An article was printed in today's NY Times, titled "The First Ache".
(Please forgive me for not including any of the article. I am not sure how much I am allowed to copy into a public blog.)
The article tackles the question of whether or not preemies (and fetuses) can feel pain and whether or not it alters the child.
This argument is not a new one and has been known to start comment wars on blogs. I am asking everyone to be mindful of others thoughts and research on this topic when they post a comment.
Dr. Phillip Gordon (neonatologist) wrote his feelings on the topic in a post titled "Debunking the Pseudoscience of Infant Memories"on his blog Tales From the Womb. I am not including a link to his blog to incite a war on docs. I simply want to show both sides of the coin.
I am not a doctor nor am I qualified to comment on the science behind the issue. I am, however, a mother of a premature child who endured her entire NICU stay without pain meds.
I find it hard to believe that prolonged exposure to pain would NOT cause change in a child.
I read the article as well.
ReplyDeleteI know that on the narof website, there are several research articles cited under the section "Pain and Suffering" that state the same thing.
I would cite some of them here but also am not sure what is ok to cite related to copyright issues.
Joan
I don't care what any study says.
ReplyDeleteAnyone who has seen their baby writhe and cry while some nurse sticks and resticks your 24 weeker's rolling veins with an IV knows the answer to this question.
Doctors used to say circumcision in full term babies didn't hurt babies and they did not give them anesthesia or painkiller of any sort during the procedure. But ask any nurse who went through that with the baby and she'll tell you they screamed and cried? What for? Fun?
Now they give boys anesthesia.
That's just my opinion, anyway. No flames on anyone who thinks differently.
Andrea
To add to, or perhaps, complicate this issue further, there was a piece of research this week on the effects of pain upon adults. The effect is similar to dementia or cognitive disability . . .
ReplyDeleteChronic pain has this effect, anyway--a constant flood of cortisol.
I agree with the viewpoint of the Belgian anesthesiologist, Van De Velde, who says that whether we induce a stress oreaction or "pain", it is the same in terms of altering the developing neurological system. Whether or not we call it PAIN is only a semantic distinction.
On the preemie support lists, we have a long history of testifying about our childrens' altered responses to pain--either hypersensitivity to pain or the opposite--or each response, by turn. Which is a finding reported in the NYT article as well.
What is the bottom line? Since we are not sure if fetuses feel pain or only a stress reaction; and since this has already been their experience and we cannot undo it, where do we go from here?
I think we should 1) heighten our advocacy skills as parents and; 2) tune in to this and other ethical issues in medicine.
In #2, we often stand in awe of medicine and its degree of sophistication at this time in history . . . Yes, mostly with respect to technological advances. But has ETHICS kept up with the technological advances? Just because we can do medical miracles, should be always do them? Do they have ethical implications that are unknown to us and/or out of our control?
I am a medical professional, but I often question medicine, for the reasons I mention above. Medical people focus on technology and on evidence from studies--but wait, there are PEOPLE out there in the clinical setting, and they are possibly in pain. Certainly they are in a state of confusion about buying the whole medical package and submitting to whatever the doctor knows FOR A FACT because there have been studies on it. The reality is there is not proven FACTS because there are more studies coming out all the time that question or disprove prior studies. The article bears witness to the controversy around whether or not fetuses feel pain . . . some of the data supports this "fact," and some data contradicts this "fact".
In our headlong rush to save our babies born prematurely (or our aging parents or grandparents who have end-stage CA or heart disease or dementia), we may be agreeing to putting them through a lot of pain. This is a huge ethical issue to be figured out with our best spiritual lights and our best humanitarian lights.
We have a heavy responsiblity to be ethical, humane beings--with or without a medical stake/background. All of us. Individually. Must search our souls.
Chris and Vic
There was a study that came out last year that did functional MRIs (I think, maybe it was a different type of scan, but the point is still the same) on babies in the NICU that were undergoing heel sticks, and showed that the parts of their brain which lit up were consistent with the parts of the brain that light up in a person experiencing pain.
