Infant Surgery Without Anesthesia

Anyone now 23 years or older who had major surgery as a baby is at risk for chronic posttraumatic illness because the surgery was probably done without anesthesia, which was the custom in most hospitals prior to 1987. Abdominal surgery for pyloric stenosis and chest surgery for congenital heart problems were the most common forms of infant surgery. Together these surgeries were required for about 8 cases per 1000 births. A rough estimate of the number of survivors during the single year of 1987 (3,829,000 live births) is 30,600. We do not know what proportion of these survivors is now suffering with posttraumatic symptoms but considering the severity of the pain and the helplessness of the infant we would expect that the majority of these infants were traumatized.

Paralyzed, Wide Awake, No Pain Control

Those major surgeries required that the infant have artificial respiration during the surgery. The baby was given a curare drug for total paralysis while the respirator tube was inserted into the windpipe and the paralysis was maintained throughout the surgery. The paralyzed baby was wide awake with no pain control. Imagine what it must have been like for the infant: unable to lift a finger; unable to move away from the searing pain of the scalpel; the sensation of being turned inside-out as the heart or intestines are grasped; and the overwhelming pain. People that have survived these early traumatic experiences usually cannot recall them verbally while they cannot forget them nonverbally.

Life-Long Symptoms

The symptom picture of the survivors is broader than the usual picture for posttraumatic stress disorder. Adult survivors report life-long symptoms of anxiety (constant nervousness and spells of terror or panic), hostility (temper outbursts and urges to smash or break things), depression, self-consciousness, distrust of others, and a high vulnerability to stress. The life-long aspect of these symptoms leads to the faulty clinical perception that they are personality disorders instead of recognizing them as persisting reactions first elicited by the brutal surgery. That recognition opens the way to curative treatment of the adult survivor.

Infants Feel Pain, Remember Pain

We know today that infants feel pain and they remember the pain. That memory is not verbally coded and therefore is not conscious. It has not been mitigated by time or by life experience. It festers in the nonverbal mind and threatens to overwhelm the person. The unfortunate individual is blind to the origin of the symptoms and usually attributes them to present causes such as some physical or mental illness. Those survivors of infant surgery without anesthesia that do seek treatment might do so because of baffling symptoms of pain and fear or dissociative symptoms, or maybe at the urging of a parent who had seen the original damage but only later learned that there was no pain control for the baby during surgery.

Cure Is Possible

The posttraumatic syndrome of infant surgical trauma is not generally recognized. There are individual therapists using medical hypnosis that understand preverbal trauma and use hypnotic age regression to bring the original experience to consciousness. There is one specialized trauma therapy program, Intensive Trauma Therapy, Inc., (ITT) in Morgantown, West Virginia that has treated this particular type of trauma for 4 years. ITT developed a unique approach, which is not the traditional talk therapy but uses other methods to access parts of the brain that store the imprint of the trauma. It is an outpatient treatment delivered in a marathon format, which allows individuals from distant places to be treated at the center in one or two weeks.

Are My Symptoms Due To Surgical Trauma?

How can one determine if present symptoms are due to surgery during infancy? Of course there is no blood test for this. The usual clinical diagnosis of PTSD is not enough because the present symptoms might be described by other diagnoses such as panic disorder or major depression. However, in the presence of chronic symptoms and a history of surgery during infancy, a trial of treatment may be wise. Answers to the following questions and discussion with a knowledgeable therapist can help one decide.

1)    Did you have an infant operation before 1987? If so, what was it?
2) How old were you then and how old are you now?
3) Do you feel it has affected you over the course of your life constantly, only at times, or not at all?
4) How would you describe your symptoms or if no evident symptoms then your quality of life in general?
5) Had you connected the operation with your symptoms and if so how did you make that determination?
6) How long have you been aware of this connection? If not aware have you suspected there was something deeper at work in your life that you did not understand?
7) Have you sought treatment and if so what kind? How did you feel about its effectiveness?
8) Was the operation ever discussed with you, as a child, as an adult? What importance did your parents or caregivers place on its possible long-term effects if any?
9) Have you ever considered suicide?
10) Do you believe your life can improve with proper treatment?

Comments on the effects of infant surgery might bring up issues about the effects of other traumatic experiences during the preverbal period of life, from conception to age three.

Louis Tinnin, MD

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About ltinnin

I am a Professor Emeritus at West Virginia University Medical School with a primary interest in the treatment of trauma-related conditions. I am currently a psychiatric consultant for Intensive Trauma Therapy in Morgantown, West Virginia.
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75 Responses to Infant Surgery Without Anesthesia

  1. terry monell says:

    I am thrilled to see such an important step being taken by ITT. This blog is one of the first real advances in bringing awareness to a large population in need. People who are unable to make a connection between between their current psychological state and the horrifying circumstance of their infant surgery performed without anesthesia, remain confused by a lifetime of endless reactivity. I am confident ITT’s unique treatment program can make an enormous impact in any individual’s recovery. My perspective is of both the infant having undergone medical trauma and the personal expereince of ITT as a salvation in its sensitive approach to understanding the nature of pre-verbal trauma and its life long effect.

  2. Sheri Oz says:

    Thank-you for this important information. From now on, with every new client over the age of 23, I’m going to be asking about infant surgery at intake and advising my trainees to do so also. Well, even with under 23 years of age, as one never knows how long infant surgery was/is performed without anaesthesia in different parts of the world.

  3. ltinnin says:

    Terry, your “lifetime of endless reactivity” due to the infant trauma is similar to the pattern of pain-associated disability syndrome, or PADS, described by Dr. Peter Gott recently in his regular newspaper column. PADS is defined as chronic pain that causes more severe restrictions than what the presumed underlying condition would cause. Dr Gott referred to a study of 40 patients that related PADS to adverse childhood events such as “early pain experiences.” This may be one example of chronic disabling symptoms due to the nonverbal painful memory of infant surgery. There are many such examples and so many ways that preverbal trauma results in a life of reactivity.

    Sheri Oz, a well-known Israeli trauma therapist, decided that she must routinely ask every new client about infant surgery, no matter their age, and I agree that surgical trauma can occur independently of anesthesia and even at any age. Sheri Oz and Sarah-Jane Ogiers wrote Overcoming Childhood Sexual Trauma: A Guide to Breaking Through the Wall of Fear for Practitioners and Survivors (2006) (Amazon.com).

  4. What Happens To Survivors Of Infant Surgery Without Anesthesia?
    I was asked if a survivor of infant surgery without anesthesia might develop schizophrenia as result or the trauma. Many people that I respect believe that genetic heritage is not a sufficient explanation for schizophrenia and that early childhood experience is more important to the understanding and treatment of the condition. If that is true I would expect that the incidence of diagnosed schizophrenia would be increased in survivors of infant surgical trauma. I did not see this in my practice but that is not surprising since my practice was a specialized trauma therapy program and people with schizophrenia are not referred for trauma therapy. Many of the patients referred for chronic, treatment-resistant symptoms had been diagnosed with schizophrenia in their paste but my diagnosis was usually posttraumatic stress disorder or dissociative disorder. I do find that the earliest childhood traumas produce the most severe adult emotional and physical symptoms.

    The Answer Begins With The Numbers
    The Adverse Childhood Experiences Study is a major research study that compares current adult health status to childhood experiences decades earlier. This study of 17,421 cases reported in 1998 was done as a collaboration project by the Centers for Disease Control and Prevention (CDC) and the Kaiser Permanente’s Department of Preventive Medicine in San Diego, California. The study revealed a powerful relation between the emotional experiences of children and their adult emotional health, physical health, and the major causes of mortality. It would probably be possible to correlate the medical history of infant surgery before 1987 to current adult health status using this same approach.

    A Simple Solution, Why Hasn’t It Been Done?
    It used to be that medical science taught that infants don’t feel pain and don’t remember it. Even today many dismiss the idea that a trauma in infancy would affect a person in adulthood. Psychotherapists do not consider curative treatment for infant trauma possible since they believe that people cannot report preverbal experience. The problem is that, by and large, an effective treatment for infant trauma has not been recognized and thus there is no motivation for systematic studies. Perhaps a few studies of the outcome of trauma therapy for survivors of infant surgery will generate interest.

