The Corpus Callosum

Do VLBW Preemies Get PTSD?

This
is in response to a href="http://scienceblogs.com/corpuscallosum/2007/05/childhood_ptsd.php#comment-439606">comment
from a prior post.  There are a few related questions here.
Can preemies develop PTSD, can
they be labeled with PTSD, if they can get PTSD is it fundamentally the
same as it is in adults, and if it is different, should we call it
something else????

The comment was left by Stacy, the author of a blog, href="http://thepreemieexperiment.blogspot.com/">The Preemie
Experiment.  I spent a bit of time on href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi">Medline
trying to come up with a concise, direct answer.  Didn’t find
one.  

The question interests me for a number of reasons.

When I was in the third year of medical school, I spent the required
two months in Pediatrics.  I had some exposure to very low
birth-weight babies, and asked the attending, basically, “what happens
to these people when they grow up?”  The answer?


“No
one knows.”  

That would have been in 1984.  Looking quickly through
Medline, the earliest use I saw of the acronym, VLBW, occurs in 1987.
 The phrase “very low birthweight” occurs starting around
1982.  It appears that there was disagreement about the exact
definition of the term VLBW at first, being various considered 1.8 kg,
or 1.5 kg, now it appears that the most common definition is 1.25 kg or
less (2.75 pounds).  Those dates might not be exact, because I
did not spend a lot of time on the search, but it gives you a rough
historical perspective. (The farther back you go, the less complete the
database is.)

Now, the big confession.  I almost became a pediatrician.
 In fact, I did my subinternship in pediatrics, spending one
of the months on the unit for infants.  May of them had been
transferred from the neonatal ICU, so some of them had been VLBW
infants.  I asked the question a few more times, but always
got the same answer.

Fast forward to 2007.  I have had the opportunity to see a few
adults who were born prematurely, although none at a very low weight.
 I’ve also seen a few who had serious congenital heart
defects, who spent a lot of time in hospitals in their first few years
of life.  It is not a random sample, obviously, and it is not
enough of a sample for me to even try to draw any general conclusions.
 

Browsing through the literature, just looking at abstracts, I do notice
a few things.  For one, it was believed for a long time that
infants do not feel pain, or if they they do feel pain, it was believed
that it was not very important.  This has been proven to be
nonsense, but the medical community did believe it not too long ago.
 Of course they also believed that circumcision did not hurt.
 

What that tells us is that our understanding of the field is evolving,
but is not evolving very quickly.  The most pertinent article
I could find is three and a half years old:

rev="review"
href="http://www.nature.com/jp/journal/v23/n8/abs/7211010a.html">Recognizing
the Potential Effect of Stress and Trauma on Premature Infants in the
NICU: How are Outcomes Affected?

Dianne I Maroney

Abstract

Extensive research of the long-term outcomes of premature infants has
shown significant risk for emotional, behavioral, and psychological
problems. Chronic stress and trauma have not been researched
specifically in this population, however, studies of the
neurobiological impact of traumatic stress on infants and children in
the general population show noteworthy parallels in symptomotology.
Careful consideration should be given to practitioner caregiving,
parent education, future research, assessment, and interventions while
being mindful of the impact that chronic stress and trauma may have on
the developing brain of the premature infant.

Journal of Perinatology (2003) 23, 679-683.
doi:10.1038/sj.jp.7211010


Unfortunately, you need subscriber or academic access to read the whole
thing.  It does tell us that, 3.5 years ago, there still was a
paucity of research on the subject.  Again, I did not spend a
lot of time searching, but I am pretty sure that if there were several
more recent articles, I would have found one of them.

Does Dr. Maroney tell us anything specifically about psychiatric
outcomes?  Yes:

We
are also developing a better understanding of the greater risk that
premature infants have of developing psychological, emotional, and
behavioral disturbances. One study carried out by Botting et al.
looking specifically at psychiatric outcomes in very low birthweight
infants (VLBW, less than 1250 g at birth) at age 12 found these former
premature infants to be ‘‘more vulnerable to
psychiatric sequelae.’’ This study showed a
significantly greater risk of attention-deficit/
hyperactivity disorder (ADHD), generalized anxiety, and symptoms of
depression. In all, 28% displayed some type of psychiatric disorder
compared to nine percent of their peers.


