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TOF and Trauma by Vicki Martin

Published: Tue, 5th May 2020, 01:17:00 PM

In the Summer/Autumn 2019 edition of Chew, we published the first part of a report written by Vicki Martin sharing her experiences and research in to the psychological effects of OA/TOF on patients and their families.  Here we publish the full report (diagrams can be viewed at the foot of the page).  

Vicki subsequently took part in a PTSD/mental health support workshop with TOFS' Anna Clark at our 2019 Conference.  In the interest of confidentiality and a relaxed atmosphere we do not record workshops at our conferences, however you can view other presentations here.

 

In the 1990s, I gave a talk at a TOFS conference about my life as an older TOF. Two specific features from that day linger in my memory: One was the pressure of anxious parents’ eyes watching me at lunchtime (I felt horribly responsible for demonstrating that I could eat normally). The other was people asking whether my ordeals with OA/TOF had affected me psychologically. Then in my mid 20s, I confidently stated that it had not. Despite having received three years of university counselling, and some additional support before then, at boarding school, I did not attribute any of my social difficulties to OA/TOF – and on paper I was an A grade student, which seemed to prove I was OK.

Twenty five years later (most of those also spent in therapy, in retrospect much of it relatively ineffective), I would have to revise that perspective.  In recent years we have become more aware of possible psychological effects from OA/TOF – both for the affected individual and for family members.

My recent experiences with Somatic Experiencing (SE), both within personal sessions and therapist trainings, have reframed my entire understanding of myself, and of the ways in which early medical/surgical experiences can have an impact. SE is a somatic (body-based) therapy for post-traumatic stress which was developed by Dr Peter Levine. It involves talking, but is not a typical ‘talk therapy’ as it focusses on tracking one’s experience through sensations, images, behaviours, emotions and thoughts/cognition. It can also involve touch.

At the TOFS conference this year (2019) I will be leading a workshop about trauma related issues. This article will give you a basic understanding of the topic, and help you to decide whether you wish to attend the workshop.

Diagram 1

Trauma is biological

In order to understand trauma properly, we need to understand the biology beneath it, and specifically the nervous system’s response to a survival threat.  However sophisticated our lifestyles, we are essentially animals, and share the same responses to life-threatening situations with all other mammals. Our nervous system goes through increasing activation (i.e. it carries more energy) as the threat level increases. This is advantageous because survival depends on our ability to respond, and an active response requires energy.

Depending on our level of nervous system activation, we operate within (and can move rapidly between) one of three overall states (see also diagram):

 

 

 

 

  1. Orientation and social engagement

In this state we are relaxed and at ease, naturally aware of our environment and of others around us. Our nervous system is wired up to relate to others, and to communicate; our faces make varied expressions; our use of words is refined and verbalised with variation in tone and pitch; we are comfortable making eye contact, touching and being touched; and we have a good appetite for food – which frequently is eaten in a social situation. Consider a horse grazing in a herd. It is aware of the surroundings, but the need for alertness to external threats is minimised within the safety of the group. Everyone looks out for everyone else. Herd members utilise subtle bodily and vocal communications in order to maintain the integrity of the social group, so that internal disagreements can be swiftly and painlessly resolved. Friction rarely escalates into confrontation.  This portion of the nervous system is unique to mammals. Mammals need to be able to sustain a relationship long term in order to raise the next generation through consumption of milk from the mother. Orientation and social engagement may not be what you might think of as a survival strategy, but it is a vital one.

Our ability to socialise and communicate, maintain fulfilling relationships, experience and share a wide range of emotions, and empathise with those of others is a key part of what makes us human. Perhaps these are even the main things that makes our lives seem worth living? Certainly they form the basis of a happy family life and healthy child development.

  1. Fight or flight

When a threat arises, survival dictates that we need to either fight it or run away from it. This is common knowledge, even if the underlying biological adaptations are not fully understood. Our respiratory rate goes up to increase oxygen intake, our heart rate increases, blood flows to the muscles in preference to our gut in order to power movement, adrenaline flows through our body and we feel primed and equipped for action. Our reactions become quicker, and we become more reactive ourselves – we may more readily feel angry, rageful, fearful or anxious, and in the heat of the moment we spontaneously make immediate decisions in order to preserve our safety. In the horse herd, this represents males competing for a mate, mares protecting a foal, or the herd running from a wolf or lion.