    • dean says:

      Dear Dr. Tinnin
      Is it common for people like us (survivors of infant surgery …most likely without anesthesia ie. pyloric stenosis) to feel guilty when we tell someone that we have PTSD? I feel that PTSD is so linked to combat victims and I am well aware that these guys are potentially war heros or at worst, victims of trying to do the right thing for their country (regardless if I agree with the political slight of hand that sent them there). It is very hard for me to even link what I went through with what they have been through and are still going through. I didn’t do anything heroic. All I did was survive! I am quite aware that PTSD is a much larger psychological category, but I can’t shake this feeling that it is a category reserved for veterans or somebody doing something similarly heroic such as a firefighter, police etc; that I feel guilty when I say that I am suffering from PTSD. I am also acutely aware that even they have a tough time saying that they have PTSD because of intense social preassure and potential discharge issues even with all the laborious work that veterans groups have gone through to prove that this unseen injury is recognized as valid for these guys and gals. Knowing all this only makes me feel more like I don’t belong to that classification like PTSD. I also feel that I can see it in the eyes of people when I tell them that I suffer from PTSD. I feel like they are thinking …”so what did you do to fit into such a heroic category”?
      I have been searching for an answer most of my life for an answer to the strange feelings and actions that I have exhibited throughout my life when confronted with certain situations/ pressures/triggers. It is so hard for me to say that I have PTSD that I am now concerned that I jump at any other classification like PADS that was recently mentioned on this board to fill this void. And after reading that PADS is a problem that usually only effects teens, I feel that I most likely don’t fit into that classification either (being 56 years old). Even though I have had problems with digestion most of my life and can only sleep on one side because of reflux issues when sleeping on the other side. And I also believe that the insomnia created by this has lowered my pain threshold along with a bad operation 20 years ago which I also believe precipitated a lowering of my pain tollerance. I have many of the markers but I am not a teen.
      I think I am beginning to see why the inability to speak when we had this trauma is such a problem. Because I am deffinately having problems putting this into words.
      So…
      Is it common for some/many of us to feel this way (unable to say/believe/convince others that we have PTSD)?
      Is this why we feel so disassociated? How difficult a problem is this disassociation?
      Is the fact that we did not have a language at the time of the operation make this problem so difficult to describe or solve?
      Thanks so much if you have time to reply.
      Dean

  5. terry monell says:

    PADS as an example of the body memory trying to express itself is compelling. I have experienced much chronic pain, including blinding, doubled over abdominal pain that no doctor could diagnose just like Dr. Gott’s example. By the time they found gallstones and removed the organ it had been roughly 30 years (6-36).

    Attending the 2010 IASTD Conference (International Association for the Study of Trauma and Dissociation), I noted that not one workshop out of 150, dealt with medical trauma. Many doctors with whom I have spoken are at a loss to suggest treatment much as you describe. Since the DSM-IV has not legitimized it in their PTSD causative list and therefore prescribed a protocol, doctors without familiarity in this area simply do not recognize it as an obvious catalyst for trauma, shock, PTSD and resultant long-term symptoms. I can easily imagine that in many psychological disorders including schizophrenia, if early life circumstances were looked into and understood, since the majority of adult psychiatrists and psychologists are not aware of this phenomenon, infant/childhood surgery may well play a part in many cases.

    Changing long term, life diminishing coping strategies is not easy even with a lot of awareness and consistent effort but I believe it can be done in time, supported by the right environment. We are all motivated to survive unburdened by physical and mental pain but knowing that that possibility exists is the key.

    The parents of both Ted Kaczynski and Jeffrey Dalmer, when interviewed by Dr. Peter Levine, reported that they saw extreme changes in their son’s behavior, which according to timing they attributed to their early childhood surgeries. One can only wonder what would have been if these children had received interventions.

    • dean says:

      To Terry Monells post on jan 10 2011
      I must have missed this the first time through.
      Wow now this is a very interesting post. So Jeffery Dalmer and Ted Kaczynski both had extreme changes in their behavior after childhood operations? Do you know at what age and what the operations were? I find this very telling and very sad.
      Although the above paragraph regarding the changes in famous serial killers grabs headlines as it grabbed my attention, the thing that I found most interesting in your post to my personal journey was the link (that I’m sure I will be doing a lot of reading on in the next week or so) regarding overactive pain reaction in children that have had traumatic childhood surgeries that you spoke of called PADS. This is deffinately how my body reacts whenever any surgery is done to me. I take forever to heal or have pain symptoms much larger than “any of my other patients” the doctors always say. I always thought that I wasn’t supposed to survive because I had an overactive pain pathway system and this made sense in a Darwinian sense to me. I rationalized this was why Pyloric Stenosis tried to make me self destruct. I know this sounds rather moribund but Darwin himself was amazed at the cold way in which natural selection worked. But when I discovered this site and others like it like Wendys and Freds I now no longer feel that way (by the way).
      Also your comment about the lack of recognition of a link between PTSD and childhood trauma from a major childhood surgery not being in the DSM-IV also didn’t surprise me either. What would you expect from a book that recognized homosexuality as a treatable aberrant behavior in an earlier version? And if they did recognize it, it might open the flood gates for the insurance companies to belly up and have to pay to treat the PTSD in us infants that have suffered at all of the bad decisions made by the medical community regarding pain sensations in infants under 18 months. Absurd! Freud himself said that the memories that have the greatest impact on us are the memories from birth to 5 years old. He did not say 18 months to 5 years old! And he is the founder and father of “all” psychoanalysis, and no matter what you think of Freud…he was right about a lot of things.
      So how do you think we go about getting this obvious PTSD catalyst in the DSM-V? I would like to help get it there. Because these people who made the decision that children under 18 months didn’t feel pain were just plain wrong…and they need to have the guts to admit it!
      Thanks for the information ..and nuff said for now.
      Dean

  6. Wendy says:

    This is incredible information. I have been weeping as I read this blog. I have been writing a blog, http://myincision.wordpress.com, for two years about this very subject. I had an operation for pyloric stenosis in 1952 when I was 26 days old. In my lifetime, I’ve experienced depression, suicidal feelings, panic attacks, extreme sensitivity to stress, and uncontrollable rage. I’ve worked with these feelings in therapy and came to some peace in my early thirties as I realized that I needed to cry about the effect of this early operation on my life and the life of my family. A few years ago (I’m 58 now), I realized that I still have PTSD from this early infant trauma. In Middendorf Breath Work, through Jeurg Roffler and the Breath Institute in Berkeley, California, I became aware of how deeply the infant surgery affected me. In writing a manuscript, which I’m now trying to get published, I chronicle the journey of the early surgery, my attempts to heal, and my shocking discovery a few years ago that I probably did not receive anesthesia. This discovery was a great revelation, for I knew that this was the source of my suffering and anxiety. I am very interested in the work that you do and will be researching it further. Thank you so much for bringing this issue to the public and for helping people overcome the effects of infant surgery without anesthesia. Thank you so much for discussing it and bringing professional legitimacy to the topic.

    • deon says:

      Hello Wendy …Your story has really touched a nerve in me and i hope that over time i may be able to come to some peaceful resolution to this nightmare. I too had pyloric stenosis in 1957 when i was born. My situation was compounded by the fact the my parents had recently entered the Christian Science church ( just say no to doctors as you may know ) because my mother had gone thru a divorce and her mother was of the christian science faith and she was hoping for answers. Well i don’t know if she got any but not only do i not now if she got answers it was like pulling teeth ( without anesthetic…excuse the pun…intended) to get her to tell me the story of how i was almost dead when she finally took me to a doctor ( not telling her mother ) and demanded he solve the problem of why i was so dehydrated and lifeless. To add insult to injury i am sure now that my operation was given without anesthetic and was very painful and frightening. I still have nightmares of being held down with surgical lights over me and pain…tremendous pain. I have anger issues because my older brother used to love to kneel on my shoulders and pound on my chest until i cried. In the 70s when people were experimenting with LSD , my trips were filled with people shinning bright lights in my face and stabing me with knives…now i may knw why…i guess thats the max allowed of my post …but thanks for your insight into my problem and i hope i can work them out with the help of your site and you suggestions…thanks again for the info…i alwas knew it had to do with my childhood operation…more later ..Deon

      • deon says:

        I just wanted to add that these nightmares have never left me. I have one or two a month and they are especially prevalent when under great stress which seem logical to me. I have a degree in psychology (which was more to understand why i seemed so different) and one in computer science which is where i made my living until digital computer corporation collapsed. I have had years of substance abuse related to pain and i assume it is also related to the painful childhood operation trauma. I am very fatalistic and sarcastic about the future. Is this a common attribute in people who have had this barbaric operation. I do not trust doctors to say the least. And i experience great pain whenever i do have operations. Such as having a tooth pulled. Is this also common in people like us? I just discovered your/this blog yesterday 4/28/2013 and it has filled me with great hope and anxiousness. Is this also normal. Thank you again for validating what i have felt deep inside for decades. No one in my parental family belives that this is possible and that it is all in my imagination…esp my sadistic brother…is this also normal? Thats all for now …i dont know how much of my issues people are inerested in reading…but it means a lot to me! Deon

      • Wendy says:

        So great to hear from you. I’m glad that my Comment on Dr. Tinnin’s blog has helped shed some light. I relate with so much of what you are talking about, especially the bright lights and knives. As a teen, I was in a gang and carried my switchblade everywhere. I never used it to hurt anyone, but I felt safe clutching it in my pocket. In that tumultuous teen time, I needed to be in control in some way. With regard to the lights, check out my post “The PTSD Moment I Never Had,” in which I deal with one of those surgical light flashbacks. You are welcome to email me through my blog (wendy@restoryyourlife.com or comment on my blog http://www.restoryyourlife.com/blog. I moved all my material from myincision.wordpress.com to the restory blog.) I hope we get a chance to ‘talk’ more. Did you hear about Dr. Tinnin’s new book, written with his colleague Dr. Linda Gantt, The Instinctual Trauma Response & Dual-Brain Dynamics. It’s only $20 on Amazon. It’s a life-changer. SO much makes sense after reading their work.

      • Wendy says:

        Deon, about reading my blog and feeling hope and anxiety–very normal. And, yes, all my life my family told me that I had no memory of the operation, but they suffered because they had to cope with all the stress! Their anger caused me a lot of guilt and shame growing up. My claiming MY story is THE most important accomplishment of my life to date. Great to be in communication with you!

  7. Fred says:

    This first blog was a Godsend for me, as I’ve written elsewhere. As a “survivor” of infant surgery, my search to connect some of the enigmas in my life has become easier and far more satisfying – thanks to the internet. Your openness in sharing your experience gleaned from a lifetime in medicine and teaching, together with the blogs of those who have started sharing and exploring their personal battles with mystery ogres – this fruitful blend will certainly help reduce the silence and darkness around the unusual kind of trauma that can arise from infant surgery.

