Trauma, Maltreatment, and Developmental Impact
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Medical Trauma—When Caring Hurts
The Potential for Trauma in Medical Treatment
Medical care, meant to provide help, is not often thought of in the context of developmental trauma. Nevertheless medical interventions do carry potential for traumatic impact, especially if they involve pain, separations from caregivers, fear (in the child and/or caregiver), invasive procedures, and repeated medical events in chronic conditions, cancer, and injuries that require multiple proce- dures (Bryant et al 2004, Carlsson et al 2008, Carter 2002, Casey et al 1996, Drew 2007, Gil et al 1991, Johnson & Francis 2005, Kassam- Adams et al 2005, Kazak et al 2006, Liossi 1999, Pillai Riddell et al 2009, Robson et al 2006, Saxe et al 2005, Shaw et al 2006, Simons et al 2003, Varni et al 1996, Winston et al 2002, William et al 2004, Wintgens et al 1997).
The objectives of medical care are to save life, bring relief, and/or improve function. Health personnel go into medicine to help children, not to traumatize them. Parents understand that what paramedics, doctors, nurses, physical thera- pists, etc. do is for their child’s benefit. It is why they allow medical ministrations even if these temporarily hurt or distress the child. Young children, however, often do not understand medical staff motives, the need for physical intrusions, or the consequences of avoiding them. Even children who understand that doc- tors are generally helpful may struggle to hold that knowledge if they are ill, afraid, feel misled, or see their parents afraid (Bryant et al 2004, Carter 2002, Dell’Api et al 2007, Kuttner 2010, Saxe et al 2005, Schäfer et al 2004, Shaw et al 2006, Winston et al 2002, Ziegler et al 2005).
Emergency care is often frightening. There may be real or perceived sense of threat to life and the integrity of one’s body. Patients may be frightened and feel helpless and uncertain. Pain itself can be terrifying, exhausting, and overwhelm- ing. It can make it harder to focus and understand what is going on. Medication side effects can dim awareness, limit processing, and make events feel discon- nected and unreal. Others around the patient may be overwhelmed as well,
Indirect Trauma
Medical, Intrauterine, Environmental, and Societal Trauma
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worried for potential loss of life or the witnessing of agony or called to make important decisions about difficult things.
The situation can be even more overwhelming for children. They may be too young to understand what is happening. They can be terrified by bleeding because they may not know that it can be stopped. Preschool children often interpret words literally: They may think that a broken arm would fall off, that having a ‘bug’ means that they have roaches inside them. A respirator may sound like a monster. They may believe surgery is where the doctor will cut them up like vegetables in a salad. Because children often believe that to say things makes them real, they may be too frightened to articulate their worries, and adults may not realize the extent of or the specifics of the child’s terror. Children old enough to comprehend medical interventions may be too sick or injured to do so. Medi- cations can make them feel odd and oxygen masks can feel frightening and iso- lating. If they try to remove masks to speak and a nurse places it back on, children might believe that they are no longer allowed to talk or that talking will kill them.
They may feel angry, confused, helpless, and afraid (Dell’Api et al 2007, Kuttner 2010, Saxe et al 2005, Winston et al 2002).
Medical crises change the rules: Mom and Dad allow others to hurt them.
They may leave them with strangers with gloves and hidden faces to do scary things that hurt. If doctors shoo the parents out, the child realizes that parents no longer make the rules—who would protect her now? Rules about private places and one’s body being their own suddenly disintegrate, but instead of fighting the people who break those rules, parents go along with what the hurting people do.
They may even thank them for what they are doing. Thank them?!
An overwhelming situation can become even more so if the parents them- selves are very distraught or indisposed. For a small child to whom parents are omnipotent, this tilts the world on its axis. Scared caregivers may be unavailable to provide comfort or not do so in a familiar way or convincingly enough, add- ing to the child’s confusion and terror. Medical crises in children can contain all the ingredients for trauma: overwhelm, confusion, pain, helplessness, loss, loneliness, fear, and risk of dying (Bryant et al 2004, Carter 2002, Kassam- Adams et al 2005, Kuttner 2010, Robson et al 2006, Saxe et al 2005, Schäfer et al 2004, Winston et al 2002).