  1. Freeze

This is a less well known state, more easily understood using an animal example. When a cat hunts a mouse, the mouse will often appear dead as soon as first contact is made, before any significant wound could possibly have been sustained. In response, the cat drops the mouse, assuming its mission is accomplished (or perhaps in shock at this unexpected development). In these vital few moments, the mouse suddenly ‘comes back to life’, leaps up and runs away. This sequence is a biological phenomenon. Paradoxically, the collapsed state of freeze is a high activation state; the animal may appear immobile, but this represents a state of extreme energy conservation in preparation for a final, last chance at escape. 

The anaesthesia of freeze involves not only inactivity but also numbness, meaning that escape is less likely to be hampered due to the pain of an injury (later on, pain is useful as it restricts movement of the affected area, facilitating healing). In people, freeze can be subtle in its outward appearance e.g. “can’t think, can’t speak”, limited facial expression, flat voice, unemotional, finding it hard to move, no energy etc. – or it can be a genuine collapse such as going faint or passing out. Some of these descriptions may be familiar to parents as they look back on their journey with OA/TOF.

How do we transition between these states?

We naturally go in and out of these phases. Remember, it’s a survival thing – it’s something our nervous system does. Both the perception of threat and the internal nervous system state response are entirely beyond our conscious control. It’s not your fault, nor is it your responsibility. Survival requires immediate action, not procrastination or debate, and evolution has ensured that we are hard-wired to protect ourselves.

So trauma is … what? 

When circumstances prevent our biology from recovering naturally from challenges, and in particular from the freeze state, we inevitably lose some of our normal range of function. Our nervous system has been primed to deal with a threat, but it has never fully recovered. Remnants of that activation pattern remain in our nervous system, and may emerge at unexpected and inconvenient moments. It’s like a spring that has been compressed, but never quite allowed to relax again – or an internal smoke alarm going off in the absence of a fire. Symptoms will be state-dependent, involving freeze, fight or flight. Some people experience one much more than the other, others will switch between both – perhaps being like superman one moment, and crashing exhaustedly the next – or fluctuating between anxiety and depression. Sadly, because these biological states impair our ability to relate to others, perhaps leading us to want to walk out (flight), become confrontational (fight) or find it hard to communicate with others and eventually withdraw (freeze), they can separate us from the very support and source of safety that we may need to recover.

When a whole family unit has been involved in a complex event (such as the diagnosis and treatment of OA/TOF), every person may be abnormally reactive or shut down, and less able to offer what the others need than usual. This is where other relatives, good friends, or sessions with a warm and empathetic therapist in a safe environment, can be invaluable.

Trauma is in the nervous system, not in the event

Two people can go through exactly the same sequence of events, but only one might end up traumatised. We commonly talk about ‘traumatic events’, but this isn’t entirely accurate because it is possible to make a distinction between the event and the symptoms. The cause of symptoms is not the event per se (if it was then everybody would suffer symptoms), it’s an abnormal reactivity in the nervous system. Different people respond differently. This perhaps brings into question whether talking about the event is necessarily the right thing to do to alleviate symptoms, or whether something slightly different is needed. More on this later!

There’s an element of both good and bad news to this. The good news is that if we can find a way to reduce the reactivity in the nervous system, we can overcome the problem. Trauma is not a life sentence. However, because different people respond with unique patterns and show different symptoms at different times and in different circumstances, the treatment may need to be highly individualised and attuned to their state in each moment. For example, taking a medicine to ‘rev you up’ is fine if your energy is down all the time, but if your energy fluctuates between high anxiety/restlessness (ie fight/flight) and depression/exhaustion (freeze), it’s not so simple.

Trauma is not just psychological

The difficulty that arises when you say ‘people respond differently’ is that it invites blame; perhaps if the person had responded more ‘intelligently’ or if they had ‘pulled themselves together’ then they would have been OK.. This is absolutely not the case. You wouldn’t accuse someone of being stupid or emotionally weak to have caught a cold, or the flu, would you? It’s a bit like that. The ‘psychological effects’ of trauma may most commonly be the ones highlighted, but thinking or cognition has nothing to do with the process of becoming traumatised – and fundamentally you cannot ‘think yourself out of trauma’ either.