  8. Pingback: Ah ha! So that’s it then! « Stories from the Survivors of early Surgery

  9. Pingback: Doctor Starts Blog about Infant Surgery Without Anesthesia « My Incision Blog

  10. What is the connection between infant pain and eye movements? I was operated on for pyloric stenosis at 26 days old and my abdomen was opened. In working with a healer and thinking about the energetics of the scalpel, my eyes locked into a rapid back and forth movement that I found hard to stop. What is the connection between eye movements and trauma?

    • Hi Wendy,
      This blog really was a godsend for me, as I found answers I have been looking for all my life. Maybe I can help you find the answer to your question. You may want to check out EMDR founder Francine Shapiro, who discovered that rapid eye movements were helpful in healing severe trauma. Het EMDR method has proven verey effective, although up to now no-one really understands why. Maybe you found out for yourself how to heal yourself.
      All the best,
      Jeannette Rijks

      • Hi Jeannette, Thank you so much for responding to my question. Several people whom I know and respect have suggested that I do EMDR. I would like to do this. I think it would help and you are one more voice urging me in the right direction. I have healed myself in many ways, but I am always open to help for I continue to heal every day. I’d love to hear more personally how EMDR worked for you if you ever wanted to share your experience. My personal contact info is on my blog http://mycision.Wordpress.com. Again, MANY thanks for caring enough to respond.

    • dean says:

      Hello Wendy …I don’t have any scientific facts about this subject but I have wondered if there is a connection also. I would imagine if we were awake when we operated on we were starring at the scalpels every movement… in other words our eyes were riveted on every move of the scalpel and the doctors and nurses movements around us. Now it is possable that our eyes were taped shut but our eyes would still dart towards every touch or cut…and I could imagine that is how the eye movement could become forever linked to these feelings. So I don’t know if I’m adding any new data to what you have already figured out but my own personal feelings are that they are very strongly connected. Like as in a stimulas responce kind of connection … At first the knife or touches caused the eye movements now…the eye movements cause the pain/memory and pain response. I could deffinatey relate to this because I am very visual and this is how “my” mind works. Also REM sleep is when our bodies heal and regenerate …It is also when we have our most visual dreams. I believe there could be a definite connection because you are trying to heal while in REM and your eyes are moving very fast and all over the place during REM sleep. I have no scientific proof of this but i can see a logical conection. This is why I believe I wake up alot in REM sleep because I am reliving that hoific childhood memory. Just my 2 cents on the subject. Deon/Dean

      • Wendy says:

        Thank you, Deon. I so appreciate what you said about an infant’s eyes following the touch of the scalpel, even if his/her eyes are taped shut. You’ve given me more understanding about what may have happened to me.

  11. Cindy Reeves says:

    Dr. Tinnin,

    My son was born in 1988 with a diaphragmatic hernia. He has multiple operations and ECMO, prior to coming home when he was 2 months old. His age doesn’t fall within the age-range for surgery without anesthesia, but he has most of the symptoms described in your column. He has been to rehab twice for substance-abuse, but to no avail. Is it at all possible that he might suffer from PTSD, even though his surgery’s were most likely performed under anesthesia?

    • ltinnin says:

      Yes, it is possible, Cindy. Despite the clinical and experimental proof that infants feel pain and remember it, surgeons remained very cautious and under treated the patients for pain, not realizing the long-term consequences of delayed and chronic PTSD. Your son may well have been traumatized and his substance abuse may be driven by his body memory of the trauma. When someone comes to us with such symptoms we treat and retire the preverbal (up to 3 years) trauma first, particularly when there is a history of surgery with or without anesthesia. Your son could call and talk to the experts at the Intensive Trauma Therapy Clinic at Morgantown, West Virginia, 304-291-2912. The web site is http://www.traumatherapy.us.

  12. Shelly Beach says:

    Hello, Dr. Tinnin,

    Both of my children had surgeries for tubes in their ears prior to 1980. I don’t recall if they had anesthesia or not but had always assumed they had. My daughter also had invasive procedures during the first five years of life, as she was born with an extra ureter on her right side. Symptoms of PTSD triggered as a young adult when she responded to the Indonesian tsunami. Is it likely that my children were the recipients of surgery without anesthesia?

    • ltinnin says:

      I know little about inserting tubes through the eardrums to drain infections of the middle ear. I have not observed the procedure either in patients or my own children or grandchildren, nor have I processed that as a trauma with anyone. My guess is that a doctor would be more inclined to use a few drops of lidocaine as a local anesthetic for the ear tube procedure. Your daughter’s invasive abdominal surgery carried the risk of delayed PTSD if she was not given pain control but even if she was anesthetized some risk remained as it does for any invasive medical procedure. I believe that the younger the child, the greater the risk.

      The use of paralytic drugs for major surgery makes the actual tissue repair safer but the instinctual freeze state that occurs increases the risk of PTSD in children and adults independently of pain control. I hope the day will come when a widely available prophylactic measure to bring closure to the unconscious traumatic memory can be used routinely to prevent delayed PTSD.

  13. Mrs Sioned Dolan says:

    Hi Dr Tinnin. Thanks you for your brilliant research and information on this blog. My brother was treated for pyloric stenosis as a baby and after reading the symptoms due to surgical trauma my brother has lived them all, in fact in his words “lives a life of living hell” and doesn’t feel ‘connected to the world around him. After being diagnosed for clinical depression a number of years ago he bravely decided to refuse anti deppresants as he felt they wouldn’t help him, and has continued since then to manage his symptoms himself (excercise, diet, no alcohol, less stress etc). He has felt for a while that depression wasn’t the root cause of his unhappiness, but was a symptom of something bigger. Something amazing happened last summer, which gave the whole family hope – he discovered your research and the clinic! His whole life and the way he acts suddenly made sense (I could hug you I really could). Anyway, since then he’s been doing more research and has infact contacted you to find out more. My part in this, as his sister who loves him very much, I basically am trying to find the funds to get him to the clinic from the uk for treatment. I am also going to contact the UK’s National Health Service to ask if they can help, after all it was a precedure that caused my brother to live his life in permanent detachment. I know from this blog and other related information that this research is not widely known within the medical proffession, but do you know how well known it is in the uk, especially if it’s been in any medical journals etc, as I could use this information as ‘evidence’. Thanks you for your time.
    Yours sincerely,
    Sioned Dolan (nee Jones)

    • ltinnin says:

      Dear Mrs. Dolan,

      I used Google and Yahoo to search “complications of infant surgery” and “infant surgery without anesthesia” but found no help in any recent journal articles and no suggestion of any agency help for victims. The original definitive study remains the rock-solid report: Anand, K. J. S., & Hickey, P. R. (1987). Pain and its effects in the human neonate and fetus. New England Journal of Medicine, 317, 1321-1329.

      There are no outcome studies of treatment for PTSD after surgery for pyloric stenosis. We are collecting data but I think our report is still a year away.

      I wish you success in helping your brother get the treatment.

      Louis Tinnin

      • Jared Cook says:

        Hi Dr Tinnin

        My name is Jared Cook, and I live in Vancouver, BC

        Back in 1974 I had surgery to correct my pyloric stenosis.

        My life has been a living hell.. and I think I may be finally understanding why.

        If you would ever like to speak to me about my situation, please feel free to email me.

        FYI..I have also been in touch with the ITT clinic this week.

        Cheers
        Jared

      • ltinnin says:

        Hi Jared,
        If your living hell is due to the trauma of infant surgery, your treatment may give you a new life. Please carry through with it.

        Dr. Tinnin

    • dean says:

      Mrs Dolan…I just wanted to say that I have felt exactly the same way as your brother about my depression symptoms. I had the operation in 1957. I have tried antidepressants and none of them worked for me and many made me much worse. I too felt that these feelings were connected to something much worse or bigger as in your words. Diet and exercise is the best for me also but anxiety medication can be of some help also, although if someone can do it without medications I’m all for that. I too do not feel connected to he rest of the world. So you can tell your brother he is not alone. And I wish you much luck in getting the governments to help…I know here in the good old USA they would say …”we saved your life …so just shut up and be happy about that!”…or something to that effect.
      These blogs are a great help…and I’m just getting started…I just learned that I had the operation without anesthesia last month. But I just thought that you or your brother would like to know that there was some one else that feel the same. Dean

      • sioned dolan says:

        Thank you SO much Dean for taking the time out to message me. I will see Gareth next week and will purvey your message; I think it will give him a sense of comradarie that he’s not alone on this path. At the moment he is looking into getting the right treatment, as he feels this is the next step; but can’t afford it at the moment. My brother is blessed and is lucky
        enough to have a family who areBbbbbbbbbbb
        completeportive of him

      • sioned dolan says:

        Sorry; the end should have stated supportive of him, as I hope yours are of you. I wish you love and light on your journey of healing. Sioned x

      • gareth jones says:

        Hi Dean I am the brother of Sioned and I thank you for your information and understanding. YOU ARE RIGHT, I do feel better knowing that I am not the only lost alien on this planet, ha ha. I hope one day we can all look back on our life experience and say – We know we had to go through that to be who we really are, and it was worth it. That is my hope for anyone who sufferes any kind of mental health issues to make trauma on any level a thing of understanding and the past human progress to evolve as people with clear, focused and balanced minds/lives. Peace and good vibrations to you and your family.

