This is not just parental stress. This is trauma. And there’s a difference.

Let’s talk about it.

Top 5 Takeaways on Understanding and Healing from Medical Trauma

What Is Medical Trauma?

Pediatric medical traumatic stress is the reaction of families, both parents and children, following serious medical events like hospitalizations, surgeries, or prolonged treatment. Unlike single traumatic events, it often involves ongoing trauma from repeated exposure.

Medical trauma is not just the event—it’s what happens inside your body as a result of the event. It is the emotional, psychological, and physical response to serious illness, procedures, or even just the fear of them. It can affect anyone in the family—not just the patient.

Each person’s nervous system responds differently. What’s traumatic to one person may not be to another. Trauma isn’t always labeled as trauma. Burnout, guilt, shutdown—they’re all part of it.

Medical trauma often includes:

• Witnessing your child endure painful procedures or emergencies
• Feeling helpless or unable to change a frightening situation
• Constant exposure to medical environments, leading to chronic stress
• Going into survival mode and ignoring your own emotional state
• Minimizing your own experience because “it wasn’t me on the table”

Recognizing Trauma in Parents & Children

Medical trauma affects both children and adults. Kids may show trauma through big emotions, anxiety, or shutting down altogether. Caregivers often feel the pressure to “just keep going,” even when they’re running on empty.

Parents may experience:

• Hypervigilance (always feeling on edge)
• Trouble sleeping or relaxing
• Nightmares, flashbacks, or avoidance of reminders
• Physical symptoms like headaches, chest tightness, and fatigue
• Emotional numbness, guilt, or self-blame

“I remember walking into the NICU for the first time, and a nurse turned to me and said, ‘Congratulations on your baby.’ I thought, ‘Why is she congratulating me? I messed up. My baby is broken.’”

Children may experience:

• Nightmares or anxiety about procedures
• Emotional outbursts, mood swings, or withdrawal
• Difficulty expressing emotions or trusting others
• Sleep or appetite changes
• Physical complaints (headaches, stomachaches)
• School refusal, isolation, or trust issues

These are not just behaviors—they are coping responses to overwhelming experiences.

What the Research Says

• Up to 80% of parents and children experience some form of traumatic stress following medical events
• 30% of parents and 25% of children are experiencing persistent symptoms.
• Caregivers of children with drug-resistant epilepsy report high rates of PTSD, depression, and emotional exhaustion (Carmassi et al., 2020; Smith et al., 2023).
• Stress does not automatically decrease after surgery. One study found that caregiver stress levels remained high for years after epilepsy surgery (Braams et al., 2015).
• Emotional distress is common when post-surgical cognitive or behavioral improvements fail to meet expectations (Leal et al., 2020).
• The long road to surgery (often 5+ years) can lead to emotional exhaustion and isolation (Baca et al., 2015; Pieters et al., 2016).

A Canadian study (Smith et al., 2023) of 259 parents found:

• 36% had moderate-to-severe depression.
• 32% had moderate-to-severe anxiety.
• 34% remained in a trajectory of persistent distress over two years.

Key factors that influenced caregiver well-being:

• The child’s overall health and quality of life (better child health = lower parental stress)
• Gender: fathers had better mental health outcomes than mothers
• Household income and social support mattered deeply

Does Trauma Affect Mothers and Fathers Differently?

Yes. Mothers consistently report higher trauma scores.

• One study found that mothers reported significantly more cognitive and physical stress symptoms than fathers (Carmassi et al., 2020).
• The emotional burden often falls more heavily on mothers, who often take on more caregiving responsibilities.
• This isn’t about blame. It’s about recognizing fundamental differences in how trauma is experienced—and why we need gender-sensitive support systems.

“My ex-husband and I seemed to be worlds apart in how we experienced trauma.”

Children and Siblings Experience Trauma Too

Most kids who have epilepsy surgery improve in quality of life (Jakobsen et al. 2022), especially with fewer seizures or reduced medication. But the mental health side of things is more complicated. Some children who undergo epilepsy surgery—or live with severe epilepsy—experience PTSD-like symptoms, including fear of hospitals, medical anxiety, or mood changes (Turgoose et al. 2021).