Why do we get traumatised?

If wild animals were traumatised after a serious survival threat, they would be vulnerable to subsequent attacks. Recovery from such events is entirely natural. This may be really helpful to appreciate when you’re in the thick of it.

We humans are so conditioned to reject abnormal behaviours that we may seek to struggle on when we are tired, try to keep still if our body shakes or trembles, hold back feelings, or feel we have to remain quietly in a situation when our natural impulses feel more like running, kicking or screaming. We also may find the freeze state frightening and try to override it rather than letting it complete naturally (“This can’t be happening!”). The problem is not freeze itself, it’s our response to it, and our resistance to letting natural bodily processes take their course. Other contributors can include the response of others who try to ‘pull us out of it’, or circumstances that mean we are continually being challenged and cannot take the necessary time out to respond to our bodies. A caught mouse often moves explosively and chaotically when coming out of freeze, or an injured animal will tremble and shake. These behaviours represent a nervous system ‘re-set’ process (transitioning through the fight/flight physiology) which signals recovery and ultimately restores function without undue after-effects.

Note that recovery can only happen when the individual is in a safe environment and not if there is a continuing threatYou can’t ‘manufacture’ a recovery from trauma. It’s not a head-driven (‘top down’) process where you have to learn X or understand Y or perform task Z – and you can’t just ‘let it all out in one go’. It’s a natural process of delving in and out of things, of respecting your instincts to rest or be more active, and having support from someone else (or e.g. a cat or dog i.e. another mammal) who can offer a calming and distracting influence to keep you out of the danger zones. Remember, there is safety in the herd, into which we were born … and recovery from trauma is your birthright.

Diagram 2

Early trauma

A newborn baby has an immature nervous system in more ways than merely not being able to walk, talk etc. Development of a healthy social engagement system is dependent on having nurturing caregivers who are able to respond to and calm the child’s distress as a result of hunger, thirst, digestive movements, temperature control, physical discomfort etc. The child is not able to do this for him or herself, and is likely to go into a freeze state if their cries (a fight/flight type response) go unheeded. An appropriate response supports the child’s nervous system to develop the ability to self-soothe (known as self-regulation), and represents a key component of what psychologists refer to as ‘attachment’. Very young babies may seem to alternate between noisiness/crying and silence/sleep, but over time their communications become more nuanced, and parents understand what their cries ‘mean’.

Building resilience 

Later on, there becomes scope for a non-verbal ‘dance’ e.g. peekaboo games. These not only build relationship and social engagement capacity, they also build resilience. Starting from a relaxed state of social engagement, mother disappears (causing activation which may include freeze) but then reappears (calming the nervous system down). With mum’s help, an initially distressing experience in which fight/flight responses may appear becomes fun i.e. the bodily sensations of activation becomes enjoyable rather than a threat.

Resilience is not the ability to endure long periods of difficulty (which may induce freeze), it is the ability to harness the energy of fight/flight activation for useful action, or succumb to freeze when that activation threshold is reached, and then recover fully.

The tendency to freeze

Babies and children who are left to cry it out, or by necessity spend long periods in a challenging environment e.g hospital, will develop a nervous system prone to lapsing into freeze, and with less capacity for social engagement. The devastating effects of this at its worst was demonstrated many years ago, in orphanages; babies who had only their basic physical needs met grew up to be severely disturbed, living in their own worlds and unable to fit into society. 

Serious medical/surgical interventions at a young age, combined with potential physical isolation in incubators, are particularly challenging to the immature nervous system, but with appropriate support (attentive parenting including touch and connection) it is entirely possible for the child to catch up.

Diagram 3

Trauma is not a life sentence 

Remember, trauma is not in the event, it’s in the nervous system. Merely the fact that children with OA/TOF underwent a major procedure as an infant does not condemn them to a life sentence. Reports of adults who were born with OA/TOF living fulfilling lives in which they build relationships and start a family proves that even the most apparently devastating of early experiences need not have dire long term effects. But you can be sure that as children these people will have received lots of attuned nurturing and support.