        Gareth Jones

      • Hi Gareth. Been reading your posts, and having suffered the same op back in 1952, I have been led to turn the mental/emotional pain into a Global Vision, so to share http://www.achildunheard.com

        21st Oct Thought for the Day – Always With You.

        Silent with wonder, never to be lost to His Spirit……………….

        http://www.achildunheard.com/phpBB3/viewtopic.php?f=8&t=2701&sid=428d9fb6810cc1e7e8c97a05edee0da8

        Keep safe, and God Bless. David

    • dean says:

      Leaving a reply under Sioneds’ comment because I couldn’t see a reply under the others…
      Just wanted to say thanks to Gareth and David for the communications. I also hope this someday does show us it’s greater meaning. But darned if I can see it yet. I just wanted to mention a book that I find helpful when that question of meaning seems to be more allusive than normal. It’s “Mans Search For Meaning” by Victor Frankl. I don’t know if you have ever read it before but I find it particularly helpful when i’m trying to find the meaning of the suffering that was brought about with the actions by a cryptic and incorrect health care system that decides to not tell the parents that their child was operated on with little or no anesthesia. It would have been nice if they would have at least told our parents that your son or daughter is a little fighter to have come through such a horrendous operation and still have a smile on their face. It would have been nice to know before my parents died because they never could figure me out. And for that matter neither could I. Thanks health care system for saving our lives but up yours for hiding how you did it! And not only that…everybody that I have told this to outside of this group (except 1 65 year old doctor who affirmed that it was true) acts like I’m crazy. In America? In the 20th century…you’re nuts…is the looks and stares I get. But thanks for the words of encouragement and friendship …and David I’ll be sending your organization a check soon. Keep up the good work.
      Dean

      • Hi Dean. Yes read the book by Victor many years ago, along my spiritual journey. Your also so right, I dont believe my parents were told what happened in real terms, and with 2 damaged parents and a hurting , emotionally damaged child on their hands, its no wonder I became A CHILD UNHEARD. Just so thankful and grateful that I took the challenge to look within, and connect with the damaged inner child, and the awesome way the doors are now opening up across the world for the message of the A Child Unheard Foundation message. Its being embraced by the entertainments world in LA/Hollywood right now, so watch out in 2014 for the message to truly emerge. One long journey, one which is best handled with much solitude, as I have found. So keep searching and connecting with the Child Unheard within, is I believe the key. My thought of the day to share. http://www.achildunheard.com

        13th Nov Thought for the Day – To Stop That Longing.

        I’ve written a million lines………………..

        http://www.achildunheard.com/phpBB3/viewtopic.php?f=8&t=2724&sid=5b44576b5975875bf37c6c8d91c85fc6

  14. Excellent information. I had Pyloric Stenosis operation without anaesthetic back in 1952, and one’s life is a nightmare. I have battled with the effects, and from it, has become a Global vision which is emerging based on my book A Child Unheard. http://www.achildunheard.com. Please share with others. God Bless. David CREATIVE SUFFERING

  15. Amy says:

    Dr. Tinnin,
    I’m interested in the work you do and curious to get more information about it. I had surgery as an infant for pyloric stenosis in 1959, but had no idea until very recently that anesthesia wasn’t used during procedures. In fact, I’m still kind of reeling from that information and am incredulous it was never mentioned to me before, especially in terms of the obvious trauma it might cause. I’ve had medical complications from my surgery (staph infection at the time and intestinal blockage caused by adhesions as an adult) and have struggled most of my life with depression and anxiety-related disorders, including symptoms of PTSD.

    So, help!

    Exactly what kind of treatment does your clinic provide? I went to the website but was unable to find details on the specific therapies or protocols used, only the bios of you and your staff and that the treatment would require a week’s stay in Morgantown. If I missed the clinical information on your website, my apologies, but I’d like to be able to discuss the possibility of treatment at your clinic with my therapist and family in articulate detail. And of course make a commitment to do so with confidence, which is often a tall order for those of us who seem to have just about “tried everything” to overcome our debilitating and confusing symptoms. Thanks so much. I appreciate it.

    • ltinnin says:

      Amy,

      Intensive Trauma Therapy Inc. in Morgantown treats infant surgery trauma by helping a person create a story of the operation with the help of guided imagery (relaxed viewing of the operation as a hidden observer watching from a safe distance). The therapist guides the imagery so that the critical physical sensations of the instinctual trauma response are detected though not relived. The narrative includes beginning, middle, and end of the surgery and recovery. The person then creates a graphic narrative with drawn pictures showing each phase of the instinctual trauma response (startle, fight/flight impulse, freeze state, altered state of consciousness, automatic obedience, and self-repair). These pictures are pinned to a large bulletin board in sequence and a therapist tells the story to the person and other therapeutic team members. The goal of this re-presentation is for the person to avow the traumatic experience as personal history and experience the memory as closed, finished, and past-tense.

      This brings relief to flashback and re-experiencing symptoms. However, further work is needed for full recovery, which is to repair the inevitable dissociation. The person is helped to contact the inner baby self left behind by the trauma and still hurting from the depths. This is done by externalized dialogue with the baby. It permits unburdening of the inner child and welcoming the child part into the person’s present life.

      We understand such preverbal traumas to be foundational traumas that inter into other later traumas and in treatment make it possible to more readily retire other traumatic memories. The time required for the work is 5-10 days.

      The clinic intake worker can be reached by email or telephone on the website, http://www.traumatherapy.us.

  16. Pingback: Infant surgery without anesthesia (1): choices have had consequences | Stories from the Survivors of early Surgery

  17. ltinnin says:

    Heal Your Infant Trauma (DRAFT)
    Louis Tinnin, MD & Linda Gantt, PhD, ATR-C

    Introduction
    This is a program to help survivors of traumatic experiences during infancy (first three years of life). It provides systematic instructions for retiring these traumas yourself when you can find no psychiatrists or psychologists or therapists trained to do this work.
    About Preverbal Trauma
    It had been widely believed that babies will not remember pain and therefore will not develop post-traumatic disturbances. The medical establishment shared this delusion until 1987 when it was shown to be false by a heroic scholar, Dr. Anand, who published his definitive studies in The New England Journal of Medicine. Before that, newborns and infants up to 18 months of age were operated on without anesthesia. As a consequence, anyone now 26 years or older who had major surgery as a baby is at risk for chronic posttraumatic illness because the surgery was probably done without anesthesia, which was the custom in most hospitals prior to 1987. Abdominal surgery for pyloric stenosis and chest surgery for congenital heart problems were the most common forms of infant surgery. Together these surgeries were required for about eight cases per 1000 births. A rough estimate of the number of survivors during the single year of 1987 (3,829,000 live births) is 30,600. We do not know what proportion of these survivors is now suffering with posttraumatic symptoms but considering the severity of the pain and the helplessness of the infant we would expect that the majority of these infants were traumatized.
    Infant surgery without anesthesia is a glaring example of preverbal trauma but there are many other traumas during infancy. Babies in pediatric intensive care units are subject to many painful experiences such as injections, chest tubes, and breathing tubes. Aside from the hospital, trauma threatens infants in many ways. Accidental injuries, illnesses, maltreatment and the witnessing of violence are sources of trauma. People that have survived these early traumatic experiences usually cannot recall them verbally and they cannot forget them nonverbally.
    Life-Long Symptoms
    The symptom picture of the survivors is broader than the usual picture for posttraumatic stress disorder. Adult survivors report life-long symptoms of anxiety (constant nervousness and spells of terror or panic), hostility (temper outbursts and urges to smash or break things), depression, self-consciousness, distrust of others, and a high vulnerability to stress. The life-long aspect of these symptoms leads to the faulty clinical perception that they are personality disorders instead of recognizing them as persisting reactions first elicited by preverbal trauma. That recognition opens the way to curative treatment of the adult survivor.
    Infants Feel Pain, Remember Pain
    We know today that infants feel pain and they remember the pain. That memory is not verbally coded and therefore is not conscious. It has not been mitigated by time or by life experience. It festers in the nonverbal mind and threatens to overwhelm the person. The unfortunate individual is blind to the origin of the symptoms and usually attributes them to present causes such as some physical or mental illness. Those survivors of infant surgery without anesthesia that do seek treatment might do so because of baffling symptoms of pain and fear or dissociative symptoms.
    Cure Is Possible
    The posttraumatic syndrome of infant trauma is not generally recognized. There are individual therapists using medical hypnosis that understand preverbal trauma and use hypnotic age regression to bring the original experience to consciousness. Our self-help program was developed on the model of a specialized trauma therapy program, Intensive Trauma Therapy, Inc., (ITT) in Morgantown, West Virginia, that has treated the syndrome of infant trauma for years. ITT developed a unique approach, which is not the traditional talk therapy but uses other methods to access parts of the brain that store the imprint of the trauma
    Are My Symptoms Due To Trauma During Infancy?
    How can one determine if present symptoms are due to trauma during infancy? Of course, there is no blood test for this. The usual clinical diagnosis of PTSD is not enough because the present symptoms might be described by other diagnoses such as panic disorder or major depression. However, in the presence of chronic symptoms and a history of trauma during infancy or during birth, a trial of treatment may be wise.
    Measure Change over time: the TRS
    The Trauma Recovery Scale measures recovery from trauma and can be used repeatedly such as weekly or longer to provide a measure of change over time. Do your first measure before beginning this program.