• They may fear hospitals, doctors, or medical talk.
• Some withdraw emotionally, others lash out.
• Trauma responses are normal, but they need to be recognized and addressed

Siblings often experience trauma from the impacts of watching their brother or sister go through medical care. They may experience:

• Anxiety, depression, guilt, grief
• Feeling invisible or left out
• Jealousy or fear

They also need direct emotional support and a chance to process their own experiences (Schumann et al., 2024). Recognizing signs early can help kids get the support they need. But we need the right tools.

• Watch: What About My Other Kids? — YouTube
• Read our Almost Everything List – Sibling & Trauma Resources

How Trauma Affects Relationships

Medical trauma doesn’t just affect mental health—it impacts relationships, too. Couples often cope in different ways, which can lead to misunderstandings, resentment around caregiving roles, and emotional distance. Communication is key, but it can be hard to maintain when everyone is exhausted. Therapy can help before things reach a breaking point.

“We had to learn that while we were on the same team, we were playing very different positions.”

Outside of your immediate family, some relationships may fade while others deepen. Letting go of those who can’t show up—and leaning into those who can—is a powerful form of self-care.

When Seizures Don’t Go Away

Living with drug-resistant epilepsy means living with constant uncertainty. Seizures that don’t respond to treatment—especially when they’re frequent, dangerous, or life-threatening—can feel like a never-ending crisis.

This isn’t just worry—it’s trauma. The constant need to stay alert, to be ready for the next seizure, puts families in a permanent state of stress. Over time, this can lead to anxiety, depression, PTSD symptoms, and severe sleep issues (Yu et al., 2022; Carter et al., 2022).

The trauma doesn’t resolve because the threat never goes away. Instead, it becomes chronic—woven into daily life.

“Every morning when I walk down to her bedroom, my brain still jumps to, ‘Is she alive?’”

Why Am I Just Feeling This Now?

For many caregivers, the emotional impact of medical trauma doesn’t hit right away—it surfaces later, when the chaos slows down. After months or years of living in crisis mode, your brain finally has space to feel what it once pushed aside to survive.

You did what you had to do—made decisions, showed up, held it together. But when the hospital visits ease and the therapy schedule lightens, it’s common to feel unexpectedly overwhelmed, exhausted, or numb.

You might think, “I should feel grateful—so why do I feel this awful?”

Here’s why:

• Your nervous system is catching up after running on adrenaline.
• Delayed processing is normal—it often shows up only after the crisis ends.
• Burnout can blunt your ability to feel joy.
• Grief may linger for what was lost—time, memories, or the life you imagined.
• Comparing your struggle to others doesn’t ease the pain—it adds guilt.
• You’re not weak for struggling. You’re human.

Too many parents say no one ever talked to them about trauma. They were given care plans—but not care. Caregiver trauma is real. And healing isn’t extra. It’s necessary. And it’s never too late to begin.

What Helps? Recognizing Trauma and Tools for Healing

Recognizing Trauma

Awareness is the first step toward healing. Families aren’t just “stressed out”—they are experiencing the lasting effects of repeated high-stress medical situations. We have to name it before we can change it.

Supporting Children

The most important thing parents can do is create a safe, supportive environment for their child.

• Validate their feelings: “It’s okay to feel scared.”
• Keep consistent routines: predictability supports healing.
• Explain procedures in age-appropriate ways.
• Give simple choices: even picking which arm gets the blood draw helps.
• Use comfort items or play therapy tools.
• Make sure your child’s clinician is trained in trauma-informed care. Download the Pediatric Medical Traumatic Stress guide here.

Supporting Nonverbal or Intellectually Disabled Children

• Start by recognizing and validating their trauma. Children don’t need to speak to show us how they’re feeling.
• Somatic therapies, touch-based strategies, and body-focused approaches may help children who can’t express trauma verbally.
• When caregivers address their own trauma and regulate their nervous systems, they are better able to support and advocate for their children.

“My son doesn’t use words to speak, but it’s clear he’s been through trauma. I work to acknowledge and support that, even without verbal confirmation.”