Not many decades ago, some medical professionals interpreted a lack of response to interventions (likely freeze) to mean that babies did not feel pain. My own hospital records from Great Ormond Street indicate that on the day I was born I was intubated while still conscious, and no specific pain relief was administered at all in association with or after surgery. Drugs may have been given to paralyse children before surgery at this time, but anaesthetists today recognise that successful anaesthesia requires attention to many different aspects including good analgesia to prevent or minimise pain.

Supporting the nervous system

The key reparative component here is attunement. It’s not a ‘one size fits all’ situation. Here, mother (or father) does indeed ‘know best’, because they become familiar with what the baby likes or dislikes and can respond accordingly. 

Many intensive care units encourage parents to hold children, which can help both child and caregiver to regulate their nervous systems together. Comforting touch combined with subtle things like a parent’s smell, heartbeat, breathing pattern and cooing voice (making noises in a sing-song way) help the baby’s nervous system to calm – and can help the parent too. The two nervous systems reflect each other; this phenomenon is known as co-regulation.

I sometimes cringe when specific procedures like infant massage are ‘prescribed’. It is potentially so easy to touch another person and provoke them into freeze (especially if interventional trauma has been part of their history) – and then that freeze be mistaken for calmness. Massage may easily become a procedure to go through – a treatment sequence – rather than being a form of nourishing touch and communication. For children who have endured multiple medical procedures this risk is likely to be especially high, and a more relaxed form of holding/cuddling/stroking may be more acceptable. As always though, one size does not fit all!

To recap, the essential requirement is that the recipient is appropriately soothed and not overly challenged by any intervention, and every individual will have different preferences in this respect. See diagram.

Diagram 4

Complicating factors for parents

Unresolvable dilemmas

Parents who are in challenging circumstances (e.g. your child in hospital) may find themselves in an unresolvable dilemma. For example, “Is it better to stay at hospital with my unwell baby, go home and look after my other child, comfort my partner or look after myself?”. Others may advise you in conflicting ways e.g. “Just let the doctors get on with it” vs “You must be an advocate for your child” – no mind possible differences in opinion between medical professionals. Such situations can in themselves be freeze-inducing – from a survival perspective you could describe it as like ‘being torn in two’, or perhaps more accurately being subject to an inescapable attack where there appears no way out of a tight corner.

Ongoing trauma and lack of safety 

Hospital experiences may be both unnatural and prolonged with repeated procedures and extended hospitalisations. If animals in freeze are moved or further interfered with, then it takes far longer for them to come out of freeze; as before, a lack of safety precludes recovery.

My recommendation is to look after yourself in whatever way feels right for you. Use what support you have around you and don’t be reluctant to accept offers of help. If your mind is foggy, write things down! Inevitably it is a tough time and you will recognise yourself going through the various states described above, but anything you can do to make it more comfortable for yourself is worth trying. One’s mind can play havoc with your state here. Googling for information could either reduce anxiety or feed your worst fears, and you’ll have a lot of free time in which to imagine all manner of worst case scenarios. It’s natural and healthy to want to seek out a resolution to your situation, but the volume and variability of content on the internet may be overwhelming yet strangely addictive. This can suck you in and become a vicious cycle.

Here is where the orientation bit of orientation and social engagement can be useful. Keeping grounded means being aware of your environment in the here and now – not living in your head, in the past or future. Other people, the need to eat/drink, daily routines etc are important anchors to reality, but simple things like taking a walk down the corridor, noticing things around you, taking some fresh air or just watching TV are beneficial. We may talk of these things as merely distractions (good or bad!) but often they result from a natural instinct to self-regulate.

During difficult moments, it can be very helpful to notice the direction of a partner’s gaze and gently enquire about what they notice. Such cues often go unnoticed, but when attended to, the experience of looking at what your eyes are drawn to can bring de-activation and a deeper breath of feeling of relaxation. The important thing is more likely to be a colour, shape, or abstract characteristic rather than something with specific meaning or am associated storyline. Remember, recovery from trauma is your birthright. 

