Sunday, August 17, 2008

It's Worth Repeating

I first published this post way back on Feb. 7, 2007. Due to a recent email I received, which I will not be sharing, I will be reposting this entry. I hope it will help the author of the email as well as others who are feeling that they are the cause of their child's issues. You are not alone. If you found your way here through a search, I hope you will also share your story so others will know they are not alone.

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Invisible Issues Related to Prematurity

Wheelchairs, glasses, feeding tubes, leg braces... all are outward signs of prematurity . If you need services at school, you'll get them. If you go to the doctor, they listen to what you have to say. Neighbors understand why you are tired. Family offers to help.

Advances in medicine and interventions have lowered the number of children who need those devices. For this I am thankful. My daughter does not (currently) need any of the above (although she did wear leg braces for a few years).

But, there is another side to prematurity... Invisible issues. They are clear as day to us parents and the preemies that experience them but invisible to the outside world and largely ignored by the medical community.

anxiety disorders
sensory integration issues
psychiatric issues
behavior issues
fine motor delays
fatigue
feeding issues
weight and growth issues
reflux issues
head aches
autism spectrum disorders
coordination issues
sleep issues
severe constipation

Over the years I have heard many parents say that they were blamed for the above issues.

I am also one of those parents who was blamed. For a brief moment I believed it. (I must not be feeding her enough, I must be babying her, I am not strict enough, etc) But, as I started talking to other parents I realized that other preemies were suffering with the same issues.

If you are thinking, "these issues are not that bad" then you have never lived with a very young child who stabbed herself because her "thoughts" told her to. You have never lived with a child who has such severe constipation that, despite adult doses of Miralax, can still tear herself bloody when she has a bowel movement. You have never lived with a child who will drop to the floor and scream when hearing a voice on the loudspeaker. You have never lived with a child who will cry because she is so tired that she cannot run with the other children.

These invisible issues are what makes me continue to fight to get the word out. Why should any parent feel responsible, like I did, when the above issues are actually commonly reported by parents of preemies? Why should I stay quiet and let the doctors feel that preemies are fine after age 2? How will conditions improve? How do we expect the doctors to know?

I've been told that my posts sound angry. Since true emotion can be misunderstood, I want to be very clear. I am not angry. I was the one who chose to have the doctors save my daughter. As it stands right now, I cannot look at my daughter and honestly say that I would choose differently.

Frustration is the emotion that I feel. Frustration that misinformation is still the norm when it comes to preemies. I feel an incredible sense of duty to be a voice for future preemies and their parents. I am thankful that I am not alone in this passion.

32 comments:

Anonymous said...

Helen Harrison writes:

I am corresponding with a doctor who conducts premature follow-up studies. I will call this doctor, Dr. X.

I recently sent Dr. X some posts from this blog and some of the mailing lists about preemies (children and adults) who act out violently and/or destructively.

Dr. X responded: "There is no evidence of violence in the literature."

Many of the posts I sent Dr. X also described sound sensitivity as a trigger to some of these violent episodes. But Dr. X informed me that there is no evidence for sound sensitivity in the literature.

Dr. X also informed that the descriptions I had gathered from parents, and in some cases from preemies themselves, were not relevant because only those with serious problems are on the Internet lists.

It is very discouraging to me that medical professionals seem not to be interested in listening to families who are actually dealing with the "facts on the ground."

For example, for over a decade, I've spoken at medical meetings about the connection between autism and prematurity. I published a letter voicing my concerns about it in the New York Times in 2002. For my efforts I was called crazy and worse.

Yet in the last year or two professionals have suddenly started acknowledging that this connection exists! In fact, about 25% of VLBW preemies test positive for autism early in life.

But previously, because no one was looking for it, no one found it!

I wonder if any medical professional has looked into the sound sensitivity issue? I sincerely doubt it, and no one seems to want to look into it since it isn't already documented in *The Literature*.

Yet from the volume of posts on the lists, sound sensitivity seems to be one of the most common legacies of prematurity.

I don't know what can be done to bridge the gap between professionals (who apparently think they have all the answers) and the parents and preemies who live with these realities all day every day.

Any thoughts?

Helen

Michelle said...