ReplyDeleteI assisted on my own preemies PICC placement (I was in med school there, and the fellow couldn't find anyone else to help). They gave her meds to relax her, but I'm pretty sure if I hadn't been there, they would have skipped that part. Either way, she writhed around and screamed. I'm sure she was in pain.
There's been more than one study that addresses the fact that preemies who undergo repeated painful stimuli respond differently to pain when they are older (my own preemie is hypersensitive, others are the opposite).
I think we should just err on the side of caution, assume they can feel pain, and manage it as safely as possible.
-Kristie
In recent studies published in _Pediatrics_ and _The American Journal of Neuroradiology_ (AJNR) it has been noted that the cerebellum in ex-preemies is often abnormally small and/or likely to be damaged. Further, cerebellar abnormalities appear related to autism and autistic traits that are common in preemies.
ReplyDeleteIn the AJNR article, the authors comment that cerebellar growth disruption and abnormalities may occur because of interference with a critical state of cerebellar devlopment during the 24th to 32nd weeks of gestation. They state that during this period permanent developmental disruption to cerebellar growth may occur because of "inordinate activation of afferent pain pathways.."
By the way, cerebellar abnormalities are found on autopsy in over 90% of neuropathological studies in persons with autism.
[Limperopoulos et al. Long Term Sequelae of Cerebellar Injury in Preterm Infants. Pediatrics 2007;120:584-593.
and
Messerschmidt et al. Disruption of Cerebellar Development: Potential Complication of Extreme Prematurity. AJNR 2005;26:1659-1667]
So, yes, pain in the fetal and neonatal period -- particularly before 32 weeks gestation -- appears to make profound, permanent, adverse changes to the brain.
I've pondered this before - is pain inflicted with "good" intent and pain inflicted with "bad" intent different to our unknowing premature children? Or is it all just torture?
ReplyDeleteIt has been almost 22 years since my girls were in the NICU. One of my daughters had a ventriculostomy placed for hydrocephalus by a physician's assistant who refused to give her anesthesia despite pleas from the NICU nurses. The fluid was removed too quickly and my daughter's skull collapsed. A monumental botch job all the way around. In addition to this, during my daughter's 5 months NICU stay, she endured over 500 heel sticks - none of which were done with anesthesia, I'm sure. When did we find out about this, you ask? Over a year later when we got her medical records.
Here we are 22 YEARS later, and still having to have this conversationl It is truly mind-boggling.
Yes, preemie babies feel pain, even those who are terribly brain damaged.
I will preface this by saying I am not a dr, medical professional of any sort. I can only offer my ancedotal "evidence" as a mom to a 25 weeker. It would appear that he felt pain. In adults rapid heart rate, grimacing, fast breathing etc all indicate pain. It should follow the same would be true in preemies.
ReplyDeleteMy son endured all the normal ivs, piccs, heal sticks etc with no pain control. I think though that this pales in comparison to two situations. One was a picc gone bad that infiltrated and now his entire forearm from elbow to wrist is one big, nasty scar. This must have been very painful. The other is when he was term and still in the nicu, they performed a fundoplication, gube and bilateral inguinal hernia repair. After surgery the Neonatologist REFUSED to give pain meds despite my son being in visible pain. He said tylenol should do it. my son was pale, his heart was racing and he was breathing way too fast. I would submit that same dr should have the same done and be offered only tylenol.
I'll never forget that moment before our son's third shunt surgery when a surgical resident came up to us and said, "Well, at leeast this time he's big enough to have anesthesia."
ReplyDeleteI could hardly believe what I was hearing.
Of course, no post-op pain relief was ever given either.
And then there is the pain of intubation and being on a ventilator which I believe most adults are sedated for.
At the time our son Edward was in the NICU, my step-father had just had surgery for a bleeding ulcer. The worst, most painful, part of it, he said, was having a tube down his throat all the time.
