Medical Trauma and Congenital Heart Defects (CHDs)

"Medical traumatic stress" is a kind of physical and psychological response to a scary medical event. A person can experience traumatic stress after an event such as:

• an injury

• an illness

• a symptom

• a medical treatment

• a hospitalization

• a diagnosis

Sometimes, people experience traumatic stress because of their own medical events. Other times, people experience traumatic stress when they witness the medical events of someone else.

Some people develop medical trauma after a single frightening medical event. Other people develop medical trauma after a series of events, or in response to an ongoing medical situation.

When a person experiences traumatic stress, their sense of safety or selfhood may feel threatened.

It is normal and natural to have strong emotional reactions to scary events. Every person responds to events in their own way, and feelings are neither good nor bad. In most cases, a person initially feels very upset after a very scary event, and then gradually starts to feel better over days and weeks.

When a person has a stress response after a medical event, they might:

• feel very nervous

• constantly be on the lookout for danger

• be easily startled

• have trouble sleeping

• feel afraid when anything reminds them of the medical event

• have trouble focusing

• expect things to go wrong

• have trouble remembering details of the scary event

• vividly remember the scary event, even when they do not want to think about it

• have nightmares

• feel sad, angry, scared, or annoyed more than usual

When a person has an acute stress disorder, they experience symptoms within a month of the traumatic event. Their symptoms can interfere with their ability to fully participate in their daily life, and can include:

• feeling consistently fearful and anxious

• being moody, irritable, or sad

• constantly being on the lookout for danger

• difficulty with sleeping and eating

• feeling like things are not real, or like the traumatic event was not real

• avoiding anything that reminds them of the traumatic event

• socially withdrawing

• having unwanted memories or nightmares of the event

Acute stress disorder and post-traumatic stress disorder are very similar. The main difference is that acute stress disorder occurs shortly after the event, and resolves relatively quickly, whereas post-traumatic stress disorder (PTSD) persists for months or years after the event.

When a person has post-traumatic stress disorder after a medical event, their symptoms last for months or years. They usually experience many of these symptoms:

• Re-experiencing symptoms:

  • having intrusive thoughts: vivid, unwanted memories of the event, when they may feel like they are reliving the event

  • nightmares

  • scary or distressing thoughts

  • physical signs of stress, such as rapid heart rate, digestion problems, sweating, headaches, elevated blood pressure

• Avoidance symptoms:

  • staying away from situations or experiences that remind them of the scary event

  • avoiding thoughts or conversations that remind them of the scary event

• Arousal and reactivity symptoms:

  • startling easily

  • feeling constantly on guard or on edge

  • constantly expecting disaster

  • difficulty focusing and concentrating

  • sleep problems

  • irritability and anger

  • engaging in unusual reckless behaviors

• Mood and cognitive symptoms:

  • having more negative thoughts and feelings than usual, such as feelings of guilt, anger, sadness, shame, fear or hopelessness

  • having trouble remembering details of the scary event

  • feeling negatively about the world or oneself

  • feeling differently about themselves than they did before the event

  • losing interest in hobbies, work, and activities

  • feeling socially isolated

  • feeling unsafe or like a loved one is unsafe

  • having trouble feeling happiness or enjoyment

When someone has PTSD, they

• still have symptoms more than a month after the scary event

• have trouble fully participating in daily activities because of the stress response

If we are anticipating a scary event, our bodies prepare to identify and respond to danger. During a scary event, our bodies are ready to act quickly and decisively. Both before and during a scary event, we activate the sympathetic nervous system. This means:

• the heart beats faster

• the mind becomes alert and focused on the problem

• pupils dilate

• airways get wider

• more blood goes to muscles

• breathing speeds up

• digestion slows down

• glucose is released

This stress response helps us to respond rapidly and effectively in an emergency, focusing all of our body's resources on resisting or escaping danger. We can run faster, fight stronger, and think on our feet. Immediate trauma behaviors often fall into 4 categories:

1. Fight: arguing, physically fighting, being aggressive

2. Flight: avoiding, escaping, running away, refusing

3. Freeze: staying still and quiet, zoning out, dissociating

4. Fawn: trying to please aggressors or people in power

These stress responses can be very helpful in many types of scary and dangerous events. At other times, though, they can be less helpful, especially if a sense of danger lasts over time.