    TRS: T R A U M A R E C O V E R Y S C A LE (Created by Eric Gentry) (revised June, 2000)

    Place a mark on the line that best represents your experiences during the past week.

    1. I make it through the day without distressing recollections of past events.
    ._____._____._____._____._____._____._____._____._____._____.
    0% 100% of the time
    2. I sleep free from nightmares.
    ._____._____._____._____._____._____._____._____._____._____.
    0% 100% of the time

    3. I am able to stay in control when I think of difficult memories.
    ._____._____._____._____._____._____._____._____._____._____.
    0% 100% of the time

    4. I do the things that I used to avoid (e.g., daily activities, social activities,
    thoughts of events and people connected with past events).
    ._____._____._____._____._____._____._____._____._____._____.
    0% 100% of the time

    5. I feel safe.
    ._____._____._____._____._____._____._____._____._____._____.
    0% 100% of the time

    6. I have supportive relationships in my life.
    ._____._____._____._____._____._____._____._____._____._____.
    0% 100% of the time

    7. I find that I can now safely feel a full range of emotions.
    ._____._____._____._____._____._____._____._____._____._____.
    0% 100% of the time

    8. I can allow things to happen in my surroundings without needing to control them.
    ._____._____._____._____._____._____._____._____._____._____.
    0% 100% of the time

    9. I am able to concentrate on thoughts of my choice.
    ._____._____._____._____._____._____._____._____._____._____.
    0% 100% of the time

    10. I have a sense of hope about the future.
    ._____._____._____._____._____._____._____._____._____._____.
    0% 100% of the time

    SCORE: (Divide total by 10)

    Graphic Narrative Trauma Processing
    During the trauma, your brain automatically activated your nonverbal animal survival behavior, which we understand as the Instinctual Trauma Response. Your behavior was entirely instinctual and controlled by a crescendo of evolutionary instincts, including Startle, Fight/Flight, Freeze, Depersonalization, Automatic Obedience (animal submission), and finally, Self-Repair. These behaviors were involuntary. The memory of the experiences is nonverbal, remembered by the body as physical sensations. A major aspect of preverbal trauma was the utter helplessness of the separation from mother. This is probably the major generic trauma for newborn mammals, including humans.
    The Trauma Narrative
    There will be little or no verbal memory of a trauma that happened during infancy. The nonverbal memory will lack narrative closure, which is necessary for a memory to become past tense in consciousness. Such unfinished traumatic memories can trap the victim in unending torment. This can also follow if the trauma occurs after the preverbal period and narrative closure fails, which is commonly the case. In both cases, the solution is to bring narrative closure to the memory.
    Narrative closure to a traumatic experience must contain the nonverbal experiences linked to the verbal. The verbal narrative contains elements such as who, what, when, and where. In the case of preverbal trauma the verbal narrative is constructed from known facts or “what must have been.” The nonverbal contents are the phases of the instinctual trauma response. Both are contained in the graphic narrative constructed according to the order of the instinctual phases.
    The Graphic Narrative
    Each picture depicts the baby as viewed from the perspective of an observer. The drawings can be done freehand or chosen from an online menu (to be developed later). The drawings present the entire traumatic experience from beginning to end, bracketed by a Before Picture and an After Picture. The pictures can contain words describing the body sensations.
    • Before: depicts the person before the trauma.
    • Startle: the person hyper alert, apprehensive.
    • Flight/Fight: with a supreme effort to escape accompanied by an adrenaline rush, pounding heart, and rapid breathing.
    • Freeze: response to being trapped, with stuporous state and waning of organ function.
    • Altered States of Consciousness: depersonalization, alteration of awareness, and detachment from body.
    • Automatic Obedience: animal submission or like a robot.
    • Self-Repair: Equivalent to wound licking in animals accompanying recovery of body sensation.
    Grounding
    While you are drawing the graphic narrative, you might find yourself losing contact with the here-and-now. You may be ruminating, staring into space, or zoning out. You can correct this by grounding techniques that bring you back to the present time and space, securely re-installed within your physical body with your usual sense of self. The following grounding techniques should be practiced in advance so that you can apply them at will.
    Grounding techniques
    Grounding techniques can use any of the senses or mental operations (such as doing long division or naming items that start with a particular letter).
    Visual
    Look above eye level and name three things, look at eye level and name three things, look below eye level and name three things. Repeat this as needed.
    Kinesthetic
    Put your feet on the floor and put your hands on your knees, press down on your knees, feel how the floor supports your feet, put the small of your back against the back of the chair, feel how the chair supports you. Change positions: if sitting, stand up; if standing, sit down. Walk around the room or outside.
    Tactile
    Rub a grounding stone, a piece of textured material, or a stuffed animal; put a piece of ice on the inside of the wrist or elbow.
    Olfactory
    Use a pleasant smell such as lavender, cinnamon, or chamomile tea that you prepared in advance. Put a cotton ball soaked in favorite cologne in a small plastic bag and keep it in a pocket of your shirt or blouse.
    Bringing yourself back to the here-and-now may take as little as two minutes or as much as ten or fifteen minutes. When you are grounded, resume the drawing,
    The Content of the Graphic Narrative
    The graphic narrative will depict an experience that is much the same for any infant surgery. The trauma could begin when the baby is startled by separation from mother in the hospital room. A nurse will carry the baby either in her arms or on a gurney to the operating room. The room is brightly lit. It is cold. There is a surgeon, an anesthetist, and a surgical nurse. The startled baby is placed on the operating table and tightly bound so there will be minimal movement while the breathing tube is inserted into the windpipe. The baby’s startle converts to the instinctual fight/flight state and the baby fights to escape, but the escape is thwarted by the restraints. The baby’s screams are silenced when the tube is inserted and connected to the respirator. The baby’s body strains against the restraints. The anesthetist librates an arm or leg and inserts a needle into the vein for the connection to IV fluids to administer the paralytic drug. In minutes, the baby is totally paralyzed and the restraints are removed. The baby’s chest moves as air is forced in and out by the respirator. The baby’s flaccid body cannot resist. The skin pales. The paralyzed muscles pose no resistance to the scalpel, now making a swift incision that opens the abdomen (for pyloric stenosis) or chest (for cardiac malformation). The baby is in a freeze. There is a slowing of the internal organs but the bleeding is copious. When the surgical correction is completed, the surgeon sews up the incision. The paralysis is reversed and the breathing tube is removed. As the paralysis wanes the baby experiences an altered state of consciousness, and feels separated from the body. When the baby gradually regains felt location in the body the body remains passive while being wheeled into the recovery room where the state of automatic obedience permits unimpeded nursing care. After several hours, the baby is reunited with mother in the hospital room and begins the period of self-repair. The most accurate after picture will show the baby active and free of pain.
    Drawing the Graphic Narrative
    You will draw yourself at the age you were when the traumatic surgery happened. You should draw while maintaining an emotional detachment from the scenes. Try to draw with your left hand if you can and maintain the stance of an unemotional hidden observer. If you find your hand drawing unwilled, on it’s own, encourage that and welcome all expressions of your nonverbal mind
    The graphic narrative will consist of nine pictures at least. Use a separate sheet of paper for each picture. Label the nine sheets to include: Before, Startle, Fight/Flight, Freeze, Altered State, Automatic Obedience, Self-Repair, and After. Your goal is to construct the narrative of your preverbal instinctual experience so that it can be re-told, recorded, and re-played. You may need transition pictures inserted between those showing the instinctual states to permit a verbal story that carries narrative truth. This will be the carrier of the nonverbal truth, which now can become assimilated into the verbal memory bank. Now, draw the pictures as follows:
    Before
    This picture will show the intact baby with the mother, probably in the hospital room with a crib-bed.
    Startle
    The baby might startle when taken away from mother, and again startle when within the operating room or being in restraint on the operating table. The startle might interrupt the baby’s crying and put the child into a hyper vigilant state. When the baby’s head is tilted back and the endotrachael tube inserted, causing smothering, the child struggles.
    Fight/Fight
    With an internal rush of adrenalin and a burst of muscle effort, the baby fights to escape.
    Draw this thwarted struggle before the trapped child surrenders and lapses into a freeze state.
    Freeze
    With an internal rush of endorphins, the baby descends into torpor. The paralytic drug compounds the internal shutdown of the freeze and this near-death experience is imprinted in the brain’s nonverbal memory. The baby is numbed but still helplessly feels the pain of the incision and the manipulation of the internal organs by the surgeon. Draw the near-death state of the baby under the scalpel of the surgeon
    Altered State
    A complication of the freeze is a loss of propioception (a sense of self contained in body). That involves a loss of self-location and the child may perceive self as outside the body, watching the scene from above.
    Automatic Obedience (animal submission)
    This instinctual state may blend with the paralysis and produce a distinct body memory. The drawn picture depicts the passive child.
    Self-Repair
    This picture might show the baby in the recovery room experiencing a return of body sensation.
    After
    Finally, the traumatic experience is over and the baby appears normal.
    Re-Presentation of the Graphic Narrative (Recorded In Video Or Audio)
    Display your pictures sequentially, pinned to a bulletin board or taped to a wall, to provide viewing them from beyond arm’s length.
    This is the high point of the trauma processing. It is your opportunity to convert this unfinished experience to personal history that is now past tense. You can tell the story aloud (record with video) with empathic understanding of the body’s experience, especially the near-death experience of the Freeze shutdown, and as many of the other phases as possible, ending with the Self-Repair and After Picture showing survival and recovery of the body. Complete the re-presentation with a decisive ending to emphasize that “that was then, this is now.”
    Review of the Graphic Narrative Re-Presentation
    Replay the re-presentation for you to experience as audience. Later, find occasion to review it again and discuss it with the infant part.
    Externalized Dialogue with the Inner Infant
    Many of your present symptoms arise from your inner infant self locked in the unfinished traumatic experience and easily triggered by current events. You can communicate with that child in an externalized dialogue. Try a written dialogue. First, you write with your right hand, addressing the baby, and inviting the baby to communicate with you using the left hand. You can be reassuring and loving in your invitation. You realize how your inner baby has never felt safe and now it will be possible for you to promise protection and safety. You can inform the baby that the trauma is over and it is possible to participate in your present life. Sometimes the baby will be untrusting and afraid of you but this will change as you have more dialogues.
    Externalized Dialogue with Other Parts
    Commonly, there will be other parts that developed during your trauma response and persisted in timeless striving to survive. Dialogue with them can achieve acknowledgement, unburdening, and welcome into your present life.
    You may find some troubled parts that developed out of your utter helplessness. Their burden may be to carry the shame, or to drive you to become invulnerable. Some parts might continue the fear, or fight, or freeze, or altered state (such as out-of-body experiences), or automatic obedience (such as inability to say no to another’s demands) or compulsive hand washing or obsessive survival rituals. You did survive with the help of, or despite these parts, and since the trauma is over their jobs must change. You can help these difficult parts to change. They can become good company and helpers and you can love them, but good or bad, they are probably permanent. Not always though, because parts of yourself active in your present life can eventually lose themselves peacefully within you.
    Repeat Trauma Processing for Other Traumas as Needed
    Graphic narrative trauma processing gets easier as you get used to it. The difficulty varies but the process is the same with all traumas at all ages. Bringing closure to traumatic memory retires the trauma and permits repair of dissociation by externalized dialogue. The benefit is permanent and well worth the time and effort spent.

