The Truth is… a Discussion with Dr. Joyce Merrigan.
I am thrilled to kick off this blog with an insightful and inspiring interview with Dr. Joyce Merrigan, RNC-OB (Registered Nurse Board Certified Obstetrics), CPLC (Certified Perinatal Loss Care), TIP (Trauma-informed Provider), CBCC (Certified Bereavement Care Coordinator), Clinical Specialist in Maternal Child Health and Perinatal Bereavement Coordinator at Capital Health in New Jersey, and Chairperson of the Capital Health Multidisciplinary Perinatal Bereavement Committee.
Joyce is a leader in developing training and education for health care professionals and providing the necessary care for families who experience pregnancy loss as well as pregnancy after loss. I connected with Joyce during my bereavement doula training and she has been (and continues to be) an inspiring mentor to me in my journey of supporting families dealing with loss. Her story is also that of a mother of young children who decided to follow her heart and pursue a lifelong dream.
The truth is, I’m honored to share her story and perspective on life and loss.
What originally drew you toward working as a labor and delivery nurse?
I’ve always wanted to be a nurse from the time I was a little girl. I used to pretend to “nurse” my stuffed animals back to health for hours at a time with my sister. Unfortunately, I never had the financial means to attend nursing school after my high school graduation, so I entered the workforce as an executive secretary in the world of finance. However, after I had my children, my passion for nursing re-emerged and I decided to train to be an end-of-life care hospice volunteer. Shortly thereafter, I decided to pursue my nursing degree when my children were 4 and 2 years old.
When did you realize you wanted to support families experiencing pregnancy loss?
I was only ever interested in the beginning or end of life in nursing. Truly, nothing in between sparked my interest. My first experience with perinatal loss was during my first job as an RN in Labor and Delivery. I felt an odd sense of fulfillment to be able to facilitate the initial bond between a parent and their baby born still. I quickly came to know that a parent could not begin to say goodbye until they were supported in saying hello. It was an honor beyond description to be present during one of the most painful and intimate of human experiences. This initial experience fueled my need to gather as much information as I could, so I could gain a deeper understanding of this journey that so many knew.
How has this type of support evolved since you began working in this space?
State-based legislation, the “Autumn Joy Dignity and Research Act”, now mandates perinatal bereavement care and outlines the type of care and who is qualified to deliver that care. Labor and delivery nurses are experienced in the delivery of expert, evidence-based perinatal bereavement care and there are specialty certifications now available, in addition to an expanding focus on curriculum development for medical and nursing institutions. In addition, there is a distinct focus on specialty care in reproductive loss “Life Perspectives” and early pregnancy loss in settings outside of labor and delivery, such as the emergency department and same-day surgery departments.
Where do you still see the gaps in how families are supported and how can we change that in your opinion?
The gaps are definitively in the area of education for nurses and providers, as this is not a part of standardized curriculum in nursing or medical schools. Bereavement care is a specialty that requires training to gain knowledge of communication and specialty skills in the provision of authentic care to patients and their families experiencing pregnancy loss. Another gap is practice provision of training for staff in the emergency department and same-day surgery settings as well as pre-admission testing, radiology departments, and providers’ offices. A patient should never return to their provider’s office after a loss and be asked, “how’s the baby!” It is also critical that providers have this conversation (as difficult as it is) with every pregnant person, to raise awareness that babies do sometimes die before birth. The first time you learn that a baby can die is not when it happens to you. A common narrative among families who experience loss is “I didn’t know that my baby could die.” Providers must educate families about daily monitoring of their baby’s movements and encourage them to seek care if a change in movement is noted. Consideration also needs to focus on patient education upon discharge and resources for follow-up grief care. The Capital Health Multidisciplinary Perinatal Bereavement Committee includes members from many disciplines, including emergency medicine, obstetrics, chaplaincy, and social work. We are proud of the work that we’ve been able to accomplish throughout Capital Health to address all of these gaps. One of our most notable accomplishments is the creation of the Rainbow Baby Project, which has allowed us to expand the care we provide beyond that of loss care and into care that celebrates life after a loss. This program promotes healing for families as well as nurses and providers who may have cared for the same family during their loss experience. It is quite common for a family to return to Capital Health Labor and Delivery and request the same RN and provider who supported them through an earlier loss.
As an educator, how do you ensure other professionals are properly trained to care for loss parents?