My step father was a very stoical man, not given to expressing emotion. But, when he heard about Edward's intubation, he began crying and said over and over, "That poor little baby! that poor little baby!"
As an adult, my step-father was, of course, given pain relief during his ordeal. Edward was not.
When I think of all the damage Edward suffered -- from NEC to hydrocephalus to skin necrosis, to shunt surgery to IVs, infiltrations, suctionings, and everything else...it breaks my heart.
I also know that there are concerns about the safety and efficacy of pain relievers for preemies. This creates a situation in which caregivers know that giving pain relief might damage the baby for life, but not giving pain relief (aside from the immediate cruelty of it) can also damage the baby for life.
This is one reason I feel parents should be able to opt out of NICU care in favor of comfort care for their baby at delivery -- especially at those gestations in which the pain is most severe, the treatments most invasive, and the dangers of pain relief are so high.
It just doesn't seem humane to me to subject babies (and their families) to the immediate and longterm effects of this kind of acute and chronic pain and damage. I know others feel differently, but this is how I'm feeling about it 30+ years later.
Helen wrote:
ReplyDelete. . . at those gestations in which the pain is most severe, the treatments most invasive, and the dangers of pain relief are so high.
What gestational ages are you talking about here, Helen?
Thanks
Chris and Vic
I am referring to <26 weeks, but that doesn't mean there isn't major pain, risk, and damage above that gestation, only that below 26 weeks the outcomes, complications, and treatments are so much worse.
ReplyDeleteIf I am reading the post on "Tales from the Womb" correctly, Dr. Gorden is not saying that neonates do not *feel* pain, he is saying that they do not *remember* the pain later in life, because they do not yet have the ability to create and store long term memories. I am really not sure what I believe on this. Biologically speaking, he's right. The memories shouldn't be there. But my son has some really strange phobias that could directly link to NICU experiences - I am not saying that they do link, but it would be very easy to make the correlation.
ReplyDelete'Been pondering this topic for a day or two now, and while I don't think my daughter remembered per say her horrendous medical procedures from the NICU specifically (she can't tell me because she is profoundly mentally retarded, and non-verbal). .I do remember when she came home from the NICU that she hated to be touched or picked up. You could actually see the fear in her eyes - this could only have come from 5 months of painful procedures on a daily basis. She equated being touched with being hurt. It took months for her to lose that as it was so engrained.
ReplyDeleteI think too that the Tales from the Womb comment may be more directed toward full term births where the silence, water birth, etc are extreme beliefs. .I guess I do not think that a full term, healthy delivery carries with it long lasting trauma to the child. I truly do believe that being stuck with needles for months, having surgery without anesthesia, having tubes rammed down these extremely preterm infants most definitely does have long-lasting consequences. Afterall, their little brains are developing at the most rapid rate of what was suppose to be the last trimester during this time!
Another thought I had in all this, was how we were told not to touch our girls too much as their nervous systems couldn't handle it (when they were first born). .well if they were so hyper-sensitive to loving touch, wouldln't they be hyper-sensitive to painful stimuli? How do these docs justify THAT?
I've thought about very young memory. Certainly a singular event such as birth probably wouldn't be remembered.
ReplyDeleteBut even if the memory of an infant is very short term, think about running overlap. Let's say they have three days memory. Maybe it's less, maybe more. I don't know.
Let's say they have a heel stick. That hurt, the next time they remember the pain and when the same process happens again, they are afraid.
Or maybe something in them says, that wasn't so bad and I lived, so I'll just ignore it.
Over the three days of heel sticks, their reaction pattern builds on itself. On the fourth day, they've forgotten the third day's experience, but they still have the emotional response that has been built on and continues building whether they remember why or not.
All of this while the brain is being developed.
Hence, either hyper or hypo sensitivity and ingrained behavior even though the infant actually has no memory of why they behave that way.
Sorry. I had a typo.
ReplyDelete"On the fourth day, they've forgotten the FIRST day's experience..."
future of hope said...