In many situations, a traumatic stress response can be helpful. It can help us to stay safe and to be aware of our environment. When we understand how the stress response is supposed to work, we can better appreciate what happens when it goes wrong.

Imagine, for example, that a child walks out onto a frozen pond and falls through thin ice. Immediately, their sympathetic nervous system would kick in, which would help them to:

• think clearly, remember what they've learned, make and execute a plan

• maximize their strength and stamina while they lie flat, kick towards stronger ice, and pull themself up

• stay focused, strong, and unaware of discomfort as they walk back towards safety and call for help

After this scary event, the child's stress system could help them to:

• be cautious of icy ponds

• avoid walking out onto ice unless they are certain it is thick enough, and they are with a trusted adult

• follow safety procedures and other rules around ice and water

While our stress response evolved to keep us safe, sometimes a response is not appropriate to the situation, and it can cause problems.

For example, stress responses can become a problem if:

• We feel unsafe often or always, so our stress response is activated way too much

• We do not have any control over the scary situation, so our stress response cannot make us safer

• We feel unsafe even when we are actually safe, so our stress response is activated unnecessarily

• We become scared of things that we associate with the scary event, but that are not actually dangerous

For example, imagine again the child who fell through thin ice into a pond. As we know, a helpful stress response might prevent that child from walking out onto thin ice in the future, and keep them safer. But what would happen if that child developed a traumatic stress disorder? If they had a traumatic stress disorder, they might:

• Avoid going outside any time it is cold

• Refuse to go back to the pond, even to go swimming in the summer

• Be unwilling to ice skate on an indoor rink

• Feel anxious every time they see their snow boots

• Have a panic reaction if they hear a cracking sound

These responses make sense, since the child has developed fear and avoidance of anything that reminds them of danger. However, these responses do not keep the child safer, and probably have a significant negative effect on the child's life.

Experiencing a medical emergency is clearly different from falling through thin ice. However, the stress processes are the same, both in the ways they can be helpful, and the ways they can be unhelpful.

When a parent or child has a stress response before or during a medical event, they can:

• focus, think quickly and precisely, and make decisions

• use their body's maximal strength and stamina

• be less aware of pain or discomfort

These reactions can help a patient or caregiver make good decisions, act quickly, and complete physical tasks without getting tired. These abilities can help them to get through a crisis as well as possible.

After a medical event, the stress response can help patients or caregivers:

• avoid situations that could trigger a medical emergency

• be very alert in situations that could lead to a medical emergency

• be conscientious about healthcare to avoid future medical problems

But while the stress response can be helpful to people with heart defects and their caregivers, it can also go awry for them, just as it could for the child who fell through the ice. When it becomes unhelpful, a person might:

• feel afraid when they smell hand sanitizer, or when they hear a beeping that sounds similar to a medical alarm

• be unwilling to drive past the hospital, or even the exit to the hospital

• avoid medical appointments

• have a panic reaction if they hear someone crying

Especially if they persist over time, these sorts of unhelpful stress responses do not keep people safe, and can interfere with their daily lives.

Children with heart defects often experience scary medical events. Children react differently to these experiences depending on their unique personalities and circumstances, and depending on the timing and nature of the medical events.

Sometimes, major medical events happen only when a child is very young, before they can form stable memories. Other times, scary events happen when a child is older, and can understand and remember them clearly. For kids with more complex illnesses, medical events may be ongoing, with frequent medical emergencies, treatments, hospitalizations, doctor's visits, and procedures.

For some kids, scary medical events happen when a child is older, and can fully understand and remember what happens. For example, an older child might require a valve replacement surgery, undergo a transplant, or be hospitalized with pneumonia. A healthy sibling might witness their baby brother or sister being rushed to the hospital, or might be separated from parents who must stay in a hospital room.

