Birth Trauma Awareness Week being held July 14-20 is a time to reflect on the experiences in our HIE community and beyond. We join with many global organizations in recognizing and educating about Birth Trauma.
Neonatal HIE is traumatic for many reasons. Families are thrust into an often life-threatening experience for not just their baby, but also the mother, while partners helplessly stand by. Babies often have to be separated from their parents, sometimes down the hall to the NICU, other times life-flighted hours away for the care they need.
There are many ways to support people who have experienced birth trauma. At Hope for HIE, your birth trauma is seen, heard and validated. You are not alone in your journey, no matter what the outcome was from HIE.
There are many ways providers can decrease the impact of trauma, or prevent it altogether. Hope for HIE is here for all HIE families, worldwide through comprehensive support programs and services -- including professional staff and trained peer support volunteers -- who work with families in our support groups, and in mentoring to lend a listening ear and a compassionate heart.
Let's start in the beginning defining birth trauma, and learning why HIE is traumatic.
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 parents do to reduce the impact of birth trauma in HIE?
There are several ways to help heal and decrease the impact of trauma. While some feelings may never truly go away, they can transform and healthy and joyful experiences can grow around the trauma.
Families can also actively engage with their child's medical team in and out of the NICU to improve care.
Advocate for Clear Communication
HIE parents can ask for information written down, accessible in their first language, ask for team meetings and a named diagnosis for their child’s brain injury. Parents can ask for a communication champion on their team, or engage other helpful resources like palliative care within the NICU setting to help with shared decision-making and translation of family values to care. Families shouldn't feel like their wants, needs and feelings being heard is too much for the medical team.
Connect 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.
Families can connect in with support resources provided by the hospital, diagnosis-specific resources and organizations, community resources for trauma and postpartum care, and therapy for themselves and partners.
Parents as Partners in Care, Not Bystanders
Get involved in the care of your baby in the NICU and beyond. Ask what you can do to participate, and know that you are a key part of the care team! Family-centered care for NICU families should be the norm, and representation from HIE families in this care is crucial.
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. Hope for HIE and other organizations have specific resources to build health literacy and advocacy to help along the way.
Debrief with Providers 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, and process what they have been through.
Caring for You & Your Family after the NICU
Know that it’s completely normal to feel increasing anxiety, depression and symptoms of PTSD after discharge. This is often when you move from surivival mode in the NICU to processing what you’ve been through and what may lie ahead in your journey with HIE, across all outcomes. Families should connect with trauma-trained providers and peer support. Siblings of babies with HIE may also need extra support.
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.
Connecting with others who have experienced HIE and birth trauma, no matter if you are a mother, father, other non-birth partner, sibling, or extended family or friend who was also traumatized can help with healing.
Hope for HIE has comprehensive support programs and services for the whole family including specific groups on social media with trained peer support mentors who hold space for your experience, and services provided by credentialed professional staff members.