ReplyDelete"If I am reading the post on "Tales from the Womb" correctly, Dr. Gorden is not saying that neonates do not *feel* pain, he is saying that they do not *remember* the pain later in life, because they do not yet have the ability to create and store long term memories."
This past week I refused to sign a permission slip for my son to go to the Holocaust Museum with his 9th and 10th grade class. They studied the Holocaust the past semester.
I would not, could not, sign the permission slip. When I evaluated my underlying reasons, I found that I essentially felt very strongly that he has been through enough. He has endured enough suffering that did not make sense - that had no apparent cause until, of course, we examine what occurred in the first moments and hours and days of his life.
I instead required that he read "Man's Search for Meaning" by Victor Frankl, a Holocaust survivor.
My son may have no memories of his early experience but he DOES have an innate and sophisticated understanding of what it is all about.
And I would invite his class to explore what happens in neonatal intensive care - and if they can make any kind of connection between the detachment of the caregivers to the suffering of the neonate and the detachment of the torturers to the suffering of their captives.
I believe that this detachment, this desensitization to the pain of others, is the first step down the road to further dehumanization and atrocities.
My thoughts on this topic are all over the place. I've had a hard time making sense of them enough to be able to post them. I have been reading what everyone wrote and it's all so thought provoking.
ReplyDeleteFirst, I understand that pain management carries its own set of side effects. But, I wonder which is worse, long term pain (endured in the NICU) or complications from pain management.
Secondly, if the medical community has been able to figure out how to safely (at times) dose other meds down to preemie size, why can't they do it with pain meds?
As far as the argument that preemies cannot remember pain, I think it's being looked at almost too narrowly. Yes, biologically they may not be able to form and recall a specific memory of the pain, but chronic pain changes the body.
To Joan who wrote "I believe that this detachment, this desensitization to the pain of others, is the first step down the road to further dehumanization and atrocities."
ReplyDelete***
When I go to neonatal conferences, I see the desensitization first hand -- and, in fact, I have had to become desensitized and cynical myself to endure it.
When I bring parents of preemies with me to these conferences for the first time, they are utterly stunned by the cavalier way in which the effects of NICU treatment-- the immediate pain and the longterm outcomes -- are glossed over by the docs, who are mostly filled with smug self-congratulation for "saving" so many babies.
Neonatal professionals talk about *parents* being in denial, but you have to wonder about the kind of denial that allows NICU professionals to inflict, on a daily basis to other people's children, the painful and inherently damaging treatments involved in NICU care.
I recently spoke at an ethics conference where Anita Catlin RN, PhD, also talked about a movement among NICU nurses toward "conscientious objection" to some of the care they are asked to give on the grounds that it is inhumane. I support this.
But what I'd *really* like to see is a frank discussion with high risk parents about fetal and neonatal pain and what it means -- both in the short and long run -- before the parents agree to resuscitation and all that this brings with it. Comfort care should be offered, and supported, as an alternative for parents who do not think they can put their babies through the prolonged agony of aggressive treatment in the NICU.
I truly believe that Kellar felt pain while in the nicu, there were several times we were told by our drs that Kellar was being given medication to control his pain ( after his surgerys ).I guess I never encountered any of them saying that or believing that a preemie doesn't feel pain, he had anesthesia for his procedures and one's that didn't require total sedation he had a local anesthetic...
ReplyDeleteJoan said:
ReplyDelete"And I would invite his class to explore what happens in neonatal intensive care - and if they can make any kind of connection between the detachment of the caregivers to the suffering of the neonate and the detachment of the torturers to the suffering of their captives."
So very profound, Joan. My good friend and I have often discussed how the NICU experience was a kind of Holocaust. .in many ways. . tortuous, medical experimentation, post-traumatic stress. .
You did the right thing.
Why does the medical establishment start from the assumption that pain is NOT felt? Why not assume that even a primitive nervous system feels pain and try to prove otherwise?