Shortly after a scary medical event, kids often show symptoms of an acute stress disorder. Like adults, they might:

• be more fearful, moody, sad, angry, or irritable than usual

• avoid anything that reminds them of the event

• have unwanted memories or nightmares

• seem edgy and anxious

• have trouble eating and sleeping

Depending on their age, kids may also show other signs of acute stress, such as:

• clinging to parents

• acting more like a younger child

• temporarily losing skills they had previously mastered

• having toileting accidents

• challenging behaviors, such as aggression and refusal to follow requests and routines

Most kids with medical trauma gradually start to feel better once a medical situation is resolved. They feel less scared, they think less about the scary events, and they start to focus on and enjoy other things. Their behavior gradually returns to normal.

When kids are exposed to a scary medical event, they often initially have a big reaction, but then their feelings and behaviors gradually return to normal. In some cases, kids continue to struggle with traumatic stress more than a month after the event. In these cases, they may have a post-traumatic stress disorder (PTSD).

The symptoms of PTSD are very similar to the symptoms of an acute stress disorder in kids, except that PTSD lasts for longer. Like adults with PTSD, kids with PTSD usually:

• re-experience the event with scary thoughts and/or nightmares

• avoid anything that reminds them of the event

• are anxious, edgy, and easily startled

• have trouble sleeping and relaxing

• feel angry, sad, guilty, ashamed, and/or afraid more than usual

• have trouble feeling happy and interested

• feel unsafe

Depending on their age and development, kids with PTSD may show their distress through:

• clinging to adults

• acting like a younger child

• regressing in certain skills, such as sleeping, toileting, and eating

• behaving in challenging ways, such as arguing, being aggressive, and refusing to comply with requests

• doing poorly at school

• withdrawing from friends and activities

Some kids face frequent medical emergencies, treatments, hospitalizations, doctor's visits, and procedures. In these cases, children need to cope with memories of scary experiences, ongoing scary experiences, and with the anticipation of more scary experiences in their future.

Children with chronic medical trauma can respond in a variety of ways, which are often complex and may even seem contradictory. Children's responses generally change over time, as the children and their illnesses develop.

In cases of chronic illness, it is normal to sometimes feel angry, sad, and afraid. However, children with chronic illnesses should also be able to feel calm, joy, satisfaction, pride, and hope.

When a child has complex post-traumatic stress disorder (CPTSD) from a chronic medical illness, they often experience the usual symptoms of PTSD. In addition, they may face:

• difficulty establishing their identity and sense of self

• difficulty believing in their own agency, autonomy, and ability to act in ways that affect their lives

• trouble relating to others and forging strong relationships

• poor self-regulation

• a sense of hopeless or helplessness

Adults with congenital heart defects often experience symptoms of traumatic stress. Sometimes, they have lived with these symptoms for a long time, and may even think of them as "normal" or "just their personality." Other times, their symptoms may change over time, or may appear in response to a new medical event.

In young adults, traumatic stress can look like:

• being moody and irritable

• isolating from other people

• preferring to stay home

• being afraid and anxious

• trouble sleeping and eating

• taking risks

• avoiding medical appointments

• not taking prescribed medicines

• refusing to talk about health or healthcare

• denying the seriousness of their medical condition

Sometimes, traumatic stress can drive young people to avoid anything related to their medical condition. This behavior can be very dangerous if young people skip doctor's appointments, do not take their medicine, do not adhere to medical advice, and/or refuse necessary medical treatment. By treating medical anxiety and traumatic stress, families and providers can help young people feel safe while receiving required medical treatment.

When young adults and their families know the symptoms of traumatic stress, they can monitor for them and manage them. Living with a heart defect does not have to mean living with chronic stress.