This, however, does not tell us what we really want to know.
 Assuming, that is, that we specifically want to know whether
VLBW kids are at risk for developing PTSD.  However, Dr.
Maroney points out that that might not be the right question.
 In fact, it probably is not:

However,
using an exclusive diagnosis of PTSD when diagnosing and treating
children with trauma symptoms is not recommended because most children
exposed to traumatic events never develop PTSD. Understanding the
long-term effects of trauma without committing specifically to a PTSD
diagnosis is even more important, because traumatized children who do
not fit the criteria for PTSD often have as many or more overall
problems than those who do fit the criteria.


This, incidentally, points out one of the big pitfalls in interpreting
psychiatric studies.  The vast majority of studies use strict
diagnostic criteria for inclusion and exclusion of the patient
population.  But that often is not what is clinically
relevant
.

What I care about is this: does the person have a significant problem,
and is there some intervention that is appropriate and worthwhile to
provide?  Whether the problem has a fancy name, is irrelevant.
 

Another pitfall: making assumptions about what can and cannot happen,
leading to incorrect conclusions.  

Over the years, I have become something of a causality nihilist,
meaning that I am increasingly reluctant to think it terms of cause and
effect when it comes to mental health/mental illness.  What I
want to do, is describe the problem, and figure out
what (if anything) to do about it.  The cause of the problem
is important only insofar as it 1) gives a clue about the appropriate
intervention, and 2) guides the interview process, by giving the
diagnostician some ideas about what questions to ask next.  

And, the question of whether a given intervention is appropriate or
not, is determined only by empirical validation.  That is, you
test the intervention to see if it works.  Knowing the cause,
or having an hypothesis about the cause, may help guide research into
what interventions to try.  So it is not irrelevant in a
research setting.  But in a clinical setting, it can be
terribly misleading to link cause –> effect –>
appropriate treatment.  

Dr. Maroney, intentionally or not, addresses this very problem:

For
many years, conventional wisdom declared that infants and small
children could not cognitively remember chronic stress or trauma. As a
result, professionals assumed that children would not experience
long-term problems from traumatic incidents that occurred before their
cognitive memory was functioning (around the age of 3). In the past
decade, researchers have made tremendous strides in negating this
belief based on their improved understanding of the long-term
physiological impact that chronic stress, as well as traumatic
incidents, have on the developing brain.


“Conventional wisdom” told us that memory had something to do with the
development of posttraumatic symptomatology (as distinct from
Posttraumatic Stress Disorder).  Perhaps it does have something
to do with it, but it is not the entire story.  It probably
has something to do with the patient-specific manifestations of the
problem, but it is not necessarily an essential part of the cause
of the problem.
 
In summary, I do think neonatal ICU experiences, and the inevitable
cascade of subsequent medical interventions, can be correlated with
posttraumatic symptoms in people.  I think it is likely, in
fact.  So far I am not aware of definitive research on the
subject.  I can say that it is important to think critically
about the subject, because it is much more complex than it may seem.

Comments

  1. #1 daedalus2u
    May 23, 2007

    I am working on a related issue, the effects of low basal NO on neurodevelopment in utero and early childhood.

    There are a number of effects of stress in utero and early childhood. Autism spectrum disorders are (I think) a neurological response to stress in utero, mediated by low NO. I suspect that there are other neurological effects of stress in utero. Stress is well known to program the adult physiology of multiple organs (the Barker hypothesis), it would be surprising if it did not affect the most important organ, the brain.

    Stress is a low NO state. NO is a pleiotropic signaling molecule utilized in thousands of pathways including pathways involved in epigenetic programming.