I don't have any answers for you Helen. But how about we hog tie in-laws who think that there's nothing wrong with my former 25 weeker that a few well-placed spankings won't handle and send them to your Dr. X. Especially since MIL seems to have father of said preemie's ear and is bringing him over to the dark side, even though certain doctors, teachers and books have said there IS something wrong. We just don't have a definitive diagnosis because we haven't found our way to the proper specialist yet.

I am SOOO tired of being told that his sensory issues and possible autism are just because I need to stop looking for something to be wrong and to start disciplining him more! It makes me want to go postal!

Anonymous said...

Helen Harrison to Michelle:

I don't know how parents of preemies make it through the well-intentioned (usually) interference of relatives, friends,(some) therapists, and (some) physicians who are basically clueless.

I know that without the constant support of my mother and step-father (who were also parents of a FT child with problems, and had suffered through all this before me), I could never have had the strength to bear it.

What you might consider doing is compiling a stack of the neurological literature (yes *some* literature is helpful here) and give it to your in-laws, along with an invitation to accompany you on the next visit to whatever physician you trust who might give these people a clue.

I'd be glad to help with the literature part.

In solidarity!

Helen

Michelle said...

Michelle to Helen,
Thanks for the offer. Unfortunately, she wouldn't read or listen to anybody else. (She has been to several appts, including his neuro with me). She's just one of those who raised 5 children and always has something passive aggressive to input, whether it's about the way I'm raising my nerotypical child, or my not-so-typical child.

Another unfortunate: we currently live with her, as she allowed us to move in with her when we needed to sell our house before we lost it because of debt and one income incurred from preemiedom 2+ yrs ago. So, I kind of have to put up with it and keep my mouth shut. The good news: we are now debt- free and purchased land last Spring which we will begin building our new house on in Feb! I don't know how much longer my marriage will survive!

I am starting to stand up for myself and my parenting, though. It's the fact that she's getting to my husband that bothers me the most. Like they are talking about me behind my back about how bad a parent I am and how I am searching for excuses for his behavior that will give me an out for my bad parenting.

Sorry to use your comment section to vent Stacy :) We're in the middle of a battle with the insurance co and a Dev'tal Specialist trying to get him seen for these issues and we have the red flags for autism and the doctor is merging, so 3 days before our hard-won appt (it took nearly a year to procure) they became out-of-network. Nobody wants to cover them. Back on the waiting list we go.

BTW, you and your readers were the ones who sent me in the right direction nearly a year ago, when I sent you an frantic email asking for desperate help, so Thank you!

Anonymous said...

Be honest Helen. Some preemies test positive for autism, get tx, then "grow out of it" because they actually needed treatment for sensory issues. Not the same. Not responding more.

ThePreemie Experiment said...

Dear Michelle,

I am so sorry for what you are going through with your family. I know all too well how it feels. The sad part is that you will one day have the respect from them, when they realize that your child is actually not outgrowing their behavior. His behavior will, one day, no longer be appropriate for his age. I know this situation all too well too.

I can remember crying one day, when a relative accused me of searching for something that wasn't there. I wasn't crying because of what they said, but I was crying because I was wishing that there was actually something wrong with me. That would have been the easy fix.

Not a single one of the above mentioned relatives questions us now.

When I wrote that post, over a year ago, I was still quite bitter about the lack of respect/help that we were getting. It's still painful.

And, please do not ever apologize for venting in the comments section of this blog. I understand where you are coming from!

Hugs

Stacy

ThePreemie Experiment said...

Helen,

Thank you for posting about Dr. X.

Another reason I reposted this entry was because of our conversation regarding Dr. X. I still am not quite sure where the solution can be found but I sure do know that we need to keep blogging about it.

ThePreemie Experiment said...

Anonymous wrote: "Be honest Helen. Some preemies test positive for autism, get tx, then "grow out of it" because they actually needed treatment for sensory issues. Not the same. Not responding more."

I'm going to jump in here. Helen can also answer but I wanted to chime in.

I have spent quite a bit of time thinking about the very situation that you are talking about Anonymous. Paige is one of those kids who was diagnosed on the spectrum (PDD-NOS), which was later removed (at our insistence) because she no longer fit the label.

But, I do not believe, at all, that the original diagnosis was misdiagnosed due to sensory issues.