Professional Mental Health Support

Finding the right therapist can make a big difference in how families process trauma. Many parents hope to find someone who fully understands epilepsy, brain surgery, and the emotional toll that comes with it. But for rare and complex conditions, that level of expertise may not be realistic.

Instead, look for a therapist who understands medical trauma, is trauma-informed, and is open to learning. The first few sessions can be a chance to share your child’s medical history and your family’s experience.

The therapist doesn’t need to be an epilepsy expert. What matters most is that they help you manage your own reactions, stress responses, and healing. Rather than getting stuck in the details of the trauma, the goal is to build skills to manage how your body and mind respond to ongoing challenges.

Questions to Ask a Potential Therapist:

• Are you trained in trauma-informed care?
• Have you worked with families of children with disabilities or complex medical needs?
• Are you open to learning about our experience?

Evidence-based therapies include:

• Cognitive Processing Therapy (CPT) – Change negative trauma-related thought patterns
• Prolonged Exposure Therapy (PE) – Gradual exposure to trauma-related cues
• Eye Movement Desensitization and Reprocessing (EMDR) – Process traumatic memories with guided eye movements
• Cognitive Behavioral Therapy (CBT) helps reframe unhelpful thoughts and manage anxiety.
• Trauma-Focused Cognitive Behavioral Therapy (TF-CBT) – Connect thoughts, feelings, and trauma in children and adolescents
• Accelerated Resolution Therapy (ART) – Rapid symptom relief using eye movements and imagery
• Somatic Experiencing – Release stress stored in the body
• Combining body-based and cognitive approaches can allow for full-system healing

How to find a provider:

• Psychology Today Therapist Finder
• Accelerated Resolution Therapy
• CBT Therapist | Association for Behavioral and Cognitive Therapies
• TF-CBT Directory
• EMDRIA.org
• Somatic Experiencing Practitioner
• Ask your primary care doctor, who knows you (or your child) well, for a referral.

The Power of Peer Support

Sometimes, the most healing thing is simply talking to someone who gets it. One honest conversation with another parent can bring relief, comfort, and the reminder that you’re not alone.

“Just sitting at breakfast with another mom and crying together—that’s healing.”

Sharing your story and hearing someone else’s can be life-changing. It doesn’t have to be formal—a Facebook group, a phone call, or even a night out with a fellow parent can be deeply therapeutic.

Support networks that can help:

• Pediatric Epilepsy Surgery Alliance (PESA) – Parent-to-parent support from those who’ve been there
• Facebook groups (like Pediatric Epilepsy Surgery Support, Parents of Children with Epilepsy Support Group, KISS Pediatric Stroke Support, etc.)
• Hospital in-person support groups: Often led by social workers or child life teams
  
• Alongside Network – Free trauma-informed wellbeing groups for caregivers

Connection matters. Support doesn’t have to be perfect—it just has to be real.

“Talking to someone who gets it changed everything. I didn’t feel so alone.”

What Healing Looks Like: Small Steps That Matter

When your child has been through medical trauma—or when you’ve been running on adrenaline for years—healing can feel out of reach. But it doesn’t have to happen all at once. It happens in small moments: one breath, one decision, one connection at a time.

Simple Ways to Begin:

• Acknowledge that this is hard.
• Take three deep belly breaths (diaphragmatic breathing).
• Try humming or gentle tapping to calm your nervous system.
• Stretch at the kitchen sink.
• Go for a short walk or play a favorite song.
• Name three things you’re grateful for—even if one is “this day is over.”
• Text another parent. Make a coffee date. Sit with someone who gets it.

You don’t need the perfect therapist to get started. Healing happens in community, in daily practices, in those three deep breaths you take before walking into your child’s room, and in moments of connection.

There’s a difference between healed and healing. We may never be ‘healed,’ but we are always healing.

Reclaiming Your Identity

When you’re deep in the world of hospitals and care plans, it’s easy to lose sight of yourself. Many parents say they feel invisible—seen only as “the caregiver.” It’s isolating—and it wears you down.

But caregiving doesn’t erase who you are. You’re still here. Still whole. Still worthy of joy, purpose, and growth. Healing isn’t just about coping with trauma—it’s about reconnecting with yourself.