    The main use of differential diagnosis is for differential treatment. Premature infants may not have “PTSD”, as defined by what ever diagnostic instrument is being used, and in any case, precisely what differential treatment would be most beneficial (for what ever it is they do have) is unknown.

    I suspect that basal NO levels for premature infants are very low, and that this does affect their neurodevelopment. Precisely how is extremely complex, and is no doubt idiosyncratic. I suspect that raising NO levels would be beneficial, how much? A good question. I suspect to a level where methemoglobin is comfortably tolerable, perhaps 15% or so. But it will be a while before such “heroic” levels can be tested. I do think that inhaled NO will not be beneficial except for its well known effects on pulmonary hypertension, and won’t have any of the systemic NO effects that I am thinking about.

    I suspect, invoking the placebo effect with love and affection is an extremely important aspect of treatment. Are there pharmacological interventions that might help? That is unkown.

  2. #2 Connie
    October 3, 2007

    Thank you for your post. As the mother of a 7 year old boy who started off at 1 lb. 6 oz., I am grateful that someone is finally addressing this. The only “diagnosis” we have been able to obtain was a hodge-podge. “well defined SID and ODD, and symptoms insufficient for diagnosis of… Aspurger’s, bi-polar, and ADHD”. His violence and aggression have warped our entire family and effected our marriage. There has been no help from mental health services in our state because the child is intelligent. No educational delays equals no help. I have just begun this “PTSD” leg of our journey.
    THanks again for taking time to post. These kids need help.

  3. #3 Lauren
    November 20, 2007

    Thank you so much for your post. I absolutely believe this to be true. I am a mother of a 6 year old boy born at 24 weeks, with a very low birth weight of only 454 grams (which is equal to exactly 1 pound). I am also a survivor of past trauma (prior to my son’s birth) and feel that I have a first-hand understanding of the body’s stress responses and how this might relate to this topic.

    My son’s teacher recently asked me if he was afraid to wash his hands at home. A few weeks ago, the water had come out of the tap a bit warmer than usual, and my son perceived this as a threat, fearing he would be burned (he is also sensitive to temperature changes, due to his tactile development being effected by his early birth, so ‘warm’ water to us might feel ‘hot’ to him).

    I answered with this response:

    His reaction does not surprise me, but it’s so sad. Even though he didn’t actually get burned, it still scared him and made him feel threatened and afraid, which is the important part. His perception of the stimuli, not the
    reality that we see. If he perceives a threat, he is going to react to it, and in a much more complicated way than a typical reaction to a threat.

    I think he (and any child, adult or animal) who has been through long-term stress and trauma involving severe pain and fear, and especially a sense of being out of control, causes the brain and body to react with its built-in survivor mechanisms (we know it as “fight or flight response”).

    His reaction is not only psychological, or something that we can “just talk him out of.” It is a physical, chemical, sub-conscious, auto-response. He’s automatically going into self-preservation mode, taking cues from his brain, which takes its cues from whatever he sees as “threats”
    (even though it wasn’t a real threat, he perceived it as one, so he reacted to it accordingly). His perception is his reality, emotionally, mentally, and then finally physically. This might also explain some of his behaviors (it would be great to discuss this further with the child psychologist).

    When the external resources are perceived to be “dangerous,” his brain kicks off a burst of adrenalin and other chemicals to prepare for defense. After long-term stress, it has been shown that the brain actually develops differently. So, it’s harder to “talk him down” from his “adrenalin rush” once it’s been set off. Meaning, it might take some time for him to calm down, probably more than usual. He still needs to try to “face his fears” (and obviously is going to have to learn to wash his hands on his own).

    I do think that it helps to talk to him, though. Explain to him that the thing he sees as a real threat really isn’t actually going to hurt him. So basically what you did was the best way to work him through this. Show him the cold water, let him feel it, explain that the hot water won’t
    come out and hurt him, and that you are there to make sure this won’t happen (he’ll be skeptical but after a while he may believe it to be true).

