The experience of receiving a prenatal diagnosis of a life-limiting condition leaves families with many questions and complicated emotions to navigate. A key part of feeling fully-informed and equipped following a diagnosis, throughout pregnancy continuation, and in the bereavement period that follows loss, is having access to the insight and support provided by a multidisciplinary care team. Each member of a family’s care team serves a unique purpose, and Carrying To Term is here to help shed light on the role of each professional.
Carrying To Term was fortunate enough to have the chance to talk with Laura Ricketts, a birth and bereavement doula, about the importance of bereavement doulas, both for families and as contributors to a care team. After navigating personal experiences with loss, Laura turned her pain into purpose and began to serve other grieving families as a doula. She has shared her wisdom with us, and it is our hope that this conversation highlights the role that bereavement doulas play following a diagnosis and loss.
What is a doula? What is a bereavement doula?
The word doula comes from the Greek language, and it means 'woman who serves.' Typically, a doula supports and assists a family before, during, and after pregnancy, labor, and delivery. Some doulas are postpartum doulas, and they support and assist families only after the birth of their baby.
A bereavement doula or a "loss doula" is a doula who walks with, supports, and helps families who are experiencing the loss of their baby, whether that loss is through miscarriage, stillbirth, or a diagnosis that means the baby will not live long after being delivered.
What inspired you to become a doula, especially a bereavement doula?
I became a bereavement doula before I became a labor and delivery doula! I experienced seven of my own losses-all different, all at different stages of pregnancy, and some rather traumatic. But what actually made me search for how to become what I am today was being with my dearest friend as she labored and delivered her little baby who was already born into Heaven before being born on Earth. If you are at all familiar with Mother Teresa, it was my "I thirst" moment. I realized both through my own experience and through being there for my friend that there is a disturbing lack of resources, help, and information and support for women and families facing loss.
What role does a doula have throughout pregnancy, especially for families that have received a prenatal diagnosis of a life-limiting condition?
A doula, like me, who supports families experiencing a loss or an unexpectedly difficult or life-limiting diagnosis, offers a variety of services and accompaniment to women and families. This often includes in-person support through meetings before delivery, during labor and delivery, and afterwards. As a labor and delivery doula, I assist the mom in labor to work with her body and bring her baby into the world. I know different techniques, positions, massage points, and use some handy tools in my doula bag like oils, a rebozo, and more to help mama through her labor and delivery.
The role of a doula in this situation also includes resource and information sharing and gathering. I often tell my clients, "don't Google! Let me gather info and research for you, it is part of what I do! And then you don't have to sift through the scariness of what you can find when ‘Dr. Google’ goes overboard!”
Doulas are meant to be impartial. We offer information on options available to the parents, so they can make informed decisions on how to best love and care for their baby for as long as their baby is with them before and after birth. After delivery this includes helping the family say hello to their baby, to bond with their baby, and to see their baby and NOT their baby's diagnoses. Sometimes, babies with a life-limiting diagnosis need attention in the neonatal intensive care unit, so I also help mom and dad see beyond the wires and tubes and beeps to just see their little one and to bond and advocate for him or her.
After delivery this includes helping the family say hello to their baby and then goodbye. Gently encouraging them to form a bond with their baby, to love their baby. To make memories with their baby. In those circumstances, doulas guard the space of the family as they make memories that must last a lifetime. In situations where the baby passes away, I remain available to the family after their final good bye to their little one to assist with grief and loss counseling.
What does support from a bereavement doula look like as a family transitions from pregnancy to labor and delivery to life after loss?
Just as the family transitions, so too does the support offered by a doula. During pregnancy, there is a lot of emotional support and resource and information sharing. Parents may hear a lot of words they don't understand, read notes on doctor's charts that they aren't sure about, and need some help wrapping their minds around everything going on with their baby and the mama's body. The doula helps interpret the "doctor-speak" and can send information and resources specific to the loss that is expected or occurring.
Sometimes, it means making a miscarriage kit available to the mama, so she is ready. Sometimes, it includes sending her information on all her options as they pertain to how, where, and when she will deliver the baby who may already be sleeping. Sometimes, it means helping the family write several birth plans: one for if their baby is born alive, and another for if he or she isn't. Sometimes, it means helping the family find local burial resources and contacting funeral homes.