Dynamics between two people both experiencing the aftermath of a serious event can lead to some very challenging dynamics – see diagrams.

The problem of freeze 

This likelihood of freeze happening during your journey with an OA/TOF child begs the question of what to do with someone who is in freeze. The key thing is not to provoke further. You seriously cannot forcibly pull someone out or wake them out of it. They may be able to over-ride the state and put together a response, but it likely won’t be a genuine recovery. Essentially they have too much going on, and adding another demand only adds to that load.

Some people find another person in freeze difficult to be with. They may become literally unable to communicate (their nervous system doesn’t permit it) even if they are normally verbally competent and are apparently alert at the time. They are ‘not themselves’. 

Think of just being with them – give them time – meet them where they are, with an undemanding, soothing voice or gentle touch. Remember, safety is needed for the situation to de-escalate, and the nervous system is the only thing that can determine when the time is right. It’s a felt thing, not something you decide for yourself. You can only set the right conditions, and wait.

It’s predictable that as their nervous system calms, they will drop into the fight/flight phase. They may suddenly become active, or be angry or afraid. This is not personal! There may be reasons to be angry, but their response is fundamentally being fuelled by biology. Meet that too: acknowledge, justify or reflect on their anger or fear in some way – if you counter it then you are merely adding fuel to the fire. It can be a good strategy to move e.g. go for a walk in such moments. Doing something active together would be ideal.

Only when the nervous system drops down into the social engagement phase will you be likely to find a warm relationship possible, so that any difficulties can be discussed more calmly and rationally. Cognitive therapies e.g. CBT can however be useful in recovery, providing you with understanding of symptoms and coping strategies to use in everyday life.

How do we heal from trauma?

When we are traumatised, particular and often unidentified happenings – either inside (i.e. body sensations, memories) or around us (people, tone of voice, specific circumstances e.g. location, smell or temperature) – can trigger sparks from the original event in such a way that we are essentially hijacked by our nervous system.

For TOF parents, this might happen in association with return visits to hospital. For children with OA/TOF, it may be seen in relation to subsequent medical procedures, or in association with eating/swallowing. These examples make sense to our minds, but there will be many other instances where our experience goes awry without an obviously explainable cause. That’s just how trauma is.

Freud termed the phrase ‘repetition compulsion’. There’s an aspect of us that seeks to complete things that are incomplete, so experiences we didn’t get over spontaneously recur as a way of getting over them. It’s not some new agey ‘lesson to be learned’, it’s just how we heal. A negative aspect of this can be intrusive flashbacks and a lack of ability to function in normal life, but if handled appropriately, little by little, these occurrences are the very thing required for healing.

Let’s go back to some basics

It is totally normal that there will be a natural recurrence of memories after any event, each time becoming less and less potent. Our bodies are set up to heal in this way; it’s not so much a case of ‘getting it out’ as letting remnants of the experience gently play themselves out. We will inevitably be upset by difficult experiences and this is a totally natural way to get over things and move on.

If our distress is strongly emotional, then time spent recounting parts of that event with someone who can support us, normalise our experience through shared stories, and help us to feel less overwhelmed by the whole thing may be all we need to recover. TOFS helps to provide a community within which it is appropriate to experience this.

To my mind, both of the above examples could either be seen as not being traumatised, or as naturally recovering from trauma. The recovery process doesn’t really need a label, it just happens over time.  When symptoms are severe or become long-lasting, we will need support when we are ‘triggered’ and we may need to seek professional help. This is where accurate and experienced attunement as well as an appropriate theoretical framework is required. It’s also where contact with TOFS and additional information may be ‘too much’, which is something I attempted to address in various ways in The TOF Book.

Recognising and understanding freeze

My past experiences of counselling/psychotherapy failed to appreciate my freeze state, and I was pushed to communicate, make eye contact, show emotions and be more active (and criticised for not doing so). This pressure merely exaggerated the freeze. When you’re neurologically unable to respond to such requests, it is easy over time to conclude that you are a hopeless case.  Understanding freeze is the key thing that SE excels at, and it’s been a huge relief to be understood and met appropriately.

