By Dr. Winnie Chung, Registered Psychologist

As you may all know from personal experiences, a child’s heart condition can impact the entire family in profound ways. In this article, I will discuss ways for children, youth, and families to cope with a heart condition and associated medical interventions, and to minimize risk for developing longer-term trauma-related mental health symptoms.

What is pediatric medical traumatic stress?

A young child hugging a three-dimensional heart shape.The National Child Traumatic Stress Network provided a definition of pediatric medical traumatic stress (PMTS) a number of years ago: “A set of psychological and physiological responses of children and their families to pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences.”[1] From initial diagnosis (or beyond), to hospitalizations, to treatment-related experiences, to ongoing tests and procedures, there are unfortunately many medical experiences, necessary as they are, that can be traumatic for children and families coping with a cardiac condition.

There are many different ways that PMTS can affect individuals. Some common reactions include symptoms of arousal, re-experiencing, and avoidance. Other reactions can include changes in one’s thinking, behaviour, and emotions, as well as dissociation, or a sense of being disconnected from reality. For individuals who experience symptoms of hyperarousal, they may be more easily startled than usual, become extra vigilant to signs of something being wrong or dangerous, and react more strongly to different sensations in their bodies and sights and sounds in their environment. For those with re-experiencing symptoms, they may find themselves thinking a lot about the trauma, experience intrusive memories of a frightening experience, and have nightmares and flashbacks of the trauma. Individuals can also experience avoidance symptoms, where one tries to not think about or talk about the frightening experiences they have had. They may seek to stay away from places, people, or activities that remind them of the trauma. Other traumatic stress symptoms can include changes in one’s memory, attention, and ability to manage challenges. Individuals may notice differences in their mood, where they may be more irritable or sad than normal. They may feel more anxious and worried, and sleep can become disrupted. Some also feel disconnected from the world around them and may feel like they are in a dream or in a daze.

How common are these experiences? Is this the same as post-traumatic stress disorder, or PTSD?

It is important to know that many individuals experience some of these symptoms following medical trauma. However, most people do not go on to have long-term significant stress reactions. Some individuals do have persistent symptoms that impact their functioning in significant and distressing ways; these are what health professionals describe as symptoms of acute stress disorder (symptoms that last from several weeks to one month) or post-traumatic stress disorder (PTSD; symptoms that last for more than one month). A qualified mental health professional such as a psychologist or psychiatrist can help identify whether these diagnoses are applicable to your child or you.

Research suggests that between 12% and 31% of children with congenital heart disease may develop PTSD following cardiac surgery.[2] Among parents of children with congenital heart conditions, up to 30% of parents are reported to have symptoms consistent with PTSD, and over 80% experience prominent trauma symptoms.[3] In addition to trauma symptoms, 25% to 50% of parents may experience elevated symptoms related to depression and anxiety, and between 30% and 80% of parents have reported significant psychological distress.

Regardless of whether someone meets diagnostic criteria for a “disorder” or not, if you and/or your child are experiencing emotional or other difficulties that impact your daily functioning, it is helpful to speak with your health care team about your concerns.

What are some practical ways to cope with medical trauma and prevent lasting stress symptoms?

Although one has little control over the diagnosis of a heart condition and the interventions that are needed, there are certainly practical things that families and health care providers can do to help minimize negative psychological impacts and promote adaptive coping and adjustment. Let’s focus here on ways to foster resilience and coping at the time of a potentially traumatic medical experience, after the experience, and ongoing interventions that can be considered.[4] These ideas are not exhaustive, and some of them apply more to children and youth, while others are more for parents and caregivers. I strongly encourage families to work closely with their health care team to develop strategies and coping plans that are tailored to your family.

At the time of a medical experience (e.g., during a medical test or procedure, during a hospitalization or medical appointment)

  • Have control. During a frightening and scary experience, having a sense of control is important. This can look like giving your child a choice about who and how many people they want present in the treatment room, what they would like to do to occupy their attention during a procedure, and how much information they would like about their condition or the intervention they are receiving. Encourage your child to express questions or concerns they have, either to you as caregivers or to their medical team. Work with your health care team to figure out how to explain medical information to children and youth in a developmentally appropriate way. For parents and caregivers, having control can look like being given the amount of information you want in the way that you prefer (e.g., having information written down, receiving information in small bits, having information repeated several times), and having the support people that you need when receiving medical information.
  • Build trust and confidence. Remember and remind yourself and your child that you are being well taken care of by their health care team. As scary as a procedure or treatment experience may be, having the reassurance that your medical team members are experts in what they do can ease some worries and fears. Of course, you should feel free to share any concerns or questions you have openly with your medical team.
  • Focus on basic needs. Eating, drinking, and getting adequate rest and sleep can often become very challenging in stressful situations. For children and adolescents undergoing medical interventions, their condition and treatments themselves can interfere with these basic needs. For parents and caregivers, it is important to offer yourself permission to take care of your own needs, and to recognize that your wellness in and of itself is critical to prioritize and also allows you to care for your child in the ways that they need.
  • Receive support. For children and youth undergoing procedures or experiencing other medical-related stress, the presence of parents, caregivers, or other support individuals can often be helpful. Stay connected with friends or other family members, whether that is virtually or in other ways.
  • Understand normal reactions to trauma. It can be helpful to educate yourself and your child on what are normal and expected emotional reactions to the stressful situation that you are in. It is normal to experience a range of different emotions, and it is important and helpful to acknowledge and be aware of these feelings.
  • Use what already works! Consider what typically helps you and your child cope with difficult and stressful situations outside of the medical setting, and use those strategies in the medical context where possible. Are there comfort objects, games and toys, or other activities that soothe your child or offer distraction? Are there other strategies and activities that are helpful, such as calm breathing, visualizations, reading engaging books, watching shows, listening to a favourite playlist, journalling, taking walks, or talking with loved ones?
  • Involve psychosocial supports in health care settings. Ask about services from child life specialists, medical psychologists, and social workers in your health care setting who can help support your child and your family with medical procedures, appointments, and hospitalization.