I do believe that she, along with others that I know, matured and was able to learn how to respond to people. Social interaction became a learned behavior.

Does this mean that she is no longer on the spectrum? No. It only means that a criteria has not been created that she fits within. We have had more than a few "specialists" in her life that have suggested that she is still on the spectrum. But, they all have been stumped where to put her.

Anonymous said...

To Anonymous who feels that children "grow out" of autism:

The evidence from later in childhood (the EPICure study and more) show a high rate of autism in preemies (5 to 12 times that in FT children). I'm sure some preterm children no longer get the autism diagnosis in later childhood (which doesn't mean they are "cured"), but some of them in adulthood, get the diagnosis again, or for the first time, or receive a similar diagnosis of schizophrenia.

MRI studies show that FT adolescents who are autistic show the same brain scan abnormalities as VLBW preemies. This means the problems are rooted in the neurons and axons and glial cells of the brain...and all the therapy in the world doesn't change it.

"Michael Savage" (Michael Wiener, in real life), the right wing talk show host, thinks autism is curable by parental discipline. You seem to think it is curable by SIT therapy, despite a total lack of evidence.

Both you and "Savage", I think, are ignoring the underlying brain pathology.

Helen

Kristie McNealy said...

In reference to Helen's comment:
"I wonder if any medical professional has looked into the sound sensitivity issue? I sincerely doubt it, and no one seems to want to look into it since it isn't already documented in *The Literature*."

And Stacey's comment:
"You have never lived with a child who will drop to the floor and scream when hearing a voice on the loudspeaker."

I am SO glad you guys said this. Our daughter is TERRIFIED of loud or unexpected noises. Cars or motorcycles revving their engines will send her into complete hysterics. Thunder makes her sob with her hands over her ears while saying "it hurt you."

As a baby, she cried and cried whenever she was around noisy kids. I thought it was all the chaos causing sensory overload, but now I think it was actually the noise of the kids yelling and laughing, and not the other stuff going on.

I wonder if the noise actually does "hurt" to her.

I think C has some issues that could put her on some undefined part of the spectrum. I don't think she actually fits any one diagnosis, but she definitely has a lot of quirks.

Anonymous said...

To Kristie from Helen Harrison:

I wonder if Dr. X would listen to you since you are an MD?

If you contact me privately at Helen1144@aol.com I can put you in touch with Dr. X if you think it might help.

Helen

Kate K. said...

Regarding Helen Harrison's original comment and her statement "I wonder if any medical professional has looked into the sound sensitivity issue? I sincerely doubt it, and no one seems to want to look into it since it isn't already documented in *The Literature*."

That is very much a systemic problem with the quantitative sciences and social sciences in general. I teach research methods and statistics in the social sciences at a research one university. Qualitative researchers tend to use inductive approaches that rely on anecdotes and don't see statistics as valid ways of knowing. Quantitative researchers tend to eschew any anecdotal evidence as a starting point for inquiry and depend on prior theories in peer review journals as "the" valid starting point for any research, which means that if it isn't in print, it isn't worthy.

Although one could certainly use anecdotal evidence and then logic to build a theory not found in the literature, the academic peer review process makes publication difficult b/c the peer reviewers want to know where in the literature the idea comes.

The end result is that there is often much less creativity and imagination in research as one might think. The best bet is that a young researcher will come along and take up the task, but younger researchers start as nontenured, meaning that if they ever hope to become tenured, they have to play the game of focusing on refining "established" theories in order to get published themselves (and hence get tenured). In addition, it is nearly impossible to get grant money to conduct studies based on ideas that aren't prevalent in a given discipline.

I'm certainly not saying it is right. Movement inside the academy on ideas is often very, very slow (even if the proof is right in front of doctors' eyes if they would just be willing to open them).

Keep up the good fight everyone!

23wktwinsmommy said...

