This post, written by Erin Jantz, originally was published on January 31, 2017, on the ICTG blog.
Often when I speak on trauma and spirituality, I discuss the reality that an organization or congregation is greater than the sum of its parts. Part of keeping our congregations healthy involves caring for the most vulnerable members. Sometimes these vulnerable people are easy to identify as individuals or groups (such as children, women, or the elderly), but sometimes people who otherwise appear to be at the peak of their strength are those who are experiencing deep, life changing traumas. They are hidden among us because their pain is private, but no less in need of healing.
One such group near and dear to my heart are the parents of babies who are currently, or have spent time in the past, in the NICU (Neonatal Intensive Care Unit). This month my family will be celebrating my darling niece’s first birthday. Marking the birth of a human into the world is always worthy of celebration, but a year ago celebration was not the primary feeling surrounding her birth. My niece arrived ten weeks early after a difficult pregnancy and emergency surgery only to be immediately whisked away from her parents. The next months were filled with learning, healing, devastating setbacks, and fierce victories. My niece’s growth and development continue to amaze all of us and while we rejoice in her health now, reminiscing over the last year is a mixed experience.
The March of Dimes reports that 1 in 10 babies born in this country spend time in the NICU because of prematurity, infections, injuries, or other unexpected events at birth or in their early days. Despite excellent care and a positive outcome for many of these babies, 60% of parents who have a child who spends any amount of time in the NICU are at risk for PTSD. One study by the Duke School of Nursing interviewed thirty mothers whose infants had spent time in the NICU and every single one of them had at least one symptom of PTSD as much as six months later. I have talked to parents who are still brought to tears decades later as they remember those early days.
The care needs of a child in the hospital may be more apparent and they are in the hands of professionals. So how do we care for the rest of the family? Those members of the family who are breathing on their own and able to digest food who are sitting next to us as we worship? The new parents of a NICU baby may look as if they are doing “better” than the new parents rocking their infant in the back because they aren’t covered in spit-up and appear to have gotten more than 45 consecutive minutes of sleep the night before. But make no mistake, these families have experienced the painful loss of a dream, and many are haunted by the possibility of death for weeks or months on end with no relief. No matter the reason for, or length of stay in the NICU, a parent’s reaction can range from mild to severe. Many experience grief, numbness, anger, guilt, shame, disbelief, and intense sadness.
These families need a support system that will continue to show up, day after day, for the indefinite future. They need people around them to be flexible as each day brings with it new information and experiences that may be vastly disparate. They need the setbacks and disappointments honored and grieved as much as they need the steps forward and milestones celebrated. These families often suffer in silence because we have few to no social protocols to tell us how to help people in limbo, they need space to give voice to their experience. Like any trauma, they must be allowed to ask their questions of, and make their petitions to, God without judgment from those around them.
NICU families are just one example of the many who may be suffering silently around us. Others may include those with chronic or terminal illness, substance abuse, those who have experienced severe car accidents, or who are the primary caretakers for anyone with the aforementioned conditions. As valued members of our communities, these hidden, silent sufferers and survivors need compassion and care for their, and our, well-being to flourish. May we all have eyes to see and ears to hear.
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From 2012-2020, this blog space explored expanding understanding and best practices for holistic health in the context of spiritual direction.