Unlike accidents, which many people agree can be terrifying, chronic illness and conditions that require repeated interventions tend to be seen as something children “get used to.” Some indeed do, but for many the overwhelming aspects of medical care are not necessarily relieved by familiarity. In fact this very famil- iarity can increase anticipatory anxiety and replay previous stress, making sub- sequent care increasingly overwhelming (Kuttner 2010). Even more so if sick children believe that their predicament is somehow their fault or they deserve it (e.g. when adults say things like “it is for your own good”). Lack of visible fear should not always be interpreted as dissipation of distress. Children may try
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very hard to be “good”—not cry, fuss, or struggle—if this reduces their parents’
distress. They may numb themselves to what is happening, pretend it is not hap- pening to them or is not real, or do whatever they must do to manage (Carlsson et al 2008, Casey et al 1996, Diseth 2006, Drew 2007, Fuemmeler et al 2002, Gil et al 1991, Johnson & Francis 2005, Liossi 1999, Mikkelsson et al 1997, Speech- ley & Noh 1992, Varni et al 1996).
The Prevalence and Scope of Potential Medical Trauma
Situations that may result in medical trauma are anything but rare. Each year, one in four children in the United States receive treatment for an injury (Kazak et al 2006) and about 2% of children suffer migraines (Stafstrom et al 2002).
Data from 2012 report that 3% of babies born alive had birth defects and that 8% of newborns stayed at the neonatal intensive care unit (NICU) more than six days (US Department of Health 2013b). It is estimated that one of every 640 young adults is a survivor of childhood cancer (Drew 2007), with new can- cers being diagnosed in thousands of children each year. Based on data from the Organ Procurement and Transplantation Network, about a thousand chil- dren a year receive transplants, with more children awaiting one (http://optn.
transplant.hrsa.gov), many of whom require ongoing and often invasive treat- ments. About 15–20% of children suffer chronic pain, and one third of children manage chronic conditions, which may require medical interventions (Kuttner 2010, Newacheck & Taylor 1992).
While not all medical interventions have equal traumatizing potential, and not all children are vulnerable to medical stress in the same way, some types of medical interventions have high risk for trauma. These include: cardiac emer- gencies and surgeries, burns (painful scrubbing, grafts, dressing changes, surger- ies, physical therapy, constriction, disfiguration), orthopedic injuries (restricted mobility, surgeries, painful physical therapy), asthma (40–50% of children suf- fering from asthma meet criteria for anxiety), cancer and bone marrow trans- plants, growth deficiencies, dental and facial abnormalities, congenital illnesses (e.g. osteogenesis imperfecta, cystic fibrosis, sickle cell anemia), transplantation, and ongoing life- sustaining treatment. Chronic conditions as well as ‘one- time events’ might be traumatizing to a young child, and even one- time events can require repeated medical care (e.g. burns, car- accident injuries).
Aspects of Medical Care that Can Be Especially Traumatizing
Young age increases risk for trauma, and the younger the child is at the time of the medical trauma, the higher the risk for overwhelm (Cozolino 2006, Does- burg et al 2013, Gaensbauer 2002, Siegel 2012, Simons et al 2003, van der Kolk 2014). Young children often find it difficult to differentiate the trauma itself from
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the medical treatment that followed it. The (understandable) overwhelm of par- ents can further terrify the child, as can the parents’ “participation” in causing pain (e.g. a parent applying pressure to an injury or restraining the child fearing a spine injury) and their allowing others to cause the child pain (Diseth 2006, Wintgens et al 1997).
Other risk factors include prior exposure to trauma and stress, behavioral or emotional problems (can make regulation difficult, reduce tolerance for stress, and increase risk for restraining the child), multiple traumatic elements (e.g.
injured parent too), witnessing intense fear in caregivers, separation from the caregiver during the event or the medical treatment, high level of pain, insen- sitive medical staff, and a sense of social isolation or lack of positive support.
Developmental delays that make processing difficult also increase trauma risk, as do attachment challenges which make it hard for the child to use the adults to help regulate distress (Doesburg et al 2013, Fuemmeler et al 2002, Koomen &
Hoeksma 1993, Newacheck & Taylor 1992, Ødegård 2005).