This is kind of off-topic, but it brought to mind something we're dealing with. Serena, my soon to be 2 year old former 23 weeker walks and is now trying to run. She walks pretty well, but is clumsy especially on uneven/different ground surfaces. To get her more aware of her body in space and more comfortable on different ground textures is her IFSP goal with EI. I said to the workers that I wondered if there is a neurological component to this slight clumsiness and strange gait that she and other walking former preemies have. Our son is still not walking (is with a reverse walker...kind of) and since he still doesn't have a CP dx, I know Serena will not get one. But to me it seems clear that Serena's gait and "clumsiness" is due to prematurity and is probably neurological in origin.
As for loud noises, Edwin used to have a very difficult time, especially at the in-laws who insisted upon screaming and talking abruptly in loud voices (not angry just jubilant I suppose.) He'd cry so hard he's vomit. He has gotten much better over the past year, tolerating loud talking better, but still doesn't like yelling (the high school graduation we took him to was a disaster) and will cry when startled, but is ok with the vacuum and motorcycles. There are way too many preemies who cry at loud noises for it to be coincidence.
What is curious to me is there seem to be many trends in preemies that warrant a "preemie syndrome" list that is acknowledged and accepted by doctors, the school system, and therapists alike. I figure it will only be a matter of time before doctors tell parents about these things as opposed to us figuring it out through our connections with fellow preemie parents. Feeding issues are HUGE for preemies (one thing we have dodged completely... thank God) and this is just one of the many common trends I see amongst our preemie peers and should be acknowledged as common in this population as opposed to being blamed on parents.
Unfortunately, and frightening, without the acknowledgment from physicians, some parents will be blamed for preemie-related issues.

Kristie McNealy said...

To Helen:

I'll send you an email tonight.

To everyone:

I think we're all pretty much in the same boat on this one. No matter what our varying opinions are on ethical issues, etc, it's hard to deny the unexpected "issues" our kids are experiencing.

Really, even with 90% of medical school under my belt, with a serious focus in pediatrics, I had no idea what we were getting into when we delivered at 31 weeks. I knew she would most likely survive, and I knew about the big NICU complications like NEC, sepsis, respiratory issues, brain bleeds... This "other" stuff was a mystery to me.

I met a women at the store today shopping for baby gear. Her DIL is on bedrest, at 29 weeks, and can't wait to hit 34 weeks and "be done with this." I chatted with her for a long time about bedrest, every day matters, the NICU is really hard, blah, blah, blah. I don't know if I made any impression because C "looks so good!" I hate that part. I'm glad she doesn't have any major disabilities, but it makes it very hard for other people to see that she has any differences at all, and might need help with certain things or situations. If I hear another person say "I didn't say a word until I was 3 and now look at me" I'll scream!

ThePreemie Experiment said...

Kristie wrote: "I am SO glad you guys said this. Our daughter is TERRIFIED of loud or unexpected noises. Cars or motorcycles revving their engines will send her into complete hysterics. Thunder makes her sob with her hands over her ears while saying "it hurt you.""

When Helen and I first discussed Dr. X's dismissal of sound sensitivity I was outraged.

Honestly. If there are any medical people reading this section of the comments section please take note... Sound sensitivity is real and it is being talked about by MANY preemie parents and former preemies themselves.

And, if anyone thinks that being sensitive to sound is "no big deal" well you should spend a day in our house. It is painful to watch. If another person tells me that all we have to do is expose her to noise and she will eventually get over it... I'm going to whisper some not so nice words in their direction.

When Paige was little she used to tear her skin on her body when exposed to sudden noises. At the very least she would cry and say "help me".

She is almost 10 years old now. The severity is still there but she has learned that she cannot meltdown every time. But, dear motorcyclists, she will yell at your when you drive by and scare her. It is one heck of sight to see Paige run up to men as they are getting on their motorcylces and ask them to wait until she passes.

What causes this? I really do not know nor do I think we are going to find out any time soon. But, as I have been saying for over a year now, doctors need to include this in their discussions with parents upon discharge. Parents need to know that sound sensitivity is a REAL issue and caues great stress on a preemie.

ThePreemie Experiment said...

Kate... thank you SO much for your explanation on medical research. It really put a lot into perspective for me.

ThePreemie Experiment said...

23wktwinsmommy wrote: "Unfortunately, and frightening, without the acknowledgment from physicians, some parents will be blamed for preemie-related issues."

It happens all of the time. Over the past few years I've been through very scary situations with other parents who were being accused of starving their preemie children. It makes me sick.

