have a hard time feeling inspired to fight for the "cause" of prematurity, because in my heart the premature babies I cared the most about are already gone. I admit that is a selfish attitude, but it is honest.
I think what I see happening in some of these discussions, is a lack of grace. And I mean grace in the truest sense of the word. Both sides need to have the grace to say, I hear you and I respect the intentions behind what you are trying to say and do, even if I don't always agree.
I think there is the risk, when you spend many years working toward something, to lose perspective. I see it all the time even in the most altruistic professions. Pediatricians who don't even seem to like kids, obstetricians who dismiss every pregnant mother as nuts, teachers who complain about having to well... teach! You have to work hard to continue to fight for something so passionately, and yet remain compassionate toward the very people you are trying to help. That isn't always easy, but it is always necessary.
For what it's worth Claire... I hear you and I wish you peace.
Actually Lori, I agree with you - and I hear, and have heard you. I have a lot of respect for your contributions, and your different, and awful distress. I haven't enjoyed this debate - but I have learned something from it. I have never believed the "miracle baby" stories exactly - though I had hoped and believed that progress had been made since my day. I hadn't understood how extreme and uncertain some of the NICU procedures were, for a start. My own NICU experience was relatively benign (though mainly in hindsight, not at the time) - my period of high stress was carrying a child with a failing placenta and just hoping she would live long enough to get born. I do believe passionately that parents need sound information - but am dubious about where it is to be found, and how it is to be interpreted when most people are so afraid of the hardships that come with disabilities. Of course I believe that we all have the right to tell our stories in any way we want. The trouble is, what you say and what is heard don't always match. What is a young mother with a baby struggling for life, or a two year old who appears to be making some slow progress to do with tales of social isolation, mental illness, violent tantrums, broken marriages, chronic povery? These things can happen. These things can happen in any family, for all sorts of reasons. I DON'T believe in sugar coating grief or presenting pretty pictures - I am just not sure where the balance lies. Like you, I was in a position where decisions were taken for me - I might have been given a choice, but I wasn't. If I had been, I have no real idea what I would have done - I just suspect that fear and a failure of nerve might have played a part. I'm glad I was saved from having to face that, because I feel that your grief is as hard as the alternative, and needs every bit as much courage. No easy ways, and yes, we should respect each other, and do what we can. Part of my own dislike of stressing the negative comes from my own fears. My daughter, like Ryn’s, suffered for quite a while from devastating fits (Note to Ryn: they stopped when she was about 12, despite us being told they would get worse in adolescence). I lived in terror that some young doctor in the emergency room would decide to do us a favour by not trying too hard to keep her going. Quality of life is a lot harder to grasp than tales of hardship, and reinforcing the outsider view that our lives are terrible scares the hell out of me.
Stacy thanks for the hugs. I can appreciate how you felt. We felt like outcasts at times in the NICU. Others went home and we stayed. Others were eating, sitting, drinking, everythining faster than Ellie. It just speaks to the unrealistic picture that may be painted.
Though premature laborer is right as well - many do go home and have only mild issues.
Great to have you both in on this discussion.
Kathryn
Lori,
Your story breaks my heart. I hate it that you did not even get asked what you wanted to do even if what happened was what was supposed to.
It's great to have your voice here and in this discussion.
Kathryn
Mel - you have definitly captured the truth of it and the way your heart changes which is truly profound.
Kathryn
Claire and Lori you both said so much I agree with, relate too, and broke my heart at the same time.
I am glad your voices are hear and getting heard.
Hugs,
Kathryn
PS - that is great about the fits stopping at 12. I hope Ellie's stop too. Today they actually said her EEG was a bit better...
I don’t want to break anyone’s heart – and this is part of what bothers me about telling our stories – that what we say produces a different effect from that intended. Our “normal” is, sometimes, weird, and if I casually introduce into conversation something, say, like how administering rectal diazepam is so easy and so much better than having to call an ambulance, it sounds appalling to anyone who isn’t in the same boat, whereas to me it is a simple and not particularly stressful fact, part of my differently defined normal. Most of my daily life is abnormal, but it is my daily life, and I have developed strategies to deal with it and only occasionally give it much thought.
Also, I have a secret, and one that is very hard to put into words at all. I have two children. I love my second daughter the way a mother should. I think my relationship with her is completely normal – that is, at times I am bored, irritated, occasionally detached, but I love her. My secret is that I love my first, damaged daughter with a passion and an intensity and sometimes an anguish that is so powerful I cannot express it. I think this kind of love is very rare, and precious somehow. That’s my secret. I think your heart has the same feeling – and it won’t break.
Claire, Heart breaking is an expression I probably should not have used. What do you say when you want to give someone a hug. I can still empathize with you and that is different from sympathy which I really hate - hate when some one pities which is encompassed in sympathy for me. So I don't pity you or sympathize in that way. It's more understanding the bittersweet nature of life in this world and it's hardships.
And I understand about dealing with things each day that are so outside the norm but are normal for you.
I have heard other mothers say that they love all of their children but that their kid with the issues or the one that almost died affords them something deeper in the love category. I wondered about that too if we would have been able to have another if I would love Ellie differently. I think I would have.
And I do relate to what a lot of people were saying about wanting to still be heard when you are just sharing your life versus having people have some sort of emotional shut down on you because they can't handle your life. I can handle it for sure. But that emotional shut down that occurs that only happens when you mention a daughter with brain damage is so isolating. All of the sudden people don't know what to say and there you are - isolated again. i get that - it happens here to. People have a variety of mechanisms that push my life in some corner of their consciousness so they don't have to really deal with it. And of course that is not what I intended. i was just sharing the day to day like they were.
I'm glad you called me on it.
Kathryn
Wu8bS4 Your blog is great. Articles is interesting!
Post a Comment