    • Wendy says:

      What an incredibly generous and thought-full comment. Thank you, Dr. Tinnin, for taking the time to outline the process. It summarizes some of the material in your book in a succinct and inviting way. I sent your comment to a friend who is needing help with one of her children. It gave her some hope, I believe.

  18. ltinnin says:

    I edited my last post to include The Process of Drawing the Graphic Narrative. Next, I will try to edit so that headings stank out.

    Lou Tinnin

  19. Wendy says:

    I am looking forward to see this version. Thank you!!

  20. May I add my heartfelt thanks to you, Dr Tinnin, for this site?
    The information on your blog, the details you have added about your therapy program, and your allowing those who wish to interact here… all this is tremendously valuable..Many of those who have commented have been in touch with Wendy Williams’ and me via our blogs. It is so heartening (as many of the comments above show) to know we are a community of sorts and not “strange” and alone in what we have endured because of the way our infant surgery was done.
    I trust many will be able to benefit from interaction and your “Heal your infant trauma” program.

  21. ltinnin says:

    I am hoping for feedback from those of you that tried the self-help program. Were you able to maintain a safe emotional distance while observing the scenes? Did you use grounding measures to avoid being pulled into reliving the experience you viewed? Were you successful in retiring the trauma? At what point would you expect others to have trouble doing the program?

    Please help Linda and I to perfect this self-treatment program.

    Thank you.

    Lou Tinnin

  22. Wendy says:

    I have not yet tried the entire program yet. I will let you know the results if and when I do. In the past, I did quite a bit of drawing about my pyloric stenosis surgery. I also engaged in psychological therapy and somatic therapy, Middendorf Breathwork, but I still have post-traumatic stress symptoms from the surgery. I know I have not entirely completed or retired the trauma to the past. After reading “Heal Your Infant Trauma” post on your blog, I realized that many of my pictures depict my helplessness but none my repair. None of my pictures show my mother’s participation either. So recently, I drew myself as an adult looking at myself as a sewed-up baby on the operating table. Then I drew a picture of my mother sitting in the hallway of the hospital, looking in on my in my oxygen tent through an observation window, a scene she had described to me many times over the course of my life. Then, I drew myself home from the hospital in a bassinet by my mother’s bedside. In a cartoon bubble, I wrote, “Coo, coo” above my head because my mother told me that after I came home from the hospital, probably after a month or so, I don’t know, I began to make peaceful sounds. These 3 new pictures did help in the short term. I felt more grounded for a time. I may decide to try the program you prescribe, but it does feel scary. I know you give many grounding techniques, which feel right. It’s just that doing it alone feels daunting. The experience of the operation was so very isolating as a baby that the idea of healing my own infant with your wonderful technique seems too lonely. Maybe I can ask a friend to help. I did indeed write a memoir manuscript about my operation trauma and, in the doing of this, researched pyloric stenosis surgery in the 1950s at a medical library. I spent a lot of time alone doing this. For me, it seems like support could help but maybe I just need to be more in touch with my “observer” self. If I try your program, you will be the first to hear the results. Thank you so much for trying to help us all.

  23. dean says:

    I too would like to thank you Dr. Tinnin for this short synopsis of what is very likely a long and drawn out effort to recovery for me. I will be trying your Graphic Narrative Processing lesson in the coming weeks or months and will let you know my results. But I have one immediate question for you that I sure could use some help with. I have to have surgery in the next month for something that has been giving me great intermittent pain and discomfort for a long time. When I told the surgeon that I may have developed a phobia because I had been operated on as a child without anesthesia (and a very unsatisfactory back operation 15 years ago) …he vehemently disagreed with me that this was possible! His reasoning was, he said, that he had been a child surgeon in his earlier years and he could assure me that children always have been given anesthesia, and that what I was saying was just not true! Now I have since looked up his residency records and he did not become a surgical doctor until after 1983. So in his history as a surgeon he probably never did do a surgery without anesthesia..and it is very likely the University where he trained was more enlightened and had been giving anesthesia to infants at a much earlier date than the facility where I was operated on back in 1957 in Cincinnati Ohio. So this is the question that I have for you…Should I be concerned with his reaction and or his lack of knowledge that surgeries were performed on children without anesthesia “before” he became a surgeon? Or is this a typical response of a surgeon practicing after they made it law to give anesthesia to children? I am a bit concerned that he doesn’t know the history of his own field but I have been told that he is a gifted surgeon and I am wondering if I should be at all concerned. Would this be something that people in his circles would not want to talk about when he took “history of medicine” classes while in school (if there are such classes) ? or was he just trying to set my mind at ease for my upcoming operation? Is this something that the medical community would rather coverup and not talk about..even to aspiring new surgeons? Should I show him your web site or book or should I view this as a non issue if I can muster up the courage to go thru with the operation? I have pushed the date back one month already and am a bit concerned that I may not be able to go through with it. It has been bothering me for a long time sapping me of my drive and energy but is not life threatening. Your insight would be appreciated because besides Wendy (above) and my wife I have a limited support group. My sister practically hung up on me after I told her that I may have been operated on without anesthesia as a child…and hasn’t called me back since I told her a week ago. My brothers will say get over it. And my parents are no more. I always knew the childhood operation was a larger hurdle for me because of the operation as a child but it has only been about 2 months since I learned that there was a good probability that it was preformed without anesthesia and my nightmares and anxiety have increased as of late. Although I believe I will be able to overcome these with time and books like yours. Your thoughts and input would be appreciated. There are other good doctors in other cities but he is the top surgeon in my area that preforms this type of surgery. I have had operations in other cities and know the problems with being admitted locally if there are complications (which has happened to me before). I will be picking up your book soon but my dyslexia prevents me from devouring much print material in a very fast manner. Another sign of neglect from my parents and public school because that was not diagnosed until I was almost 40. It is quite perplexing that it seems that there was never any follow up research on children with infantile surgeries…and families tend to treat them as we ” were ” problems…but require no further attention. I’m sorry for rambling on this public board but this is a big and pressing problem that I HAVE to deal with soon and your input would be greatly appreciated.
    Dean

    • ltinnin says:

      Dear Dean, The conclusive proof that babies do feel pain and do tolerate analgesic medication well enough to permit pain control during surgical anesthesia was established ion 1987 and pain control during infant surgery became standard practice (but not by law). The professional ignorance of this fact is astounding. A current ignorance persists about the traumatic effect of pain during infancy. It is said that babies will not remember pain later. Although it is true that we do not have verbal memory of infancy, we do have nonverbal memory, which is body memory. We cannot remember it verbally (consciously) and our bodies cannot forget it. Your family and friends may not understand how you could be suffering today from pain during infancy.

      I don’t know the nature of your current condition that requires surgery. If you cannot postpone surgery until you recover from the infant trauma, I recommend that you find a surgeon who is knowledgeable about the history of surgical pain management for infants. You should talk to the surgeon and the anesthesiologist and request that you be talked through the operation, that is, to be reassured by speech despite your being asleep at every step of the surgery.

      Please keep us posted.