ReplyDeleteThat Derbyshire chap quoted in the NYTimes article follows his logic to conclude that babies do not feel pain until 1 year. My instinct tells me that we still understand little about pain and as we learn more we will find that it is primal to our being and comes on much earlier than our current assumptions. They have yet to figure out how to truly measure pain.
It makes me sick to think of all those operations on babies without anesthesia. Did the doctors truly believe they felt no pain? Why then do babies cry?
Lea said "It makes me sick to think of all those operations on babies without anesthesia. Did the doctors truly believe they felt no pain? Why then do babies cry?"
ReplyDeleteThe NY Times article did mention that the doc who previously said that babies don't feel pain until a year old, is back pedaling on that statement.
Lea you are correct - why do they assume preemies don't feel pain rather than taking the opposite stance? It's mind-boggling. I think that there are several things going on - one touched on here in these posts already - there is often an incredible disconnect with NICU personnel - docs and nurses alike, but more so with docs. The other, is that tiny preemies are for the most part on ventilators and can't cry- the other, is that preemies often have atypical responses to stimuli, and their responses may not be interpreted as a pain response. ( remember my girls immediately falling asleep for the first 6 months after they got home if their environment became to chaotic.)
You'd think that in this world of PET scans and even EEG's that someone would have figured out how to accurately measure the preemie brain response to pain, etc.
terri w/2 said:
ReplyDelete"So very profound, Joan. My good friend and I have often discussed how the NICU experience was a kind of Holocaust. .in many ways. . tortuous, medical experimentation, post-traumatic stress."
Thanks, Terri, but I can not take credit for the thought - the connection was first suggested to me in the book "The War Against Children: How the Drugs, Programs and Theories of the Psychiatric Establishment are Threatening America's Children with a Medical 'Cure' for Violence" by Peter R. Breggin, M.D., and Ginger Ross Breggin, copyright 1994 by the authors.
As I was thinking on our discussion this week, I recalled (from reading the book a decade ago - so my memory was hazy) that the authors stated something to the effect that in the case of psychiatric experimentation - the most vulnerable in a society become the subjects - especially women, children, the poor, the racially oppressed and the mentally ill.
As an aside, who is more vulnerable than a woman in labor, disempowered in the NICU and unable to protect her even more vulnerable and speechless infant?
I pulled out the book this morning and found that I had book marked a page years ago that is also relevant to our discussion today.
Under a section entitled "An Answer to 'How Could they Do It"? - referring to the question how could ordinary people "become inured to working" in the concentration camps, Breggin states:
"If doctors (and the word "doctors is emphasized in italics) legitimatized and carried out the murders, others could more easily rationalize their own participation...The presence of physicians and other health care professionals also disguised the lethal purpose from the victims."
I do not intend to make a correlation between murder and NICU treatment.
I do want to support the notion of a connection between medical experimentation and the most vulnerable members of our society.
I also think it is important to consider, in different contexts, the power that individuals and societies turn over to physicians and the medical establishment as a basis for rationalizing their actions and accepting their own desensitization.
I also think that we should always continue to look at the bigger picture - to step outside of the way we look at something and continue to look from different perspectives.
Terri refers above to experiencing the NICU as "tortuous, medical experimentation". Those are her words, her thoughts, her experience, unfiltered by the reality or rationalizations of anyone else.
How many of us, within our culture,
and perhaps not directly experiencing the NICU, also deny Terri's reality and the experience of each of us and our children, due to accepting, without question, the authority of the medical establishment?
And I also question what it is we refer to when we refer to the "medical establishment". Is it physicians that become physicians because they truly care?
I don't think so. I think it is a bigger monster - a massive web of a flow of money that results from research, experimentation and treatments - all legitimized under the COVER of the authority and tacit acceptance and participation of physicians and the "medical establishment".
Joan
Joan,
ReplyDeleteHere is an interesting, if horrifying, bit of historical perspective on the issue.
