When my twin sons were born prematurely at 26 weeks’ gestation, my family’s lives were thrust into the whirlwind of the NICU and living daily with the reality of the babies (William and Elliott) being on life support. Having had no prior intense and prolonged experiences with the hospital, and watching helplessly and fretfully as my tiny two-pounders fought for their lives, it’s almost impossible to put into language what the experience was like — it’s as though my memory, in the interest of making me functional again, took away the words to describe many of the sensory and emotionally overwhelming elements we faced during that time.
As a mental health clinician who can look back in retrospect, I can tell you that what I (and my husband) were experiencing was acute psychological trauma. After William’s death at a week old, my son Elliott spent a total of three months in the NICU. Throughout his stay, we experienced a new reality of sorts: one fraught with the constant fear of infection, disabilities, and death. One characterized by new people, new concepts, and new language. One that involved daily decision-making and collaboration with our medical team as to what direction to take, and the costs and benefits of different treatments. It was a reality that felt as if it might never end, but at the same time was incomprehensible to get accustomed to. Its unpredictability and severity were staggering.
The experience of emotional trauma can have a lasting effect on patients, even long after they or their children have healed from the physical reality of it. In psychology we describe this as post-traumatic stress disorder. Although PTSD is typically associated with soldiers in combat or emergency service providers, it’s common for NICU parents to develop the same symptoms, which can hinder their ability to function in their daily lives, damage their partnerships, and even prevent them from having a secure attachment with their babies.
Trauma-informed care is a recently developed theory that involves the shifting of care systems, be they psychological, medical, or otherwise, towards honoring and empowering the client, acknowledging respectfully the trauma they are currently facing or have faced, whilst at the same time providing an environment for care providers that recognizes their own vicarious trauma, and how that may affect their clinical practice.
The benefits of trauma-informed care in the NICU include preventing the (typically unintentional) re-traumatization of a client, improving attachment and thusly the medical outcome of the baby, empowering patients to feel comfortable and capable following the direction of their medical providers, and in addition creating a safe space for staff to process what they’ve been through in their work and by doing so, modeling for clients what it looks like to practice self-care and reflection.
What are the steps to take in developing a trauma-informed culture? Here is a quick overview of a few of the main components:
1. Safety and containment. Confidentiality, professionalism, and awareness are crucial when working with patients who are coping with extraordinary circumstances. Part of safety means developing a protocol for handling confidential information, as well as providing staff with resources for speaking to their own frustrations. Concerns patients may have that seem unimportant or superfluous should be taken seriously to avoid disempowering families or prompting shame. Shame in itself is one of the biggest predictors of the development of PTSD in NICU parents and it is critical to avoid manifesting it.
2. Empathy and empowerment. It’s important to recognize that a patient in trauma is just that: a patient in trauma. Their behavior, emotions, and interactions may be entirely different from what their “normal” may have been. It’s important not only to recognize that, but also to give every opportunity for these patients to have agency in the treatment of their babies. It is crucial that parents are able to provide apt medical care for their babies after discharge from the hospital. Recidivism may become common without empowerment, as anxiety may overtake the caregiving experience for disempowered parents.
3. Caring for the caregivers. This one is tough. Oftentimes doctors, nurses, NPs, social workers, and all members of a NICU care team work so often and so thoroughly that the idea of forcing some kind of “self-care” activity seems unfathomable. However, in my experience, the most common reason the trauma-informed care model fails is due to the fact that caregivers are coping with very serious trauma on a daily basis, with no recourse to process it. What we call “burnout” may simply be the mental and emotional overwhelm of staff carrying the weight of vicarious trauma.
4. Referral when a patient (or staff) is beyond the scope of practice of your abilities as a provider. Although this seems simple, a standardized referral process should be established at every NICU. Therapists, support groups, psychiatrists, books, online resources — all should be provided to families, particularly upon discharge from the hospital, when parents transition to an environment where it may be difficult to access their own resources. Staff should also have access to support that is independent of the hospital, particularly when they’ve gone through significant stress as a result of their work.
Trauma-informed care prevents re-hospitalization, improves communication amongst patients and caregivers, and manifests a safe environment for patients and caregivers alike. In many cases, being aware of the patient’s emotional and mental struggles while they are in crisis can have the potential to stop acute traumatic stress from becoming post-traumatic stress disorder.
The trauma-informed staff with whom I worked at my sons’ NICU made an indelibly positive impression not only on my memory of the experience and my ability to thrive within it, but on my long-term attachment with my surviving son.
Kara Wahlin is a marriage and family therapist and founder, NICU Healing.
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