Providing help in difficult times: Portland VA creates pregnancy and infant loss support group

In August 2015, the VA Portland Health Care System’s (VAPORHCS) deputy chief of staff approached me and asked if I would meet with a Veteran who was interested in developing services for female Veterans who had experienced the loss of a baby.  Though not familiar with the details, this sounded like it could become a part of the Chaplain Service-lead bereavement program ran through our loss and grief groups at VAPORHCS facilities.

I was given the contact information for Tamara Wedin and I reached out and scheduled a meeting.  Meeting Tamara was more than an occasional meeting with a Veteran; it was a life changing event for me.

Tamara is a U.S. Army Veteran who deployed during Desert Shield/Desert Storm. While Tamara is a “loss mom” – meaning she is one of a growing number of female Veterans who have experienced a pregnancy or infant loss — she  is also an extremely caring mother who takes her “rainbow child” (a child born after a pregnancy or infant loss) to her appointments while her other child stays with her Army Veteran husband.

When Tamara began talking, I had to hold onto my seat.  She shared startling statistics about the number of female Veterans who have had pregnancy or infant loss in the VAPORHCS area in past years. She was incredibly knowledgeable about local and international resources for people in the loss community and she was well in-tune to the language that is used in the community to include persons who have experienced loss during pregnancy, whose babies died prior to delivery, whose babies died at delivery and whose infants died during the first year of life.

I was aware of these loss issues, but from a different perspective.  I discovered that I was a “rainbow baby.”  I knew that my parents had a twin who died at birth.  It was a story I had heard most of my early life.  I knew that it was a feature of all my interactions with my parents and that it had been a part of my grandparents’ life story as well.  I learned that these losses do not easily go away.  They continue to weave their way into the lives of those persons who were the parents, grandparents, siblings and family friends who experienced the loss.

It has been identified that there is a high incidence of Veterans who have post-traumatic stress disorder or have experienced military sexual trauma in addition to their pregnancy and infant loss. There is also documentation that significant others of active duty military males who are deployed have experienced loss.  I learned that most of the world does not like to talk about pregnancy or infant loss.  But not talking about it does not make it any less real.  When I started to talk with staff and others about this group of Veterans, I quickly discovered that someone in nearly every conversation I had either experienced this loss or knew someone who had.

Tamara pointed us to this deep and unmet need for women Veterans. This was our opportunity to take action to help Veterans who have gone through this tragic and incredibly emotional experience.

In partnership with Tamara and others in the loss community, in August 2015, VAPORHCS held its “Wave of Loss – Day of Hope” event in the Healing Garden at the Portland campus.  At the event, female Veterans and their spouses, partners or family members could make a flag and display it in remembrance of their lost baby.  The event was well attended and seemed to be greatly appreciated by those who attended.  Female and male Veterans, their spouses and partners, siblings, grandparents, and employees from the VA and Oregon Health and Science University (OHSU) also attended.  It was a powerful time of gathering, remembering, sharing stories and honoring the babies these families had lost.

A second event was held in October 2015 –a symposium, health fair and discussion.   Our local research discovered a host of agencies in the community who care for people in the loss community and were interested in extending their services to Veterans.  Up until then, female Veterans and their significant others who experienced pregnancy loss had to find these agencies on their own, through social media or through word of mouth.  As our scope broadened it was clear that providers in our system were not aware of the special needs of these Veterans because in the community, as in the VA,  many are uncomfortable talking about the sensitive and very emotionally charged topic of dead babies.  Twenty community agencies were invited to be a part of this event and 18 participated providing first hand stories, information and resources.

Soon after the event a small group of us at VAPORHCS began developing a clinical pathway for our Veterans who suffer pregnancy and infant loss.  This pathway begins with creating awareness for our female Veterans experiencing a loss and walking them through the maze of services and agencies along the way.  We have since invited and collaborated with our partners at OHSU and their staff in the “Bridges Program” in the Palliative Care Division who have extensive experience in this area.  As a work group we have continued to look for new partners and resources with whom to work.

Our group discovered that we were creating a way of providing caring and on-going support services for these Veterans.  We have dubbed our new program “Taps for Babies.”  We have a great team of planners and we have an increasing number of individuals who themselves have become a part of the loss community.  All providers here in mental health, the women’s clinic and primary care have been asked  to join us in recognizing the needs of these families and female Veterans to be recognized as having experienced the type of loss of which few wish to speak.  We can and will grow this program, which to our knowledge, will be the first of its kind in the VA and hopefully can be a model for the loss community to partner in caring for our Veterans and their families in this unique and helpful way.

Three weeks ago, I received a call asking if I could meet with one of our mental health providers and a patient she had coming in for a second appointment.  A 27-year-old Veteran had stopped by our mental health resource clinic with her four-month-old infant in the carrier.  She was asked a few questions by the social worker, who learned the Veteran’s first pregnancy ended in a miscarriage five years ago and she was having a difficult time attaching to the new baby.

What she was experiencing describes what many female Veterans who have had a live delivery or those who have suffered from perinatal loss go through.  While their numbers are unknown, we have identified a rate of 30 percent or better of those Veterans who are followed by our maternal care program are now “loss moms.”  The majority of these women have comorbidity of PTSD, MST and at least one perinatal loss or infant death.

These Veterans often suffer in silence… but there is hope. The young Veteran who recently visited us saw the difference. Her social worker was part of the Taps for Babies program at the VA Portland Health Care System and is getting the Veteran steered towards the help she needs. While this may not be a large segment of our Veteran population, it is one where the impact is life long and demands our attention.

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About the author: Thomas Phillips is the supervisory chaplain at the VA Portland Health Care System.