The late Dr. William Silverman wrote the following paragraphs in an article about the development of (what he considered to be) "overtreatment" of premature newborns:
"In the mid- and late 1950s the number of persons present, and the levels of intervention in delivery rooms and in premature infant nurseries, began to escalate. This also marked the beginning of the ongoing controversy about what shall, and shall not, be considered 'overtreatment.'
"I can illustrate the abrupt change in attitude and in action by a dramatic incident that took place in a delivery room on our obstetric service. It occurred when a new chief of obstetric anesthesiology was called to be present at the delivery of an extremely small baby at about 23 weeks of gestation and weighing roughly 500 grams. The neonate did not breathe spontaneously and had no pulse. The new anesthetist asked for a scalpel, opened the chest with one stroke, and began to squeeze the heart directly as he yelled for someone to intubate the baby immediately. No one prior to this had ever dreamt of using open-heart cardiac massage for the resuscitation of the newborn. Needless to say, this incident had an electrifying effect on the crowd of open-mouthed young people in the room. This was a very loud signal indicating how far resuscitative efforts were now prepared to go. The fact that the neonate died a few hours later was dismissed as an irrelevant detail."
[Silverman WA. "Overtreatment of Neonates? A Personal Retrospective." _Pediatrics_1992;90:971-976.]
This seems to me to be right on the mark. The docs do these things because they *can,* because authority figures shock them into extreme new practices and maneuvers. No matter how revolting these acts may seem at first, habit and denial soon dulls the conscience, and, after all, every one else is doing it. The babies can't complain and the parents silently acquiesce or express outright gratitude that doctor has "done everything."
Hannah Arendt's phrase about the "banality of evil" comes to mind.
Helen Harrison
Interesting stuff, Helen.
ReplyDeleteI am also reminded of college psych courses and the Milgam study. There is volunteer "teacher" and "student" in separate rooms - each time the student answers incorrectly, the teacher is instructed to deliver an electric shock to the student. The student receives increasingly more painful shocks with each wrong answer and eventually screams in pain, but, the teacher is instructed by an authority figure to continue delivering the shocks. Most did.
There were of course no real shocks given, but the person in the "teacher" role did not know that until after the experiment. What was interesting, is that 65% of people in the teacher role continued to deliver "shocks" to the student just because the authority figure said to do so.
The experiment was done with the intention of proving how easily we are swayed and influenced by authority figures even to do very bad things to others or even when we know it is wrong.
Interestingly, what the study also proved, was that it was easier for the subjects to comply when the victim was "depersonalized or at a distance" - even, in this case in another room.
My point in all of this is, is that preemies pain is very depersonalized in the NICU as well. NICU nurses probably have more difficulty with the painful "care" given, but physicians do not seem to - probably because they are not usually the ones actually doing the hands-on care, nor are they the ones living with the results.
Terri,
ReplyDeleteI agree with everything you've said. There is also the "group-think" aspect of it all.
Dr. Silverman goes on to say this about the open chest resuscitation and the changes in thinking and practice that followed:
"It was soon clear, in the next few years, that an exciting new field of medicine was, in fact, inventing itself. The timid notion of a 'natural limit of viability' vanished.
"I want to call attention to the team-action as a significant feature of the new rescue program. "Team-think" provided a self-validating stamp of approval. Freeman Dyson has pointed out this dynamic in teams of physicists who worked on the atom bomb project. 'We did things together,' he wrote, 'that none of us would think of doing alone.' He became convinced that it is this diffusion of responsibility that allows people to put aside disturbing questions about the horrendous consequences of their acts.
"It was easy to get swept up in the exicitng developments of neonatal medicine, so long as you didn't ask too many questions about overarching goals. And, I must say, I did sweep my second thoughts under the rug. Now, as I look back at those exciting times, I am reminded of the Alice-in-Wonderland-like principle: 'If you don't know where you are going, any road will take you there'"
***
This from a man who has been called the founding father of neonatology!
Helen Harrison
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