Medical intervention can traumatize parents, too. Caregivers may be terrified by the possible loss of their child and feel helpless to alleviate the child’s pain and terror. The illness or injury and what it entails may feel overwhelming and parents might experience clinicians as rushed, insensitive, or controlling (Bry- ant et al 2004, Carter 2002, Maciver et al 2010, Shaw et al 2006). They may be terrified if the staff expresses (or is interpreted as expressing) lack of hope or care. Parents may also feel enraged at the circumstances that led to the medical crisis and be (rightfully or not) furious with each other, others, or even with the child. Parental overwhelm can increase the child’s anxiety in a feedback loop of mutual distress.
Lack of preparation can make even planned procedures feel terrifying to a child who does not know (or did not understand) what to expect. Both care- givers and health personnel may minimize procedures or not mention them ahead of time, believing that the child does not need to know or worrying about resistance and ‘lack of cooperation.’ Some parents are told that the child would
“forget it anyway.” Lack of preparation and understanding combined with the alarming medical setting can cause overwhelm and distrust.
Children’s Response to Overwhelm
Lacking the ability to remove themselves from an overwhelming situation, chil- dren often dissociate instead. Symptoms experienced by children during and fol- lowing medical trauma include numbing of sensation and feelings, derealization (feeling like the world around them is not real), depersonalization (feeling like they are not real), dissociative amnesia (not remembering what happened), and shifts in ego states (i.e. feeling it happen to ‘someone else’) (Carlsson et al 2008, Drew 2007, Kuttner 2010, Saxe et al 2005, Schäfer et al 2004).
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Dissociation may lead to children’s distress being missed. Some children who “become good” and submit to medical ministrations may have dissociated after realizing that fighting is futile. Some feel guilty about causing distress to their parents and may push away their own distress in attempts to regulate their parents’ distress (Carlsson et al 2008, Drew 2007). Young children may believe that if they pretend that nothing is happening, everything would be the way it was before—‘making it not happen’ may be the only thing a child feels she can do.
Children may continue to dissociate after the medical intervention itself is over, but because posttraumatic responses present differently in children than in adults, their reactions may be missed or misinterpreted. Children tend to have flashbacks that are less episodic and more somatic (Gaensbauer 2002). Also, where adults (and adolescents) with posttraumatic stress disorder (PTSD) may suffer a sense of foreshortened future, young children’s very concept of future has yet to evolve and they tend to show more cognitive- perceptual distortions (omens, guilt) (Silva 2004). Traumatized children may suffer feelings of estrangement and can present with changes to imagination, fantasy, and symbolic expression, be less available for play, and become more rigid (Silberg 1998, 2013). Their self- image and self- esteem may suffer too, especially when facing chronic illness, disfigurement, and disability (Carlsson et al 2008, Drew 2007).
Medical Trauma and Attachment Disruption
Secure attachment to sensitive caregivers is protective, but even good attachment can be disrupted by medical interventions (Koomen & Hoeksma 1993, Ødegård 2005). Disruption may happen if children are so overwhelmed that they can- not make use of the parent’s care. If children continue to dissociate at trauma reminders, attachment difficulties can persist. Disruption can take place if the parent is physically or psychologically unavailable (e.g. parent is also injured), as well as if the parent becomes part of the trauma (e.g. restrain or administer intrusive treatment to the child). Children may not know how to integrate their need for the parent and their rage at the parent for the betrayal: How can they trust the parent to comfort them when this parent causes pain and fear (possibly the very pain and fear the child needs comforting from)?
The belief used to be that it was best for the child if the parent—whom the child ‘knows and trusts’—administered intrusive procedures (e.g. restrained the child, administered home treatments of dressing changes, stretched the anal sphincter). Increased awareness of the realities of attachment disruption is lead- ing more pediatric professionals to recommend that someone else administer treatment (e.g. a visiting nurse), to help preserve attachment (Diseth 2006).
Similarly, until not too long ago, parents were discouraged (or outright for- bidden) from staying with their hospitalized children (Koomen & Hoeksma
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1993). It was believed that children were more cooperative without their parents around (i.e. likely numb and dissociated). Whether for tonsillectomy and appen- dectomy or following serious accidents, children only saw their parents during visiting hours. For some—especially the very young—the separation itself was traumatizing.