Here is one family who is going through the system right now. I should note... I do NOT know them personally. I came across the link to their blog via google alerts.

http://stringtheorem.blogspot.com/

When Paige was 4 she weighed 27 (or was it 29?) pounds. We were at a GI appointment where the doc was accusing us of not feeding her enough. We were telling him that we thought her reflux was still there. He countered and told us that reflux clears up by age 2-at the latest. We begged him for help. With a nasty tone to his voice he said something like, "well you don't want us to have to put a mic-key in do you?" As if her needing a tube was OUR fault! Paige then said (with a very cheerful voice) something like, "Oh, then it wouldn't hurt when I eat anymore."

He gave us this look like we had coached her to say it.

Because Paige looks good and is smart, our concerns are almost always met with disbelief.

It shouldn't be this way!

23wktwinsmommy... hang in there with Serena's gait. As she gets older it will become less noticeable. It may still bother her but she will learn to compensate for balance issues. Paige was very much like Serena. As she grew she learned how to counter balance so she wouldn't fall as much. She still does fall but that is because she never stops running. She doesn't fall as much when she walks now.

Anonymous said...

You noted "sleep issues" in your list of invisible issues. Could you point me to info on that? My 26 weeker (now 13 mos actual) is a terrible sleeper. The developmental specialist seems to want me to believe it's because I'm not handling her correctly. I disagree...

Thanks for your help.

Amy

Michelle said...

23wkstwinsmommy,
When my son was, maybe 24 mos/20mos his PT referred us to an orthopedistto have inserts made for his shoes. He had just started walking and had that unusual gait. He rolled his hip and feet, though he didn't walk as much like a zombie as I've seen other preemies do.

We had been given an informal diagnosis of CP at his 2yr NICU follow-up clinic. But it wasn't until just a couple mos ago, when he was almost 4, that his neuro actually explained how his CP affected him. He actually showed the CP to me. (we had to changed neuro, boy how I wish I had done so years ago!)

I don't really know if it is written in his charts anywhere, though, except where I have said it. After that NICU clinic appt, I went back to his EI and said he has CP and his IFSP were adjusted as such.

Now, he has an IEP, and I just told them the same thing. It's very mild, and you have to know what you are looking for, but it os in his legs and his hands, and so impedes his day and his development.

So, don't give up, and definitely, don't allow one child to fall through just because the other doesn't have a diagnosis.

We Mama Bears have to keep fighting for our cubs!

Anonymous said...

Just wanted to mention a new fun approach to helping children with coordination and balance issues. Wii Fit! My son, 6, loves it!
Tammy

Anonymous said...

Helen Harrison writes:

The words "cerebral palsy" were not mentioned to us until Ed was 8 years old and needed heel cord surgery. His CP is categorized as mild/moderate but it has had a huge negative impact on his life.

Helen

I love all 3 of my gorgeous children, Lilike, Locke & Anjeni said...

I know whats it like to feel bad about things going wrong with your 1st pregnancy.

How bad did I feel and will always feel responsible knowing for a fact that my daughter might not be here today because I did not get early treatment for signs of anemia that turned out to be severe maternal anemia at 35 weeks pregnancy with Lilike. I thought slight breathing issues were caused by Lilike pushing up on my ribs. I was stupid to think that. Due to me not going to the rest of my prenatal appointments after 20 weeks because Lilike looked great on the ultrasound. Figuring my mum always had great pregnancies and healthy babeis even though she smokes alot. And I was very healthy then. I took prenatals, don't smoke and do not drink. Shes still very lucky to be here and so am I. She was a great birth weight of 7 pounds 1 ounce and 49.5cm. I do feel and will always feel awful for poor Lilike for what she went through. Although it was the rapid and evry stressful fast birth and Lilike slowly absorbing the amniotic fluid that put her in the NNU and she was treated as if she had an infection because of the high white cell count at birth. Even though she is an intelligent healthy happy and very loved little girl. She sat up at 6 months crawled at 7 months and walked roudn the walls at 8 months. Took her 1st steps unassisted at 10 months and 1 day. She might not be here today to show me how amazing Lilike is if she had not been given the right care at birth. Right from the start of my pregnancy other then the severe morning sickness t hat went away I got alot of pain in the tummy when I ate. I should have got that seen to but I thought pains come with a baby growing within you and getting bigger. My mum smoked in pregnancy with all 5 of her children who were born healthy and smaller then Lilike. And we lived in the country and she had no prenatal care. I later found out my mom was born anemic at term weighing around 3 pounds! My mom was also born after her 5 month old sister Wendy died of holes in th heart in the late 50's and her 10 day old premature brother Ian who also died from holes in the heart. But she told me her mom used to smoke and her dad. Somehow I never took it up and neither have my mums other kids. I was told by 1 mom online that I was the cause of my severe maternal anemia in pregnancy. Even though she had maternal anemia but not as bad as mine. One fill in nurse asked me if I had my daughter at home and what had I done. What happened at the birth etc to have made Lilike sick. I talked about her little foot with the pulse oximeter the nurse thought I might touch her foot so she told me off said don't touch her foot or you will start a code blue. She was not looking very happy when I asked permission to hold my daughter.

