Dispelling the Fear of Talking about Miscarriage and Stillbirth
Photo by Arteida Mjeshtri on Unsplash.
There is no doubt that the topic of miscarriage and stillbirth is very painful and one that most of us prefer to avoid talking about. However, engaging in conversations about it can be very powerful, informative, and freeing for many people. Let me relate to you an experience I had with a friend about this very topic (don’t worry I’m not sharing anyone’s personal experience with loss).
“Oh, that’s too depressing. I don’t want to hear about that,” my friend said while literally folding her arms around her body as if she were wrapping herself in some protective blanket. It was almost as if this action would somehow safely shield her from the anguish or dreadfulness my words brought to mind.
What were we discussing to evoke such a response? The idea of losing a baby. That may sound crass, but the physical reaction you may just have experienced in seeing those words in print is precisely the one - my friend had when hearing them spoken out loud. The thought hurts our hearts. It brings tears to our eyes. The idea of a miscarriage, a stillbirth, or a deceased infant is too heart-wrenching to contemplate. So, we shut it out. We push it away. We choose to think it doesn’t happen…certainly not to anyone close to us.
But sometimes, the unimaginable does happen.
And when we pretend it doesn’t, we isolate individuals in perhaps the most painful time of their lives, and we leave them to suffer in silence and grieve alone in the metaphorical dark.
So, on the day my friend had her reaction, we were having brunch on a lovely patio enjoying the bright spring-summer sunshine. How then did we get onto such a heavy, heartbreaking, and taboo topic? Well, I had been telling her about some of the aspects of the grief work I’m involved in, specifically, the infant and pregnancy loss doula (IPLD) training, which is a program offered by Home Hospice Association that I oversee as the program candidate advisor and training facilitator.
Naturally, the first question she asked was, “what in the world is an infant and pregnancy loss doula?!”
An IPLD is a non-medical professional who walks alongside individuals experiencing a loss related to pregnancy. You might wonder why a role like this is needed. My friend sure did, questioning me at length about it. I explained that some of the most heart-rending words an expectant parent could hear are “there is no heartbeat.” At that point, the air gets sucked out of the room. There are innumerable choices to be made, but overwhelmed and heartbroken individuals rarely know the full range of options available to them. And why would they? This is a path that most of us do not expect to walk. An IPLD can explain some of these options and their potential impacts on the grieving process in a knowledgeable, compassionate, and non-judgmental way. They can do so while being fully available for the needs of the parents in a way that medical staff may not have the capacity to offer.
IPLDs can be present with parents through the process of a loss and bear witness to their pain and suffering. They can guide parents on ways to create memories and develop a lasting legacy for, and bond with, their child as well as guide them through options in laying their child to rest. They can also provide practical aid with tasks such as communicating with family and friends on a couple’s behalf, arranging childcare for older children, dismantling a nursery, removing baby gifts and baby-related items, organizing supports such as meal trains within the couple’s existing social community, and much more. Finally, they may offer ongoing postpartum grief support because the pain continues long after leaving the hospital or the funeral home.
After hearing these details, my friend asked for several examples of what exactly these “options” might be that parents wouldn’t know about on their own. I explained that IPLDs can propose ways to set up the delivery room for parents who know in advance that they will not be birthing a live child. IPLDs can discuss with parents the idea of taking a photo of their child, holding them, reading to them, suggesting that the parents bring two of everything to the hospital (for example, two special blankets one of which their child can be buried in and one they take home as a keepsake).
As I had hoped, my friend began to see the value and significance in this type of grief work. She said that she personally would never think to gather all the standard newborn keepsakes if she weren’t also taking a baby home with her and admitted that having an IPLD explain to her why some parents find it both helpful and comforting would likely encourage her to do it herself. More importantly, she thought it would likely save her from potential regrets in the future, which is an important benefit of an IPLD.
Fully engaged in this topic now, my friend started asking a lot more insightful questions such as whether a birth certificate is needed for a stillborn and how funerals work for these infants etc. She was very pleased to hear that an IPLD is trained in those aspects and can help to answer those questions. I also explained that IPLDs, much like birth doulas, act as advocates for parents and can even serve (as needed and as requested) as an intermediary between parents and medical staff. I nodded emphatically when she said, “so, in a way you’re defending parents’ rights. I feel like in that situation people might feel pressured by the doctors to make decisions in the moment that they may regret later.”
The Good Funeral guide on Unsplash.
Once she was “convinced” (her word not mine) that the IPLD role is important, my friend’s next significant question was:
“Why in the world would someone want to do that?!”
It’s a question I’ve been asked by many others as well. As a death and grief educator, I strive to normalize conversations about death and grief around all types of losses. This includes trying to help break some of the silence and stigma our culture has surrounding miscarriage and stillbirth. The field of grief and bereavement appealed to me in the first place because I love the idea of journeying with people during a difficult time when others tend to fall away. The IPLD program resonated with me in the same way. The more we discuss these painful experiences, the more we communicate that we are safe people with whom others can share their own painful stories. We show people that they don’t have to walk a dark path alone, and we help to educate others on how to better support themselves and those grieving around them.
The more we openly acknowledge the depth of the suffering that comes when parenthood turns into bereavement, the better able we are to support those in that suffering. Silence offers only loneliness and enables shame and depression to take root. Conversation brings connection and connection helps with healing.
I reflected on this as the visit ended. While saying goodbye, my friend took the arms that she had previously wrapped around her own body in self-protection and instead wrapped them around me. She thanked me for being a friend who is never afraid to “discuss the hard stuff” because it is conversations like these that deepen our bond. She then squeezed my hand, looked me in the eyes, and said, “and thank you for letting me know that if the worst thing in the world ever happens to me, there is one person I know I can call who might help make it a tiny bit less awful.”
So many good things came from this conversation between my friend and I. Her willingness to listen allowed me to openly share my passion with her and explain my role as an IPLD. There was also a comforting satisfaction each time she showed genuine interest. As for my friend, she gained a new perspective about pregnancy and infant loss with a better understanding about options available to grieving parents and about procedures and legalities involved in a miscarriage or stillborn death. Not only was the fear and dreadfulness surrounding the subject dissipated, but she also left with a keen appreciation for the role and importance of an IPLD. The goal of the conversation wasn’t to convince her to become an IPLD herself, but simply to share information about my life and discuss an issue that I am passionate about.
The benefit of these types of conversations, though, is that perhaps she will feel encouraged to take her new knowledge of the topic and engage in conversation with others. Regardless, I believe that for both of us the most important thing to happen that day is that my friend now knows that if the “worst thing in the world ever happens,” she does not need to be alone. If we all continue to have these difficult conversations, then hopefully no one will have to be either.