Midwives, OB-GYNs, Nurses, Neonatologists, Child Neurologists and other specialists play a critical role in shaping the emotional experience of birth — especially when outcomes are unexpected or traumatic, such as in cases of Hypoxic Ischemic Encephalopathy (HIE).
While providers can’t always prevent HIE, they can reduce the psychological harm by offering trauma-informed, compassionate, and communicative care.
While communication has improved significantly with families in the #NICU with HIE, obstetric providers continue to lag in providing trauma-informed communication and care.
What is Birth Trauma?
Birth trauma refers to the physical or psychological distress experienced by a parent during or after childbirth.
It can negatively affect the parent-infant relationship and relationships with partners and extended family members.
Birth trauma can have lasting impacts on mental and physical health, potentially leading to conditions like anxiety, depression, and PTSD.
Why is HIE Traumatic?
It's a Sudden, Unexpected Crisis
HIE typically occurs without warning. A baby who was expected to be healthy suddenly stops moving, is born unresponsive, or requires resuscitation. Families go from calm to crisis in a matter of seconds — often with no time to process what’s happening.
It's a Medical Emergency with High Stakes
HIE is a form of brain injury. Parents hear words like “brain damage,” “seizures,” or “life-threatening.” Their child may be rushed away for cooling therapy, intubation, or transport to a higher level of care. These are traumatic events that trigger intense fear, helplessness, and panic.
Emotional Shock and Silence
There is often no opportunity for bonding after birth. The delivery room is quiet. The baby may not cry. Parents may not hold or even see their baby. Instead, they’re left with silence, vague updates, or medical jargon. The mom may also need intense medical care. This can cause deep grief, panic, anxiety and disorientation.
Helplessness & Powerlessness
HIE births leave families feeling like spectators to a life-or-death event involving their child. They are separated from their baby, reliant on machines and strangers, and often excluded from decision-making. This powerlessness is a defining feature of psychological trauma.
Lack of Information and Support
Many families report being told very little at the time of diagnosis. They may not understand what HIE is, what it means, how it happened, or never have it mentioned by their obstetric provider, or NICU team. This lack of communication and support compounds the trauma, leaving families with unanswered questions and prolonged anxiety, often leading to distrust.
Ongoing Uncertainty
Even after NICU discharge, trauma persists. HIE has a wide spectrum of outcomes, and families often wait months or years for clarity referred to as the “wait and see”. This uncertainty about development, milestones, and the future keeps many families in a prolonged state of hypervigilance and emotional distress. Not knowing a clear cause can also add to stress not knowing if it could happen in future pregnancies. Even if a child is developing on track, that does not negate the trauma experienced from HIE.
Complicated Grief & Isolation
Families may grieve the loss of the birth they imagined, the life they hoped for, or the baby they expected. Others lose their child altogether. Yet because HIE is less widely understood and represented, families often feel isolated and invalidated in their pain. NICU representation for HIE families continues to lag and parents continuously report feeling othered in the NICU support landscape.
Reducing the Impact of Birth Trauma in HIE
What can providers do to reduce the impact of birth trauma in HIE?
There are several ways to prevent and decrease the impact of birth trauma for families facing HIE, and it's a team effort.
From prenatal and birthing care, to postpartum care and communication, coordiation between maternal and infant care providers is essential.
Clear & Coordinated Communication
HIE parents consistently report how communication, or lack thereof, impacts their trauma and impacts trust. All providers should be providing accurate, up-to-date, compassionate information to the parents, including birth providers (OBgyns, midwives, etc) and neonatal staff (Neonatologists, Pediatric Neurologists, nurses, social work, etc.). A specific diagnosis of HIE whether it’s probable, suspected or confirmed, should be communicated as soon as possible.
Connection to Peer and Professional Support
HIE parents need specialized support to heal from their trauma. Trauma doesn’t just impact the birthing mother, but also impacts dads and non-birthing partners, and extended family.
It is the onus of the provider to be aware of what resources and support exists for specific diagnoses that their patients and families experience.
Effective interventions: Therapy provided by a credentialed therapist who may specialize in trauma, PTSD, or maternal health. Some modalities include CBT and EMDR. Peer support is also an effective intervention for families to connect with others who have experienced similar trauma to them.
Parents as Partners in Care, Not Bystanders
Family-centered care principles should be standard of care for all NICU populations, including HIE. Yet, gaps still persist. Parents should be actively seen as partners in care, not visitors or bystanders. Involvement of care during cooling, feasibility of holding during cooling, and encouragement to be an active participant in care through shared decision-making can decrease the impact of trauma.
Empowerment through Health Literacy
HIE parents are learning and navigating a completely new language and system of care. Families should be given accessible educational information about their child’s specific diagnoses, risk factors for long-term impacts, and education on post-discharge concerns such as seizure first aid training, how to escalate concerns of potential seizures or movements, and risk for Infantile Spasms. Information should be provided in the family’s first language and in writing to build health literacy. Bias of gatekeeping information to “protect” families creates additional trauma and distrust.
Address Systemic Disparities & Marginalization in Care
Provide culturally competent care recognizing the impact of historically marginalized populations, cultural differences and gender on individual experiences. Providers should acknowledge the bias and stereotypes that exist in the NICU landscape, and be open to learning from experiences, respecting individual family values that may differ from their own.
Care for the Family after NICU Discharge
Longitudinal support for HIE families is crucial in the aftermath of the birth and NICU trauma. Families should be reminded and encouraged to build support networks with community and diagnosis-specific resources to help in their journey of healing.
Debrief with Parents Post-Discharge
HIE parents are often left with few answers on how HIE happened to their baby. Families should feel empowered to call for a planned debrief after NICU discharge to address causation. This information is crucial for families as they look to plan potential future pregnancies. Obstetrical providers should work to build relationships with HIE families, and not avoid discussing it. Not debriefing a family erodes trust and creates additional, unnecessary barriers.
Resources for Birth Trauma Recovery & Support
While birth trauma is a difficult experience that can lead to additional diagnoses like anxiety, depression and PTSD, you aren't alone in this.
There are endless resources that are accessible for families provided through many different organizations.
Resources for Families
Hope for HIE has comprehensive support programs and services for the whole family including specific groups on social media with trained peer support mentors and services provided by credentialed professional staff members.