“I had to grieve the life I thought I’d have so I could finally love the one I’m living.”

Self-Care Isn’t Selfish

Caring for yourself is not a luxury—it’s survival. You can’t pour from an empty cup, and your child learns just as much from watching you take care of yourself as from anything you say.

• Rest is repair.
• You’re allowed to ask for help.
• You are doing the best you can—and that’s more than enough.
• You are not weak for struggling. You’re human.
• We can’t help our children if we’re falling apart.

Why Trauma-Informed Care Matters

The best healthcare isn’t just about treating seizures—it’s about supporting your family’s emotional well-being, too.

Trauma-informed care means looking beyond the diagnosis to recognize how medical experiences affect the whole family. It’s about creating emotionally safe, respectful environments where both children and caregivers feel seen, supported, and empowered.

What Trauma-Informed Care Looks Like:

• Emotionally safe spaces for kids and caregivers
• Clear, compassionate communication
• Respect for cultural and personal identities
• Mental health support as part of the care plan
• Parents treated as experts in their child’s life

When providers understand trauma, outcomes improve—medically and emotionally. Adding mental health support and trauma screening helps reduce caregiver stress and supports families long-term (Yu et al., 2022). But too often, families are left to navigate emotional recovery alone.

What Families Deserve:

• Providers who understand the emotional toll of caregiving
• Access to mental health support and peer connection
• Permission to care for their own well-being
• Tools to heal—not just survive

Multidisciplinary teams—doctors, nurses, therapists, social workers, and palliative care—can provide holistic, family-centered support. But emotional care must be built in from the start, not treated as an afterthought.

Trauma-informed care sees the whole family—not just the seizures.

“I still hold my breath before I open his bedroom door. I hate that my brain does this.”

Key System Changes We Need:

• Routine mental health screening for caregivers during surgery evaluations and follow-ups (Lado et al., 2024)
• Embedded psychosocial services in neurology and epilepsy care (Yu et al., 2022).
• More training for providers in trauma-informed communication and validation (Epigraph ILAE 2019)
• Patient navigation services to help families manage complex systems (Bakhski et al., 2025)
• All hospitals and clinicians should be trained in trauma informed care. Start here.

What You Can Do:

• Ask your child’s team if they offer mental health screening—for you and your child
• Request referrals for therapy, counseling, or peer support
• Speak up if you feel dismissed or unseen—your voice matters
• Advocate for trauma-informed practices in every setting your child receives care

Emotional well-being isn’t extra—it’s essential to healing the whole family.

Final Thoughts: You Deserve to Heal

Too many parents suffer in silence, believing they should be handling things better. But medical trauma is real, and it deserves real care.

Trauma doesn’t just disappear. We grow around it. Healing doesn’t mean forgetting what you’ve been through. It means learning to carry it differently. Finding peace while remembering, strength while grieving, and connection while rebuilding.

Healing isn’t just possible. It’s already happening—one small step at a time.

You are not alone. You are not failing. You are doing something incredibly hard—and you deserve support, too.

Need more tools or support?
Download The (Almost) Everything List from the Pediatric Epilepsy Surgery Alliance.

In this important presentation from our 2024 family conference, Dr. Brynn Huyssen—a clinical psychologist and parent of a child with catastrophic epilepsy—shares practical strategies for managing pediatric medical traumatic stress before and after epilepsy surgery. Drawing from over 15 years of trauma care experience and her own family’s journey through multiple hospitalizations and surgeries, Dr. Huyssen offers compassionate, evidence-based guidance to help families recognize trauma, cope with emotional overwhelm, and build resilience throughout the surgical experience. 

Our Power Hour session on medical trauma is a must-see. Topics include:

• What is medical trauma, and how does it affect both children and caregivers?

• Recognizing trauma responses in both parents and children, including PTSD, anxiety, and emotional burnout.

• Practical tools for healing, including therapy options, self-care strategies, and trauma-informed approaches.

• The power of community and peer support in navigating life after a medical crisis.

• How parents can advocate for trauma-informed care in medical settings.