In the State of New Jersey, we are mandated by the Autumn Joy Act to provide annual education to all of our Maternal Child Health staff. We incorporate this training into the orientation of new nurses and annual education to our providers and nurses during Grand Rounds. We update our education as necessary to include policy and practice amendments and newly created enduring resources to support our grieving families, but also support for our staff who can be considered second victims of the trauma of multiple patient losses. Some staff care for as many as five grieving families in one week. These experiences can weigh heavily on the heart and impact the ability of the nurse to care for patients and for themselves. We provide education to our staff about the importance of self-care, mindfulness, and situational awareness. We also encourage our staff to find their “safe person” with whom they can create a ritual of “unpacking” their experiences and to identify self-care practices that bring about calm and peace.
Tell us about the Rainbow Baby Project at Capital Health and why it’s so important to acknowledge these births.
There are several colloquial terms used to describe the birth of a baby. The “sunshine” baby is the first baby born and survives. This baby symbolizes the joy of initial birth that is free of the trauma, anger, guilt, and grief that results from the loss of a baby to miscarriage, stillbirth, or neonatal death.
The “angel” baby signifies the child that was born alive, or “still,” who has taken their place in heaven. When someone asks a woman, “how many children do you have?” she might say, “I have two living children and one angel baby in heaven.”
The “rainbow” baby is a child that is live-born after an “angel” baby. The rainbow baby embodies the beauty, brilliance, and color that follows the darkness of a storm, signaling hope for brighter skies and the return of sunshine and joy. The birth of a rainbow baby brings about a cascade of emotions for the mother that may include joyfulness, reservation, panic, blame, and sorrow as the experience involves the memory of the angel baby.
The rainbow is synonymous with this special occasion, because of the momentous force behind a mother’s essential need to define the complicated joy that surrounds the birth of their rainbow baby. The rainbow appears after the darkness of a storm that is the grief journey traveled after the loss of a baby.
One of the biggest factors in the grief experience of families who endure fetal loss is the pain that accompanies the reluctance or avoidance of others to mention the name of their angel baby. The use of the rainbow baby door card invites and offers permission to others to ask about the angel baby and provides families with the opportunity to include all of their children in the rainbow baby birth story, thereby making the grief journey a little less painful and the birth story a bit more joyful.
We use a rainbow door marker outside the mother’s room to signify the special circumstances surrounding the birth inside. Every care provider enters the room with a sense of understanding the complexity of emotions the family may be experiencing. The angel baby is included in the birth story of their sibling(s), and we say their names.
We have partnered with Capital Health volunteers who created beautiful rainbow baby blankets and hats, and our junior volunteers created rainbow baby keychains. It is our goal to offer every rainbow baby a personalized onesie made especially for them by a member of our Perinatal Bereavement Committee whose love for her own angel baby, Ella Marie—born still on September 3, 2010 and big sister to three Rainbow Babies—prompted her participation in the Perinatal Bereavement Committee and her contributions to Rainbow Baby families.
What advice would you give to those who have experienced pregnancy or infant loss on how to regain the hope to keep going?
You are not to blame.
Seek counseling. Find the person with whom you feel safe to express your feelings. One who facilitates YOUR journey. It is important that you are supported in the understanding that everyone grieves in their own way and in their own time, and that this is your personal journey. There is no limit to the appropriate amount of time you should grieve, nor is there a point in time where you “should be over it by now.”
In order to move through grief, you must grieve. There will be good moments when you feel guilty for feeling lighthearted and there will be moments where the weight of your grief knocks you off your center without warning. In time, the moments of joy will become more frequent and the waves of darkness will lessen. Allow yourself to feel what you are feeling in every moment. Tears are healing and love enters through the cracks in a broken heart. Journal every day. This becomes a tool to look back on to see how you have or haven’t progressed through grief. Cling to your support person. Know that everyone grieves in a different way and everyone’s grief looks different. Some may find comfort in talking and others may prefer silence. Develop a safe gesture to signal without explanation that you’re having a rough moment, such as a squeeze of the hand. This prompts mindfulness in your support person to be especially sensitive to your needs in those moments. Choose your needs over the needs of others. In other words, don’t worry about what someone will think if you choose to not accept an invitation to their baby shower or child’s first birthday. It is painful to witness the joy of other parents celebrating their children when you’re grieving the loss of yours. This is a time where others must extend their grace to you and understand what you are going through. But know that not everyone you encounter will understand, and many may be well-intentioned but say something that is painful for you to hear. There will come a day when you’re willing and able to re-enter life’s celebrations. Time is the greatest gift you can give to yourself. One moment, one hour, one day at a time. Keep their memory alive. Say their name.