      Louis Tinnin, MD

      • dean says:

        Thanks for your reply and time Dr. Tinnin. It sounds like a tough sell to get him to talk through my operation but he may go for it. The only thing I would be concerned about would be that the talking or explaining what he was doing while he was doing it might throw him off of his normal routine and he might not be as fluid in his movements thusly being less perfect in his craft. But I may have a talk with him about it.
        I’m not afraid of the operation per say , like I worked up with Wendy, last week, I think that we have shown that we are tougher than your typical children since we have been through so much already. If we were able to survive being operated on in such an emaciated state, all dehydrated and so near death… I believe that I can deal with the operation…it’s living on these annoying narcotics and this daily pain which is really getting me down. So no I can’t put off the operation very much longer.
        One thing That I was wondering if you could answer and what struck me was that he said that he was a pediatric surgeon and he never herd of children not getting anesthetics! So I was wondering is this issue a state by state issue or is it hospital by hospital? He seems very sincere that he would have never operated on a child without anesthesia and was very genuinely disturbed at the thought that babies wouldn’t get anesthesia. Possibly the hospital where he worked was ahead of the curve when it came to giving anesthesia to infants? Or is this some major medical association cover up because they are afraid of getting slapped buy a 100,000 person class action? It is so hard for me to believe that this was standard practice in all hospitals all over our country. I can believe that when Wendy and I got our operations (in the 1950s’) there may have been as many as 70 or 80% of hospitals doing no anesthesia operations but hasn’t that number declined dramatically decade by decade? Are surgeons that removed from their patients suffering? As I said before this is very hard to believe much less process in my mind. I always knew that the operation at such a young age was a traumatic incidence …in my past…but to believe that it was done without anesthesia and the use of curare to immobilize brings that pain and psychological trauma to a “much much” higher level. I’m not sure that “anyone” would “not” be irrevocably psychologically damaged by such an awful trauma! I’m having trouble understanding how any professional would be so callous as to cut into a child without proper pain sedation. What i’m getting at I guess is that my chosen surgeon was so shocked that I would even think that something like not anesthetizing children goes on …that he definitely believes in proper and thorough sedation when he is operating now!
        I would just like to ask one last question here before I ramble on too long and that is …what came first …the chicken or the egg? In other words did they truly believe that children did not and do not feel pain (which sounds more like something that dumb monkeys would do and not university doctoral graduates), or were they afraid of giving the children anesthetics because they thought that the anesthetics would kill the babies and they were afraid of getting a law suit for that? Which could it be I’m wondering. Because I am finding this very very hard to believe…even though my nightmares tell me that it is true.
        Thanks for your time and letting me ramble. I hope I haven’t sounded like a raving lunatic…..but I only have herd about this only 2 months or less now and it sounds like the civl war was only 30 years ago and they are still giving people sticks to bite on for amputations and operations.
        Dean

      • ltinnin says:

        Dean, I meant to suggest that “talking you through” would be donee by the anesthetist who sits at the patient’s head to manage the anesthesia and who might talk through earphones to the patient.

        You haven’t rambled. You have given great thought to the issue and I believe you have raised important points for all of us to think about.

        Louis Tinnin

  24. dean says:

    I told my surgen that i may have been traumatized as i child because i had a pyloric stenosis operation with out anesthisia …and he almost became angry and assured me that i could find anything on the internet..and that infant surgery without anesthesia never happened.
    Yesterday i told the older GP in the practice where I go that i have an operation scheduled for the 22nd of next month and that I may need some extra care when i do. I also to him that i recently found out that i may have had a major surgery “without anesthesia” and he said ” i know ..is’t that just awful”. As if he knew that is’t was common place.
    What am i to take away from this? .is the surgeon an uneducated ninconpoop…or have some hospitals told the doctors not to talk aout it? , was his hospital ignotant that his hospital or history professor old not to mention this or shoud i swith surgeons?
    Signed confused about this whole medical coverup crap! and considering anoyh suegeon im another state. Ps …the ipad editor sinks!
    Dean

  25. Dale Daniels says:

    This is in response to discussions about symptoms manifested in adults who underwent infant surgery without an anesthesia. The symptoms listed below are those I have noticed in myself through the years and wonder to what extent they may be common to others. I look forward to hearing from those who have noticed them in themselves. I was operated on fom pyloric stenosis in 1948 within two months of my birth.

    Wondering “why”. Why did they hurt me? Why did they keep me away from my mother and father? Did I do something wrong which caused me to be punished?

    The last question has led me to blame myself and conclude that there must be something wrong with me. Otherwise, they would not have tortured me.

    Extreme sensitivity to criticism

    Fear of abandonment

    Heightened fear of death and all things associated with it like hospitals, doctors, nursing homes

    Desire to hide or disappear in stressful situations and fantasies of invisibility – in hopes I can escape notice by those who wish to do me harm

    Withdrawal tendencies, especially in crowded rooms

    Introversion

    Difficulty with small talk, initiating conversations

    Submission to authority figures

    • dean says:

      Hello Dale
      I have been revisiting this issue as of late because I have posponed a surgey that I had scheuled and I’m having trouble beliving that it was because I had not explored all my other options or is it this same fear and distrust of doctors , hospitals and anything of the like when I came to reread your post. And I just wanted to say that I too have many of the feelings and symptoms that you and Fred spoke of.
      I wonder more why my mother and father didn’t seem to realize that this was a major operation and why they didn’t seem to care if I suffered any trauma from this brush with death. I also wondered…doesn’t anyone care about me? Noone even noticed that I needed glasses until after I failed the 8th grade…and only then because a kind old neighbor lady who was asked to tudor me in Latin noticed that I couldnt make out what the pictures were on her walls. She and her husband died soon afterwards from alcohal and cigaret abuse. Adding to my mistrust of “normal” people. Because the only one that cared to help my seeing problem was a poor old drunk lady. Also adding to my fear of death and the precarious nature of life that I felt subconsciously. I have only recently become aware of why I felt the way I did with the discovery of this and other blogs such as Freds and Wendys.
      I often ask the question…”Why me”? But my question is formed more arround why didn’t anybody close to me seem to care? In fact the opposite happened. Total neglect. They hid from me because they thought it was funny that I couldn’t see or find them. And my brothers and sisters completely locked me out of their lives… To the point that they still treat me like a child and wonder why I’m not all that interested in being their friends today. Lately they have stooped to telling me how much money they have as if that makes any difference…and they have alot! Cause that’s all they ever did. They sure didn’t spend time with me!
      I have come to accept abandonment because it was such a constant and chose to see it as Henry David Through says in Walden …now ” I like to be By myself”. A great read by the way…Walden. Almost like a Bible to me. But perhaps I’m just rationalizing.
      Fear of hospitals …deffinatey.
      Introversion…very much so. I find most people tedious and exhausting because of all the small talk and prejudices they seem to embrace.
      Desire to disappear….maybe…or maybe I wish I was that way…The Fight response is much stronger than the flight response in me…which has probably done me as much harm as good.
      Extreeme sensitivity to critisism…deffinately.
      Withdrawl tendancies essp in crowded rooms…. I avoid them entirely.
      Wondering if something was wrong with me…deffinately I’ve been through Darwin , christianity, budaism and back on this one.

      So you’re deffinately not alone partner.

      This being my birthday week I have been thinking and writing alot about this because it is foremost on my mind. Part of me is very proud that haveI beat the odds for people less fortunate than I … I turn 56 today. And another voice inside my head says… But how many more years do you think you can cheat death? So i guess that answers your other question…I am very fatlistic about how many years more I may live. Heck when I was 20 I was sure I wouldn’t reach 40. So yes I do think i am constntly cheating deah somehow.
      Nuff said
      Dean

      • Dale says:

        I try not to blame my parents too much for what I feel and think today. I have no way of knowing how they responded to my surgery. I imagine they accepted the conventional medical wisdom of the day and left me alone in the hospital at night. I can’t see my mother sleeping in a chair beside my bed – she just wasn’t the type to do something like that. Being an infant, I was unable to rationalize her actions, as I am able to do now, as an adult. All I knew then was that she absent; my infant brain concluded that she had abandoned me and I think I held that against her for the rest of her life. We had a strained relationship – probably from my fear of ever being vulnerable in her presence again. I think I decided unconsciously that I would never again give her or anyone else the opportunity to abandon me. Abandonment feels like death – for an infant, is death.

      • Wendy says:

        The book that Dean refers to is titled The Instinctual Trauma Response & Dual-Brain Dynamics by Drs. Louis Tinnin and Linda Gantt. You can order a copy on Amazon for about $20. It’s amazing!!! I have read it twice and highlighted a big chunk of the book. It explains preverbal trauma perfectly and describes the treatment that is offered at Intensive Trauma Therapy, Inc. in Morgantown, West Virginia. The book is very reader-friendly. I recommend it highly, obviously.

  26. Dale, your list here is quite different from Dr Tinnin’s 10 Questions in the post at the head of this page, but equally valid.
    It is remarkable, I’m sure not only to me, that I can tick almost all the items in both his and your lists. To me that would have to add even more strength to the evidence that infant surgery as widely done before about 1987 has in some or many cases had serious long-term effects. What’s more, several of those with a pyloric stenosis story with whom I have networked have also echoed much the same list as the one you have shared with us.
    What I still wonder about is whether it was the lack of general anesthesia that was the only cause of this trauma, or one among several. I’d love to be able to follow Dr Tinnin’s therapeutic program; failing that it seems certain I will never know whether or what kind of analgesia I was given. My research suggests that when and where I had my pyloric stenosis operation, local anesthesia was the standard.
    My research and the few stories I was told have added to the list of the likely causes of my trauma the effects of: the starvation of my brain in my early development, maternal deprivation during the then standard 2 weeks of hospitalisation, the not inconsiderable traumatisation of my parents resulting from my horrible condition and treatment, and my own struggle to manage growing up with a scar and the sundry emotions that I was not empowered to understand and thus “own”.with confidence and even pride.
    I’d be very interested to know whether you and others can tick these possible linked causes of our trauma.
    I strongly hope that my and others’ writing will result in (1) at least some solid research into this whole subject, with Dr Tinnin’s voice very much a lone one; (2) pediatric doctors giving more weight to the real option of medical treatment for PS; and (3) much greater awareness of the untruth of the common assurance that the parents of PS babies get, that “PS and its surgery have no long-term effects”.