My youngest baby Anjeni was also born healthy after having had my 2nd child a healthy son Locke that went overdue and was just 3 ounces bigger then our 1st born baby his 7pound 1 0z sister Lilike. Anjeni was the biggest baby at 7 pounds 13ounces and 52cm with apgars of 9 and 9. Due to me taking iron tablets early from 9 weeks into my pregnancy. Lilikes apgars at birth were were 7 and 9 she did cry a little and look around alot after birth. The fact that she was so pale and she is so fair skinned even on discharge day is the reason she had to stay in NNU for 7 days and in hospital for 9 days even though she was a term baby. and Lockes apgars were 8 and 9. His Dad cut the cord that was wrapped around his neck twice away from his neck as I pushed him out and he was healthy. But he never cried until he got his vitamin k then he screamed.

mom to lilike, locke, anjeni said...

Paige as she gets older might put on weight more easily. All my life I was a thin child. My sister was my moms smallest baby and thinner the me as a child and then she has put on heaps more weight even before becoming a mom in 2007. In my family everyone was a small baby and thin child and teenager then easily put more weight on as adults. I was bigger then my sister but the only sister who went back to my thin shape after bithing a 3rd baby a 7 pound 13 ounce 52cm baby girl naturally. And 1 7 pounder 1 0z 1st baby and a 7 pound 4 0z 2nd baby. My sister who weighs more then me her only baby was born small but still bigger then her birth weight

Anonymous said...

Helen Harrison writes:

We have been up in the mountains this past week with the extended family celebrating several birthdays.

Ed, our 32 year old preemie, retains a horror/fascination with birthday parties, that so many preemie parents have reported in their younger preemie children both here and on the various preemie lists.

When Ed was little, birthday parties were a major source of horrendous meltdowns. He couldn't handle gatherings of noisy children; the singing of Happy Birthday terrified him; and the popping of balloons all scared him to the point of hysteria. We rarely lasted more than a few minutes at these gatherings, and forget about taking him to NICU reunions!

Ed still freaks out when "Happy Birthday" is sung on the radio. His favorite XM 60's station celebrates celebrity birthdays, and Ed breaks out in a cold sweat and becomes panicky whenever this happens.

We often "joke" that perhaps the circumstances of his birth scare him about birthdays. But I think it is something else -- brain abnormality related to prematurity -- that makes him hyper sensitive to sound.

I once spoke with a woman who had developed hydrocephalus at birth and who also had mild CP. She told me that she, and other adults with hydrocephalus she knew, could hear sounds the rest of us can't --for example dog whistles.

I wonder if some differences in the brain of preemies (particularly those with dilated ventricles or periventricular injury)make them unusually sensitive to noises that the rest of us hardly notice?

Helen

buddhist mama said...

Thanks for keeping us all aware of these issues and bringing them to the fore periodically, while much of the medical community overlooks, ignores, or is simply in denial about the 'Preemie Syndrome' as one poster chose to call it.

I don't have my medical dictionary in front of me, but from what I recall reading in the medical anthropology literature a syndrome differs from a disease because a syndrome consists of a cluster of diffuse traits that are NOT shared by all individuals who fall into the syndrome. Thus individual children may differ dramatically in diagnosis, treatment, and outcomes for the preemie syndrome---and yet there is common thread that links them.