    He has also been acting afraid to go to the bathroom alone at home. Sometimes he is afraid of the dark and of being in his room alone. This has improved a bit, though. We’ve been doing the same kind of explaining to him, even though it may seem repetitive to us, he needs that repetitive, constant reassurance that things will be alright and he won’t be hurt. Even though there will probably always be a part of him that “doesn’t believe” that to be true (he’ll always have a hair-trigger response to stressful situations) we’ll just always counter-act that as much as possible with patience and logic, by explaining to him that he is okay and that he won’t be hurt.

    These kids do need help. And it should start with us. We need to put our frustrations aside as much as possible (take time away to heal ourselves too, of course, but when we’re around the child in need). These kids need patience, almost beyond measure, and love, love, love, and understanding. They also need a calm and safe environment (as much as possible, giving our chaotic modern society).

    As parents, we need to know that this is a huge challenge given to us. And it’s okay for us to feel overwhelmed and frustrated and afraid. That’s why we have groups and discussion boards. But our kids shouldn’t see this side. They need to feel loved and protected by us.

    I hope this helps. Good luck to everyone.

  4. #4 Karen
    September 14, 2009

    I was a preemie born at 25 weeks back in 1986. I weighed 1 lb 13oz at birth and my parents were told I had no chance of survival. I beat the odds and managed to overcome every obstical unscathed. I also suffered physical abuse by my mother as well as sexual abuse by her father. I was able to cope with all of this trama and remain relatively unscathed (in terms of my prematurity). I have no brain damage and maintained a 3.4 qpa at a very good private university in the area however my PTSD was recently triggered by my last job working at a psych hospital that had very poor management and treatment of both staff and patients. My psychologist believes that their treatment of me was a result of the triggering of the PTSD symptoms. I also do not have family or other social support to rely on. According to NIMH report of PTSD I have all the symptoms except for hyperarousal. I am very intersted in how preemies may be affected as adults. If anyone has any questions for me our would like to discuss my situation personally I’d be happy to do so. I can be contacted through my e-mail at karen.wood257@gmail.com with any questions about any of the above that I’ve mentioned or any other questions that anyone may have about my situation. I was a very lucky child not to have any developmental delays other than those that related to my due date (for example I was 3 months late in developmental milestones until I reached one year of age and by then I had caught up). I’ve had no complications since then but now the PTSD has reared its ugly head and I’m trying to do my best to work through all of that with a combination of pyschological and psychiatric treatment until I can get to the root of the problem and resolve all of my issues. Again I’m very open about my experiences, they’ve made me who I am today so feel free to contact me at any time no matter what the question. I’m intereted to follow this to see what comes of this research and investigation. Thanks for all of the information and sharing on the subject.

  5. #5 Katie
    May 11, 2010

    I was born at 30 weeks, via forceps due to breathing distress, weighing 2lbs 13oz in 1970. My birth traumatised me on many levels, as well as my mother, from whom I was totally separated for the first 3 weeks of my life – no physical contact AT ALL.

    I am 40 now, and diagnosed with longstanding depression, as well as a mix of anxiety and other symptoms as a result of my past for which I am in treatment.

    What complicates the picture in adult research is later traumas and abuse – in my case, parental domestic violence, emotional abuse at home, and protracted school bullying.

    What we do know is that my early experience set me as much more vulnerable in so many ways. This enhanced sensitivity is a blessing, as well as a curse, as can be imagined.

  6. #6 Lonely5
    April 26, 2012

    I’m very curious to know how being born premature affects you as an adult. I was born in the early 80′s. My mom is Hispanic so back then they really didn’t have interpreters. She says she’s not sure how preemie I was. The only thing I know I was born weighing 2000 grams. With that said now I suffer from anxiety, depression and OCD. Some of this may be due to my up bringing. Verbal and physical abuse as well as being molested by my uncle. I also have a scar on my forehead. My mom says the doctors placed some type of needle or something. Till this day I don’t know the cause. I hope to find out more. If any one knows any info I’d appreciate it