When Mary was three, she was hospitalized for surgery on her urethra. Her par- ents believed she was “too young and would not understand anyway,” and so did not prepare her for the procedure. She was separated from them at the hospital without explanation. In her memory, terrible people did painful things to her privates and no one told her why. Too young to have a concept of time, she thought the hurt- ing things would never stop. She felt helpless and terrified. She could not even see what they were doing. If she cried or struggled, she was simply held down by more
“white people” (i.e. in scrubs and caps) and admonished that her “fussing was mak- ing it take longer.” When her parents finally came, they smiled and petted her and spoke about her “needing to rest and get her strength” and how she “must be good for the nurses who were making her better.”Mary was confused—the nurses didn’t make her feel better—they made it hurt. She needed her parents to comfort her and was also furious at them for leaving her with the nurses. When she cried, her mother got upset and left the room and then her father left, too. Mary believed they did not take her home because she cried. She did not cry again when her parents visited. She tried very hard to be good, and believed that being good was why she was finally taken home, but something in her broke: She realized she could not rely on her par- ents for help. Not when it really mattered.
Once home, the hospitalization was not discussed. It involved “privates,” and so could not be talked about outside the house either. It was as if the whole thing did not happen. Mary thought maybe it was a bad dream and didn’t bring it up. She just became numb and sometimes felt unreal or like she was “looking at everything from outside.” The numbness continued and teachers complained she was a “space cadet” and should pay better attention. Her parents chastised her for daydreaming and forgetfulness.
Reducing Risk for Medical Trauma
Medical treatment cannot always be preventable or negotiable, yet there are ways to reduce the risk for traumatization even in difficult medical circumstances.
Allowing parental presence can lower anxiety in the child, as can offering dis- traction, breathing exercises, and possibly medications. Effective pain manage- ment and age- appropriate explanations are also important, as is allowing choice whenever possible (e.g. which bandage, who would carry them into the operat- ing room, whether to first ‘examine’ the teddy bear). Reducing parental anxi- ety by keeping parents informed and calm improves regulation and preserves attachment in parent and child (Kuttner 2010, Wintgens et al 1997).
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There is increasing awareness of the importance of psychoeducation, training, and screening protocols for pediatric medical traumatic stress (PMTS) across conditions and ages (Kazak et al 2006). Identifying and predicting PMTS—
including detecting families and patients at high risk—can help with assessment and intervention. Increasing awareness among medical personnel is crucial (Carbajal et al 2008, Pillai Riddell et al 2009, Simons et al 2003, William et al 2004, WHO 2013, Ziegler et al 2005), including educating about how the subjec- tive experience rather than objective measures of disease or injury is important to psychological outcomes.
Where medical trauma has occurred, therapeutic interventions can assist children with exploring their experience and the meaning through drawing, play, dramatization, metaphor, and art. Cognitive Behavioral Therapy (CBT), relaxation therapies, pet therapies, and pharmacotherapy can also help. Indi- vidual psychotherapy and family therapy can address the traumatic experience, attachment disruptions, and family dynamics. Group psychotherapy can reduce estrangement and isolation (Kazak et al 2006, Wintgens et al 1997).
An individual child’s experience is more indicative of trauma than a particu- lar medical issue (Kazak et al 2006). However, some medical and environmental histories can be especially relevant to developmental trauma and its host of com- munication and regulation issues. The remainder of this chapter will explore some such histories and the ways they can impact children’s perceptions, com- munication, and regulation.
Medical Trauma: Prematurity
Prematurity carries high risk for medical and developmental complications.
Among those risks are motor impairments (e.g. cerebral palsy), sensory impair- ments (e.g. hearing and vision issues), cognitive and language delays, learning disabilities, neurobehavioral problems (e.g. difficulties with regulation, attention issues), and social/relational complications. These issues are largely attributed to premature nervous system difficulties (Doesburg et al 2013). In addition, the realities involved with premature birth (e.g. NICU) increase risk for overwhelm and its developmental aftermath (Browne 2003, Carbajal et al 2008, Simons et al 2003). Light and noise in the NICU can disrupt normal hormonal and diurnal cycles, and the sounds of machines (respirator, beeping) may mask caregivers’
comforting voices. Babies’ movements can be restricted, and pain from medical procedures (suction, heel lance) produces physiological and behavioral disorgani- zation that can sensitize the baby to future pain (Simons et al 2003). Rocking and holding normally help newborns regulate arousal, but premature babies have less opportunity for these attachment interactions. The disruptions come at a time when sensory input is the main avenue for laying down neuronal pathways and developing attachment and can affect behavioral and physiological organization