    • ltinnin says:

      Fred, I believe that infant surgery is traumatic, with or without pain control. The consequences of this trauma form the very symptoms that appear in so-called personality disorders of adulthood. Constant fear and untrust, along with the stress reaction of the silent scream, all experienced in a life of silent desperation, are not recognized as posttraumatic. But they do respond to today’s processing of the infant trauma. Thank you for your contribution to the knowledge of infant trauma.

    • Dale says:

      Fred, Thanks for taking the time to respond. Fear has been a constant in my life for as long as I can remember – a vague feeling of impending doom, unattached from any conscious event. A feeling that something awful is going to happen to me, something over which I have no control and cannot prevent. If one can imagine an infant on an operating table aware on some level that masked persons with bright, sharp instruments are cutting him open and he cannot fight them off or flee, even though his survival is at stake. then one might be able to understand the origin of one’s fear and sense of hopelessness. Add to that terrifying situation the perception of abandonment by one’s mother and you have a fearful and depressed human being.

  27. Pingback: Healing after traumatic infant surgery | Stories from the Survivors of early Surgery

  28. Pingback: When infant surgery causes ongoing trouble (3) – signs of PTSD | Stories from the Survivors of early Surgery

  29. Wendy says:

    I too tick off all the item’s on Dale’s list and appreciate her listing. It makes me feel less alone and helps me to understand some more about myself and my ‘personality.’ I also tick off the items Fred mentioned–starvation of the brain and body, separation from parents, etc. And I relate deeply to what Dr. Tinnin said about the “so-called personality disorders of adulthood.” What we think of as mental illness is often a normal response to a traumatic injury or incident–a condition that requires attention, understanding, professional help, and healing. We are experiencing the stress of unresolved injury. Wow, this information has got to get out to the public. So much clarity would result. So many people who are suffering would begin to have some hope. Thank you Fred, Dr. Tinnin, Dale and everyone who is part of this dialogue.

  30. ltinnin says:

    This is in response to comments of Dean (11-14) and Dale (11-15), both inserted above between Dale (8-8) and Fred (9-15).

    It might be helpful for you to know certain opinions about infant surgical trauma that I have reached: 1. The mammalian trauma of separation from, or abandonment by, mother during the first weeks of life is a part of that experience of utter helplessness and pain during surgery. This interferes with the biological course of the surviving infant’s attachment to mother. 2. However, the core of trauma and its effects is the unfinished experience of animal survival instincts, which cannot come to closure in the nonverbal mind. The trauma seems unending and the instinctual strivings to escape and survive do not cease. 3. The development of the verbal mind around age three obscures the unending trauma of the trapped infant. The trauma experiences of an inner infant self continue outside of verbal consciousness. This may go on forever if the individual fails to find a way to communicate with and rescue the infant self.

    Dean and Dale, I believe this is your story. Each of you must find a way of bringing closure to your preverbal traumatic memory and of communicating with your traumatized infant self.

    Louis Tinnin

    • dean says:

      Thanks for the reply Dr. Tinnin
      This is alot to think about in 3 very compact (and complex but understandable) statements. One of the things I intend to do is spend a lot of time working on your self help method, drawing it all out as best I can and try to remain as much an independent observer as possible.. I was wondering; how do you know if these images are realistic or just what you would like to see or what you think you need to resolve because that is what others have done who have completed this phase successfully? And I like to draw and was kind of looking forward to these drawings until I read about drawing with the opposite hand; so is this very important? To try to draw with your opposite hand.
      I also agree with your statements that these feelings will never go away until the nonverbal trauma is addressed so I dont intend to post for awhile until I have spent a good and honest amount of time working on your instructions.
      I know I have posted alot in the last few days (too much I know) and I really try not to ramble but I feel that a particular statement in your book is haunting me which I want/have to resolve ASAP. And that is that people who do not resolve this nonverbal trauma do not live in the real world (i’m paraphraseing)… I don’t know about others but I know I have a propensity for this …and this “must” be corrected!
      Thanks …Dean

    • Dale Daniels says:

      Dean mentions a book you may have written . Not familiar with it. If such exists, please share title. Thanks. Dale

  31. ltinnin says:

    The book is titled “The Instinctual Trauma Response and Dual Brain Dynamics: Guide for Trauma
    Therapy” by Louis Tinnin & Linda Gantt, available in paperback on Amazon.com.

    • Dale says:

      Thanks for info on your book. I found another that I just finished reading: Healing Developmental Trauma by Heller and LaPierre, who recommend the NeuroAffective Relational Model for recovery from infant trauma. Found it very helpful in understand my difficulties connecting to myself and others and identified with many of the symptoms mentioned.

      Dale

  32. Gareth Jones says:

    Hi Dr Tinnin I have re-read yours and Linda Gantt’s book and contemplated what advice you gave me the last time we had a dialogue. Your advise was to find a trauma therapist who could help me find my true self to groung too, and after finding two in the UK I decided to wait and have another go myself. This is what I have come up with

    http://trauma-transformation.blogspot.co.uk/p/vlogblog.html

    I thought that if I was going to go to the trouble of doing this I might as well give other people a reference point to go off so please feel free to take a look and comment please if you would to highlight my mistakes and/or understanding of the process.

    Thank You

    Gareth Jones

  33. Gareth Jones says:

    Hi Dr Tinnin I have re-read yours and Linda Gantt’s book and contemplated what advice you gave me the last time we had a dialogue. Your advise was to find a trauma therapist who could help me find my true self to groung too, and after finding two in the UK I decided to wait and have another go myself. This is what I have come up with

    http://trauma-transformation.blogspot.co.uk/p/vlogblog.html

    I thought that if I was going to go to the trouble of doing this I might as well give other people a reference point to go off so please feel free to take a look and comment please if you would to highlight my mistakes and/or understanding of the process.

    Thank You

    Gareth Jones

  34. ltinnin says:

    Gareth, I watched your re-presentation and video dialogues. You did a wonderful job. I want to welcome you and your brave parts into the full world. I encourage maintenance dialogue with your parts.

    Louis Tinnin

    • Gareth Jones says:

      Thank you very much. Yes I will and am at the moment uploading more videos about confidence mythology and some of my new realizations. I have firmly realized that this is an ongoing process (at least until it becomes an unconscious habit) that I must take care of and build upon and grow. I still cant quite believe its happened and am still awaiting a trigger to spoil it, BUT there is no power or much energy behind that thought process anymore. As soon as a “bad thought” enters my consciousness the two way dialogue begins – ” is that really going to happen?”, “probably not”, then why waste any energy on thinking it”, “I agree”. And then its put into the biological recycle bin and deleted. WOW absoluty amazed and I cannot thank you Dr Tinnin and Linda Gantt for your superb book on the steps to recovery not to mention all of your time and effort for this blog and all of your team for enabling such a therapy. I still dont really know what to expect in the future but I do know that I have many more choices and the world seems like a much betterr place now. Thank you

      Gareth Jones

  35. Wendy says:

    I just found out about Dr. Tinnin’s death back in February and I’m blown away. He made such a HUGE difference in my life. He confirmed things that no one else in medicine had touched. He understood the trauma of infants so perfectly. I will write a blog post about him soon and post the link on this blog. Just want to say how sorry I am that he has passed and how fortunate I am that I got to read his book and know him a little through this blog. Thank you, Dr. Tinnin. Wendy

    • Dear Wendy. I have just read your message, I am deeply sadden to hear this news. Likewise Dr Tinnin’s book, came into my hands at 61 years old, last year, to have some understanding and reflection on the Trauma I went through back in 1952 , was a great comfort, and source of understanding. Also helped me greatly to understand why I had been led over the last 25 years to develope the Child Unheard message/vision. May he rest in peace. Thought I would just share my post today, in memory to all of us living with the memories.

      When the atlas of life
      Appears blank
      Where toil shall cease and
      Rest begins
      The lights must never go out
      And music must always play
      For our sovereign Lord
      Will be our guide
      A beautiful, wonderful star
      A soothing balm of
      Joy, security and salvation
      For our hurting hearts
      To the very end.

      Comment: Everyone has noticed how hard it is to turn our thoughts to God when everything is going well for us. We ‘ have all we want ‘ is a terrible saying when ‘ all ‘ does not include God. We find God an interruption. As St Augustine says somewhere, ‘ God wants to give us something, but cannot, because our hands are full – there’s nowhere for Him to put it. Or as someone said, ‘ We regard God as an airman regards his parachute; it’s there for emergencies but he hopes he’ll never have to use it’. Now God, who has made us, knows what we are and that our happiness lies in Him.

      So allow the A Child Unheard in you – to you show you the way……………….just as I have been led to do.

      (Modern day reflection upon Psalm 48)

      Please also view the section ACU – The True Meaning. You see will see a wonderful testimony to the ACU message from the world famous author Paulo Coelho, an extract from his book, By the River Piedra I sat down and Wept.
      A CHILD UNHEARD – PAULO COELHO – THE TRUE MEANING.

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