As labor and delivery approaches, the support offered becomes more about getting the mama's body ready for labor and her heart ready to see her baby and have to say goodbye. After delivery, the support offered is focused on helping the family through memorializing their baby, whether privately or with a funeral or burial. Once the family has said goodbye, once they have memorialized their little one, once the flowers and meals stop coming, the doula is there to support mama as her body heals from delivering a baby and her heart begins to grieve before it too can heal. Navigating grief and helping families step out on the path to healing and learning how to live with the fact that their loss is a part of their "new normal" is just as important as all the support that has led to that point.
How long do you support a family after the loss of their baby?
I do not put a time limit on how long I will support family. I understand that grief has its own timeline and so does healing. I am available for as long as a family feels they need my continued support.
We encourage carrying to term parents to gather and utilize a multidisciplinary care team that includes their obstetrician and/or midwife, perinatologist, specialists as needed like pediatric cardiologists or neonatologists, palliative care, geneticists, social workers, nurses, therapists, and chaplains. How would a doula contribute to a multidisciplinary care team for carrying to term parents?
As part of a multidisciplinary care team, the doula provides something that which is both essential and necessary for healing: continuity of care. OBGYNs often are part of a practice, nurses come and go and change shifts, social workers and case workers are not always available after hours or in person as soon as they are needed, and sometimes work as a team themselves. Often as part of the larger support team for the parents, the doula can assist to parents in knowing how to best utilize all the different people, specialists, and resources available to them.
Our mission is not only to equip, inform, and support parents to navigate a prenatal diagnosis and the process of pregnancy continuation. We also provide resources, support, and encouragement to help families embrace the time they have with their baby. How does a bereavement doula help families protect and make memories in the precious time they will have with their child throughout pregnancy and after delivery?
It is always important in this ministry to remember that as a doula, I cannot make memories for my clients, just as I cannot grieve or heal for them. I can give them ideas on how to make memories with their baby. I can offer encouragement and guidance to the family, so that they don't miss opportunities to make memories. Sometimes, the most important thing that I do is to simply "give permission." I give families permission to make memories, to be very intentional about how they spend their time and how they choose to be a family with their little one.
You have your own experience with perinatal loss. How has your experience shaped the quality of care that you provide to the families you serve?
I think my personal experiences complement my professional knowledge, because I know the profound impact loss, grief, and uncertainty can have from having experienced it versus having read or just learned about it. I know there is a need for what I do, because I have personally lived that need. I also think my personal experiences help me to be more empathetic and understanding. Grief doesn't always make sense, and having lived through that, I can understand the complicated and sometimes confusing emotions of the parents I help - I had them, too.
As both a bereaved mother and a trained professional, what advice do you have for parents facing a prenatal diagnosis of a life-limiting condition and the loss of their child?
The advice I always give to parents is to not be afraid to make memories. I would like parents to know that never once have I heard a mom or dad say "I wish we had made less memories. I wish we hadn’t made that a priority." All too often, I hear that they wish they had made more memories. Don't be afraid to prioritize that.
The other advice I have is to give yourself grace. Give yourself permission to not be ok. No parent should ever have to bury their child or watch their child struggle or suffer, but that is the reality of our humanity. So, give yourself grace to not be okay with it. Give yourself permission to be sad. To be angry. To be afraid. To grieve. These feelings are normal and necessary, and unless they are allowed to be felt, they will cause more hurt and pain in the long run. Sometimes, the only way to get through uncomfortable feelings is simply to feel them, and the only way to begin to heal is to allow yourself the time and feelings necessary to grieve, and then to go through it.
who we are
Laura Ricketts is a wife, mother, and wearer of many hats. She is a Client Manager for And Then There Were None, Vice Chair of the Guiding Star Project, and a Birth and Bereavement Doula for FiLumena, a birth and bereavement support ministry. When she isn’t wearing one of those hats, she can be found kayaking, crocheting, or exploring with her husband, her kids, and her cats in the Shenandoah Valley of Virginia.
Carrying To Term is a national 501(c)(3) nonprofit organization dedicated to broadening access to non-directive educational, logistical, and emotional support resources for prenatal diagnoses of life-limiting conditions. For more information, please visit www.carryingtoterm.org.