When a child has a congenital heart defect, the people who love them often experience traumatic stress and stress disorders. Traumatic stress can affect:

• parents

• siblings

• other family members, friends, and loved ones

• healthcare providers

As with patients, a loved one's stress disorder can be:

• acute stress disorder: within a month of an event

• post-traumatic stress disorder (PTSD): occurring more than a month after the event

• complex post-traumatic stress disorder (CPTSD): occurring on an ongoing, chronic basis

When people experience traumatic stress on behalf of a sick child, they can experience any of the typical symptoms listed above (re-experiencing, avoidance, arousal/reactivity, mood/cognitive). They also may be especially focused on the health and wellbeing of the child, and on their role as caretaker. This can mean:

• difficulty ever separating from the child

• constantly imagining a disaster befalling the child

• checking the child's breathing, heart rate, etc. more often than the medical team says is necessary

• waking a sleeping child to make sure they are OK

• avoiding anything that could seem risky to the child, including ordinary daily activities, and actions that the medical team recommends

• avoiding sleep so as to continue monitoring the child

• questioning their own identity as a parent or caretaker

• feeling unable to care for or protect the child

• feeling unable to make decisions n behalf of the child

• avoiding thinking or talking about the child's health and development, and insisting that the child is fine

Traumatic stress disorders are treatable, and can get much better. With treatment, people can learn to face their memories with a sense of calm and control, to rediscover a sense of safety, and to revisit places and experiences that they previously avoided. Even in cases of chronic illness, people can learn to find acceptance and contentment alongside uncertainty.

Your medical team can help you determine the best treatment for you and your family. Effective treatments can include:

• therapy appropriate to a person's age, experience, and needs, such as:

  • acceptance and commitment therapy (ACT)

  • cognitive-behavioral therapy (CBT)

  • exposure therapy

  • eye movement desensitization and reprocessing (EMDR)

  • family therapy

  • group therapy

  • play therapy

  • trauma-focused cognitive-behavioral therapy (TF-CBT)

• medication for anxiety and/or depression

The videos below provide more information about pediatric medical trauma and its treatment.

Medical trauma can not always be prevented, but strategies and preparation can often make it less common and less intense.

Families can often reduce medical trauma by:

• Consulting with hospital social workers, psychologists, spiritual care providers, palliative care providers, and/or Child Life specialists, and asking these staff members for help before, during, and after hospital visits.

• Collaborating with medical staff, and sharing decision making.

• Getting therapy before, during, and after hospital visits to understand and manage thoughts and feelings.

• Sharing a child's unique preferences and needs with hospital staff, and advocating for care that will help the child feel safe.

• Explaining the child's diagnosis and treatment to the child in a calm, supportive, and developmentally-appropriate way.

• Staying present, responsive, and consistent with the child.

• Participating in medical play.

• Managing your own big feelings and fears away from the child's bedside, and generally appearing calm and in control when with the child.

• Being aware of what the child hears, and what the child wants to know. Protecting the child from unwanted or scary adult conversations, but also keeping them as informed and involved as they want to be.

Providers can often reduce medical trauma by:

• Constantly explaining what you will do, and what you are doing, in a way the child and family can understand.

• Explaining diagnosis, treatment options, and prognosis as clearly and truthfully as possible, and giving space and time for family to ask questions, make decisions, and understand.

• Whenever possible, asking permission before touching.

• Giving choices to the child and family whenever possible.

• Collaborating with the family, and sharing decision making.

• Listening to the family, giving them agency and choice, and responding to their needs and concerns.

• Aligning care practices with the family's goals.

• Monitoring and managing symptoms of delirium, and keeping sick people as fully oriented as possible

• Using hospital social workers, psychologists, spiritual care providers, palliative care providers, and/or Child Life specialists to support the family.

• Employing Developmental Care practices in the hospital.

• Helping families to spend time together, participate as much as possible in the child's care, and preserve family routines and traditions.

• Adjusting care and communication to individual and cultural needs and preferences.

• Managing pain and discomfort.

• Providing opportunities for fun, creativity, self-and social connection.

When a child has a complex heart defect, they and their caregivers may not be able to avoid scary medical events. However, they can avoid much of the suffering associated with traumatic stress. Through careful planning, monitoring, and intervention, families and providers can work together to establish emotional safety and personal agency. Then, even in the face of scary events, patients, families, and providers can find resilience and hope.

This content was reviewed by a psychologist at Boston Children's Hospital.

Developmental care is best when it is local. Families local to Boston can schedule evaluations with the Cardiac Neurodevelopmental Program (CNP). Families from other regions can use the link below to find their care team.