I wait to see when or if the medical literature will ever apply this concept to prematurity and thereby begin to address this cluster of issues that so many preemies have.

There are many many alternative therapies that work WONDERS for many of the invisible issues of prematurity. There was a post some time ago addressing these therapies and a promise of more to come---but I have been very busy these past few months and may have missed it, so apologies Stacy in advance.

Our twins, born at 26 weeks were deemed fully caught up/normal in their neurodevelopmental followup at 15 months and yet had a lot of trouble getting to that point with conventional PT and OT. It was only when we explored other options including Body/Mind Centering Infant Therapy that we saw results with both twins. I would be happy to share more if people want to write me directly----my email is kgutschow@williams.edu.

And regarding the lack of creativity in academic institutions/research, yes I can vouch for that and was just talking about that with a friend of mine who teaches in the hard sciences. All of us in both hard and soft sciences suffer from publish or perish pressures that constrain the ability to pursue new/untested avenues of research.

Anonymous said...

Kim wrote:
And regarding the lack of creativity in academic institutions/research, yes I can vouch for that and was just talking about that with a friend of mine who teaches in the hard sciences. All of us in both hard and soft sciences suffer from publish or perish pressures that constrain the ability to pursue new/untested avenues of research.

I am also wondering if there is an invisible pressure, a kind of political correctness in medical research, that says "Don't mess with neonatology, since it is such a 'successful' and lucrative part of medicine".

I can relate to the mild CP issues, the feeding issues and the sound sensitivity issues. My best successes have been with the therapists who document their observations about Vic--and they become middle-men--mediators, if you will--between me, the crazy, and the disbelieving doc. The doc "listens" better to the OT, PT or SLP. And I am dissed--but at times that is okay--because then I am off the hook and am not blamed for the problems. It cuts both ways. So, enlist the help of your therapists--it may work out for you, as well.

Chris and Vic

ThePreemie Experiment said...

Hi Kim,

It's so nice to see you! I have thought about you so much and wondered how you were doing.

"publish or perish" seems to be a common theme. But, what I do wonder is why it wouldn't also be lucrative for the researcher to "stumble" upon something that is commonly complained about but not reported. Wouldn't that researcher become "known" for this "discovery"?

I know that when Dr. X came out with an article, about 3 or 4 years ago now, it wasn't welcomed in the NICU medical community but us parents were screaming "thank you for validating what we live every day!". I drove 6 hours (while pregnant) to hear Dr. X speak at a function that was filled with NICU staff. Dr. X was one of the featured speakers. So, not a welcomed message but one that gained Dr. X much press which I am sure also gained Dr. X money.

Money seems to be the draw everywhere else, so why aren't Dr.'s jumping on that bandwagon?

I'm also wondering why Dr. X was so willing to speak up for preemies/parents then but not willing to see that there may be other issues that are not reported in current literature.

Anonymous said...

Helen Harrison writes:

Dr. X has been a major hero of mine for some time. Dr X is a person usually ready to tell it like it is.

I recognize that no one wants to hear information that is new or controversial in their area of expertise, particularly when delivered by someone as homeschooled and uncredentialed as I am. (We saw this on some of the neo blogs last year.)

I also remember, not too many years ago, having the "autism discussion" with Dr. X. My views were not well received. Times and the evidence, however, have changed.

But I must emphasize again, Dr. X is one of the more open-minded of the docs doing follow-up. Dr. X, for the most part, *gets it.*

We should never feel totally discouraged. We have to keep telling all the follow-up people about what we experience with our children. We have to realize that the interviews and questionnaires and tests that are commonly used to evaluate preemies do not always reveal our childrens' unique traits, problems and vulnerabilities.

We need to speak up about the strange traits we see in our children. We have to overcome the natural feelings we have to present our children in the best and most normal possible light when we bring them to follow-up -- otherwise we leave false impressions that, in the long run, serve no one well.

We have to be persistent and be prepared to be called "neurotic parents" and "crazy" when we talk honestly about our childrens' lives and disabilities.

The MRI studies show plenty of reasons why our children might not be typical -- and our childrens' atypical brains are different from those of fullterm disabled children.