Following a difficult medical experience

In addition to the above…

  • Monitor mood and behavioural changes. Some increase in anxiety, minor behavioural regression (e.g., more clinginess in younger children), and mood fluctuations can be an expected part of their medical experience. Work with your child’s health care team to monitor these symptoms and promote coping.
  • Focus on social interactions and routine. As medically appropriate, continuing to stay connected and have positive and supportive interactions with loved ones can be very helpful. If possible, establish a daily routine to help each day feel more predictable—this is important for children, youth, and caregivers alike.
  • Be mindful of the mutual impacts of children’s and parents’ coping. Children’s and youth’s emotional responses can often mirror those of parents and caregivers, particularly in times of stress and uncertainty. I encourage parents and caregivers to take opportunities to share their emotional experiences openly with other trusted and supportive adults. When interacting with your child, encourage open conversations about any worries, sadness, fears, or frustrations they may have, while also focusing on confidence and trust in the care that your child is receiving from their medical team.

Ongoing interventions

In addition to the above…

  • Re-establish routines and a sense of normalcy. Traumatic experiences can shake one’s sense of safety and predictability in this world. As soon as possible, establishing or re-establishing daily routines and structure can help with recovery from a distressing experience. Resuming normal limit-setting and expectations as medically safe and appropriate can help foster a sense of normalcy and promote confidence and independence in your child’s recovery and ongoing coping. For parents and caregivers, scheduling time in your daily life for opportunities for self-care and rest can be very supportive; even five minutes of breaks sprinkled throughout the day can go a long way.
  • Take opportunities to share emotional experiences. People differ in terms of how much and when they are ready to talk about the impact of distressing experiences. As mentioned above, it can be normal to either spend lots of time thinking about a trauma or to avoid it altogether as much as possible. Identify individuals with whom you and your child can share your experiences, and create time and space to do so, if desired.
  • Explore beliefs about a traumatic event. This may be done in a therapeutic setting with a mental health professional. How one interprets and makes sense of the distressing experiences they have had can shape their coping and adjustment. For example, excessive focus on the most frightening parts of a medical experience can lead to ongoing fears about the hospital or doctors in general, whereas also remembering the helpful care one has received and the brave ways your child has coped with the difficulties can promote resilience and confidence in one’s ability to manage any future challenges.
  • Access therapeutic and other supports. Working with a mental health professional to help manage experiences of traumatic stress can be beneficial, particularly if you or your child are feeling distressed and finding it difficult to cope with what you have experienced. For many heart families, there can be multiple medical experiences over time that are highly distressing, and establishing a relationship with a mental health clinician who can be a source of support on an ongoing basis can be very helpful. If you or your child is experiencing a mental health disorder such as PTSD, working with a qualified mental health professional is certainly encouraged.

Where can I find additional help?

It can be tough to know where to go or who to ask for help in coping with traumatic stress symptoms. For children and youth, you can speak with your child’s family doctor, their pediatrician, and your cardiology team about concerns you may have about your child’s emotional and behavioural functioning. If your child’s cardiac condition has led to impacts on brain function, speak with your health care team about whether a neuropsychological evaluation may be helpful. Your child’s school counsellor can be a very helpful part of their support team, particularly as it relates to assisting with a smooth transition back to school after a hospitalization, identifying academic supports that may be needed, and promoting a positive school experience. For adults, you are also encouraged to speak with your family doctor about your coping, and consider looking into any workplace employee assistance programs or other mental health benefits that may be available to you. The next section provides more information on finding a therapist who can work with you and your child—both public and private options are available.

Finding a mental health professional in British Columbia

Mental health crisis supports

Other helpful resources

It is not possible to fully depict the depth and breadth of the challenges that heart families face. It is also not possible to fully describe the inspiring courage and strength displayed by children, youth, and families navigating complex medical concerns and managing experiences of traumatic stress. I hope our heart families are reminded that they are not alone in dealing with these difficult experiences. Support is available to help families take each step forward day by day, one moment at a time. ♥

“Understanding and Managing Medical Traumatic Stress in Children, Youth, and Families” is from our winter 2022 newsletter, Heart Matters. See our Newsletters page for more stories and to subscribe.

[1] National Child Traumatic Stress Network. (2003, September). Definition of medical traumatic stress. Paper presented at the Medical Traumatic Stress Working Group meeting, Philadelphia, PA.

[2] Meentken et al. (2017). Medically related post-traumatic stress in children and adolescents with congenital heart defects. Frontiers in Pediatrics, 5(20).

[3] Wolff-King et al. (2017). Mental health among parents of children with critical congenital heart defects: A systematic review. Journal of the American Heart Association, 6(2).

[4] Kazak et al. (2006). An integrative model of pediatric medical traumatic stress. Journal of Pediatric Psychology, 31(4).