Retraumatisation

Another risk is that the survival energies associated with trauma become overwhelming, and retraumatisation is the result rather than recovery. Becoming wildly emotional, or cathartically beating a cushion, can cause the release of addictive hormones in the body, so that we become chemically dependent on these behaviours rather than them acting as a vehicle to recovery.

If you give morphine-blocking medications to war veterans, their flashbacks and bad dreams reduce in frequency and severity. Once our internal chemistry becomes more complex in this way, we may become more and more drawn towards things that keep the pattern going and less likely to be able to recover without outside help. Short term medication may help to break this pattern, and/or some form of therapeutic intervention.

Less is more 

If counselling is done gently, there will be small waves of emotion, and calmer moments between them. The act of talking inherently takes time, which may create a small safety net in itself – generally you run through a story with a less charged introductory portion right through to the end. It doesn’t ‘come all at once’ in the way a strong memory fragment can. Questions from the therapist may also be useful to avoid overwhelm by taking you off down distracting side-tracks from the main storyline, as well as being a communication of interest and caring, i.e. support and soothing. The 50 minute session time and intervals between sessions also create a container within which exposure to strong experiences can be limited.

Research surveys repeatedly suggest that key components of successful therapy are the personality of the therapist (i.e. that the client felt received by the therapist) and that emotions were experienced as a part of the process (to experience emotions in a non-overwhelming manner requires that you are not in freeze and not in a highly charged state, i.e. you have access to the social engagement phase).  Yet again, we see that trauma is in the nervous system and not in the event, because merely recounting a sequence of events alone will not bring recovery (that’s likely to be heavily influenced by freeze); it has to be done in a way that involves the nervous system and allows us to fully process what has happened. The type of therapy therefore may matter less than the nervous system dynamics that take place in the session. Because it’s primarily a biological problem, or some people with relatively mild symptoms, a good support network and in the absence of major ongoing challenges, just bodywork (massage, craniosacral therapy etc) with an attuned practitioner may be enough.

Summary

Information about trauma is definitely useful, not only because it may help to explain past experiences and difficulties, but it may help you to choose appropriate action for yourself or for another person. Trauma is not a life sentence. Our biology is a beautiful thing and generally our natural impulses will include ones which will set us on the road to recovery and renewed resilience. Unfortunately, our conditioning or our current circumstances may lead us away from following these instincts.

Inevitably there will be some ‘muddling through’. Progress is rarely perfect in the real world! But there are many things that can provide comfort and relief for our nervous system. Support and company are vitally important, not just ‘nice’. As mammals, we are innately social beings. We need things like touch, hugs, holding/cuddles, soothing words, just being with someone, having our physical needs met, sharing emotions, giving/receiving empathy and taking breaks.

Described as above, recovery may seem easy – and it can be – but with ongoing stresses and challenges in the face of our hectic lifestyles and societal pressures it can be hard to find the time and space required. Minor responses of fear and anger can have important functions in helping us to remove ourselves from (fear) or confront (anger) threats so that our situation becomes safer and our nervous system can calm down. If these early signs are ignored or cannot feasibly be responded to, pressure builds internally, our fear and anger may become uncontrollable and lead us to do things we regret ­ or we may go into freeze, become numb, uncommunicative, closed to relationship and withdrawn.

There are endless possibilities, but essentially self-help comes down to listening and paying attention to your needs as much as is possible. This is really all you need to know! Getting the time and space required however may require considerable communication skills with others around you, who may also prove to be challenged and reactive or unresponsive.

If you need outside, professional help, don’t hesitate to seek it; social engagement and orientation to the world around us is not a weakness, it’s the state that defines who we are as functioning human beings and makes our lives worth living.

References

Useful references include Peter Levine’s books ‘Waking the Tiger’. ‘In an Unspoken Voice’, ‘Trauma-Proofing Your Kids’ and ‘Trauma Through a Child’s Eyes’.

I’m also developing a whiteboard animation video to explain this topic.

My experiences with SE have been in the USA (in person or by Skype) but there are growing numbers of SE practitioners (SEPs) in the UK. See traumahealing.com

 

Diagrams

Diagram 1

Diagram 2

Diagram 3

Diagram 4

 

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