We need to keep speaking the truth as we see it, and eventually we will get the attention of the professionals.

Helen

Kyrsten said...

Kind of related:

On a preemie health website, someone posted this link:

http://m.apnews.com/ap/db_7731/contentdetail.htm?contentguid=crBBEtMh

The story discusses underlying infections which may cause premature birth.

I've always been frustrated by not knowing what went wrong with my boys' pregnancy; Jonathan's primary cause of death was organ failure due to sepsis, which occurs in less than 1% of pPROM cases.

It's frustrating to quote stats like that, along with the fact that 85% of infant deaths are due to complications of PROM, with 70% of those cases unexplained.

I was told we'll never know "which came first--" did an undetected infection *cause* the sac to break, causing a secondary infection? Or was an infection only the *result* of the break? (most likely, both!)

However, the study is one of very few I've seen done on this topic, and their recommendation is to have an amnio. to determine if infection is present. I'm reluctant to do that, this time around, because of the risk of PROM!

'Can't win!!

Tamara Coburn said...

This post rings truer then anything else I have read. I can't even begin to express the frustration and dismissal I've had from neighbors, family and friends when they tell me my preemie "looks perfectly healthy." He has 14 different doctors/nurses/therapists that we see regularly. He's a 1 year old who is globally delayed and tests at a 7 month old, only at a 4 month level with language, a feeding tube (which would be the only way he "looks perfectly healthy"), heart damage, he's failed his latest hearing tests, has had 4 surgeries and 3 more in the next 2 months. But because he's a bit chubby and happy... I'm told that I should refer to him as a miracle and be thankful. All, of course, coming from people who have no experience. I sound bitter, but it's the frustration showing.

I don't want doom and gloom surrounding my child, but I do want acknowledgment and maybe a little recognition that this is hard and we have a long road ahead. That no I don't get "used to it" handing my child to the doctors every time for a surgery or test. Instead of just nodding my head now when someone makes the "perfectly healthy" comment I've turned just a tad sarcastic. "Well if you call someone with a team of doctors, a feeding tube and 3 upcoming surgeries healthy... then yeah, he's doing great."

I've come to the conclusion that some people literally can not accept the fact that some kids do NOT turn out okay. That in their world, everything works out, the medical community cures and fixes everything. My husband actually tried to stress to a neighbor that my son still has a long uncertain road and they downright refused to believe that a child wouldn't just outgrow all these difficulties. That in 10 years medical science will have advanced so far as to cure anything he might be facing. Messing with some people's idea of a normal world causes them to get quite defensive. Maybe it's to reassure themselves that if anything happened to one of their children it would be fixable. Or that they just honestly have not been exposed to handicapped or children struggling with disabilities.

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kalli house said...

I totally agree with the signs invisible signs of preemies. At first glance, I'm normal, and maybe I am(as my husband says, define normal because none of us are). I was born 4 months premature weighing 1 lb 8 oz (i'm sure people are tired of hearing my stats) but I need some answers. I've been plagued with sporadic anxiety since I was a school aged child. I cried every day until 4th grade before school (note: I did lose family members and one friend during this time). Now, I currently substitute teach(which I'm going to reliquensh, due to my short temper) and every time I walk into an elementary school I start getting antsy and shaky(flashbacks)? Also, I'm on the Pill, yes the lovely Pill. I read an article by Dr. Stanley Walters about female preemies having less of the female hormone, so if that is the case (because I am a tomboy and think more like a guy), the Pill is doing what to me? I can tell you what it is doing: weight gain, depression, anxiety(preemie or not?), and not acting like myself. I feel like an outsider in my own body. I'm not as outgoing as I as 2 years ago, I'm just basically here. Sure I'm depressed because of some situations in my life but I've had them before and the onslaught wasn't THIS bad. Yeah, the invisible traits of preemies are not fun, and they have lasted with me for these 22 years of life including digestion problems, anxiety, depression, irritability(and here I thought it was genetic), and a lack of empathy and emotion(that's my own thrown in). So what about the Pill? I know research is done on "healthy" women, but what about preemie women who take this? What are the side effects? Should I consider other options? (seriously thinking about it, everyone, even me, misses me). Thank you for this eye opening article. Blessings.