See the Research

Want to explore more? These studies and articles informed the insights shared in this post:

• Baca, C. B., Pieters, H. C., Iwaki, T. J., Mathern, G. W., & Vickrey, B. G. (2015). “A journey around the world”: Parent narratives of the journey to pediatric resective epilepsy surgery and beyond. Epilepsia, 56(6), 822–832. https://doi.org/10.1111/epi.12988
• Braams, O., Meekes, J., Braun, K. P. J., Schappin, R., van Rijen, P. C., Hendriks, M. P. H., Jennekens-Schinkel, A., & van Nieuwenhuizen, O. (2015). Parenting stress does not normalize after epilepsy surgery in children. Epilepsy & Behavior, 44, 48–54. https://doi.org/10.1016/j.yebeh.2014.10.034
• Carmassi, C., Corsi, M., Bertelloni, C. A., Pedrinelli, V., Massimetti, G., Peroni, D., Bonuccelli, A., Orsini, A., & Dell’Osso, L. (2020). Post-traumatic stress spectrum symptoms in parents of children affected by epilepsy: Gender differences. Seizure, 80, 169–174. https://doi.org/10.1016/j.seizure.2020.06.021
• Jakobsen, A. V., & Elklit, A. (2021). Post-traumatic stress disorder (PTSD) symptoms in children with severe epilepsy. Epilepsy & Behavior Reports, 122, 108217. https://doi.org/10.1016/j.yebeh.2021.108217
• Lado, F. A., Ahrens, S. M., Riker, E., Muh, C. R., Richardson, R. M., Gray, J., Small, B., Lewis, S. Z., Schofield, T. J., Clarke, D. F., Hopp, J. L., Lee, R. R., Salpekar, J. A., & Arnold, S. T. (2024). Guidelines for specialized epilepsy centers: Executive summary of the report of the National Association of Epilepsy Centers Guideline Panel. Neurology, 102(4). https://doi.org/10.1212/WNL.0000000000208087
• Leal, S. T. F., Santos, M. V., Thomé, U., Machado, H. R., Escorsi-Rosset, S., Dos Santos, A. C., Wichert-Ana, L., Leite, J. P., Fernandes, R. M. F., Sakamoto, A. C., & Hamad, A. P. A. (2020). Impact of epilepsy surgery on quality of life and burden of caregivers in children and adolescents. Epilepsy & Behavior, 106, 106961. DOI: 10.1016/j.yebeh.2020.106961
• Pieters, H. C., Iwaki, T., Vickrey, B. G., Mathern, G. W., & Baca, C. B. (2016). “It was five years of hell”: Parental experiences of navigating and processing the slow and arduous time to pediatric resective epilepsy surgery. Epilepsy & Behavior, 62, 276–284. https://doi.org/10.1016/j.yebeh.2016.07.019
• Schumann A, Vatne TM, Fjermestad KW. What challenges do siblings of children with chronic disorders express to their parents? A thematic analysis of 73 sibling-parent dialogues. J Pediatr Nurs. 2024 May-Jun;76:91-98. DOI: 10.1016/j.pedn.2024.01.032
• Smith, M. L., Puka, K., Speechley, K. N., Ferro, M. A., Connolly, M. B., Major, P., Gallagher, A., Almubarak, S., Hasal, S., Ramachandrannair, R., Andrade, A., Xu, Q., Leung, E., Snead, O. C. III, & Widjaja, E. (2023). Trajectories of parent well-being in children with drug-resistant epilepsy. Epilepsia, 64(12), 3342–3353. https://doi.org/10.1111/epi.17797
• Turgoose, D. P., Kerr, S., De Coppi, P., Blackburn, S., Wilkinson, S., Rooney, N., Martin, R., Gray, S., & Hudson, L. D. (2021). Prevalence of traumatic psychological stress reactions in children and parents following paediatric surgery: A systematic review and meta-analysis. BMJ Paediatrics Open, 5(1), e001147. https://doi.org/10.1136/bmjpo-2021-001147
• Yu, Z., Shao, Q., Hou, K., Wang, Y., & Sun, X. (2022). The experiences of caregivers of children with epilepsy: A meta-synthesis of qualitative research studies. Frontiers in Psychiatry, 13, 987892. https://doi.org/10.3389/fpsyt.2022.987892