As parents facing a terminal prenatal diagnosis, finding the right support network is important. Grief is a highly individualized experience. As a result, the type of support you need will vary based on your personal experience, grief, needs, and expectations. Support can take many forms and will likely look different depending on where you are in the carrying to term journey.
As you move through diagnosis, pregnancy, labor, delivery, and then the transition into life after loss, you may find yourself re-evaluating your needs and seeking different types of support. In the same way that grief is not linear, your need for support is ever-evolving. It is important to know that there is no one way to seek support, and you may find yourself needing a completely different network of support than your significant other or even your friend who experienced the loss of their baby.
The most likely places that you will initially find support are through your significant other and then your network of friends and family. The people closest to you will be the first line of defense when it comes to helping you meet your needs. I acknowledge that when you are walking through a situation that is completely out of your control, it can be difficult to relinquish any further sense of independence. The idea of being dependent on your friends and family, or worse, feeling as though you might be a burden can be an isolating and daunting experience.
I fully understand that worry, but I want to remind you that asking for support from the people who love you the most is not burdensome. It is an invitation for them to be a part of protecting the precious time you have with your baby and the time you need to grieve freely. Allow your friends and family to rally around you and lean into the discomfort of letting others in. If you are struggling with how to express the ways in which your friends and family can support you, I have written a helpful post full of information on how to support parents like you in your carrying to term journey. You can find that post here. I encourage you to read it and share it with your network of support.
Over time, you may find that you need more specialized or experienced support than what your friends and family are able to provide. That is perfectly normal and valid. Nothing about what you are facing is easy, and nothing truly prepares you for this experience. Seeking specialized support can help you feel heard, validated, and understood. It can help you normalize your experience and provide insights into the world around you in light of your grief.
There are different types of specialized support, and not every option will be the right fit for every grieving parent. You may find that you and your significant need different types of specialized support. Just as there is no rule that says you have to grieve in the exact same way or at the same pace as one another, there is no rule that says you must seek the same type of support. However, I do encourage you to embrace your significant other's need for a specific type of support and be willing to enter in and participate as needed to help them process their grief.
I am going to discuss four main types of specialized support: individual and couples counseling, in-person support groups, online support groups, and peer-to-peer support.
Individual and couples counseling
Individual and couples counseling most frequently takes place with a licensed professional counselor. Many parents who have experienced the loss of their baby or babies in pregnancy or shortly after the birth have found support and comfort through talk therapy. Simply put, the mission behind individual and couples counseling is not to fix your circumstances or your grief. Rather, it is a way to provide the opportunity to hold space for your grief and have your emotional needs tended to.
It can be incredibly helpful to have time set aside for the sole purpose of processing what is happening and how it is affecting you. Counseling sessions are a dedicated and safe space for you to speak freely about your experiences, your precious baby, and the weight of your grief. Seeking regular support through individual or couples counseling is a form of self-care that can help you endure and balance everything else that will come your way.
Even though the friends and family in your support network can be incredibly helpful and supportive, I encourage you to consider seeking support in this way. Licensed professional counselors have training and experience in supporting people in the most broken of circumstances. They can help you understand the grieving process and how you and your significant other are changed by it They can also provide coping strategies for the moments when your emotions, anxiety, or life circumstances become too overwhelming or hard to navigate. Counselors are also invaluable resources when it comes to helping you learn how to support and communicate well with your significant other.
Relationships are affected deeply by grief. This experience changes you and your significant other, so it makes sense that grief would change how the two of you interact with one another and the world around you. To help you understand and process that, I wrote a post, which you can find here, on the effect grief can have on relationships. That post just scratches the surface of this aspect of grief, and individual and couples counseling can help you further navigate this aspect of your journey.
Speaking from my own experience, attending regular individual counseling was invaluable. I knew that every week I had the opportunity to simply be a grieving mother. That space felt so validating, and it helped me realize that I did not have to be strong or put together or "on" every minute of every day. That time helped me embrace brokenness as a teacher and grief as an expression of love. My counselor helped me understand this new person I had become, and she taught me how to communicate with my husband when we barely recognized one another.
My husband did not need or want individual counseling. Instead, he went with me when I needed him to or when he felt like he needed that support. Individual counseling is not for everyone. Individual and couples counseling does not have to be a long-term commitment. Nothing has to be permanent when it comes to seeking support. It is about meeting your needs as they arise.
If you opt for this type of support, I encourage you to find a licensed professional counselor who has experience working with pregnancy and infant loss. The counselor you choose does not have to specialize in this area, but it is beneficial to receive support from someone who has an understanding of the unique and nuanced needs of grieving parents. If you are unable to find anyone in your area who specializes in or has experience with supporting parents in perinatal loss, I recommend looking for a counselor who has an understanding or experience in providing support for pregnancy and postpartum mental health.
Another thing to consider is whether or not you want faith-specific counseling. If faith is an important part of your life, having a counselor who understands and shares your faith can be incredibly beneficial. If you choose faith-based counseling, I would still encourage you to choose a counselor within your faith who has experience working in the realm of perinatal loss.
IN-person Support Groups
In-person support groups are another type of specialized and formal support. Support groups take a more community, peer-to-peer approach than that of individual or couples counseling. Each support group will have its own purpose, structure, and composition, and it is important that you consider your individual needs and expectations when choosing a support group. Here are some helpful questions to consider:
- What am I looking for in a support group?
- What do I hope to learn from a support group?
- What is the purpose of this particular support group?
- Am I emotionally ready to listen to other people share their own experiences and grief?
- Do I need more of an opportunity to speak about and focus on my own grief right now?
- What is the composition of the group? Is it just for mothers or fathers or are both parents welcome?
- Does the group cover all types of perinatal loss (infertility, miscarriage, stillbirth, neonatal death)? If so, do I feel comfortable with that?
- What training or qualifications does the group leader have? Are they a licensed professional counselor?
- Does the support group take place in a location that is comfortable and not triggering for me? (for example, the hospital that you delivered in might not be a comfortable location for you.)
- What are the ground rules of the support group?
- Is there a set time period for the group? (for example, is this a six-week support group or is it on-going?)
- Am I allowed to attend or not attend sessions as I need or feel comfortable?
- Is this support group faith-specific or secular? Which would be better for me?
If you decide to try a support group, go in with an open mind, and be willing to attend a few sessions before making a final decision. It can be hard to get a full picture or understanding of how a support group operates by only attending one session. If, however, you feel as though it is too damaging or hindering of your own grief after one session, do not feel obligated to continue. Your sole priority is the grief you and your significant other are experiencing. There is a difference between leaning into the discomfort of sharing in an open setting like a support group and feeling like you are triggered in a way that hinders you from processing your grief.
Online SUpport Groups
If you cannot bring yourself to attend a support group in person, but the idea of community-based support is appealing, you might consider online support groups. There are organizations that offer online message boards, groups, and even set sessions like you would find in an in-person support group. Through social media, you can often find both general and diagnosis-specific support pages and groups that might be beneficial for you.
When choosing to participate in online support groups, I encourage you to be mindful and careful. Be sure that you know the organization offering the support group, and if you choose to join one through social media, it is very important that you know how closely the group is moderated. Intense emotions and the distance provided by sitting behind a computer can lead to an unhealthy and even detrimental environment. Just like with too much internet research following a diagnosis, an online support group can provide information that is damaging, triggering, inaccurate, and overwhelming. If you opt for online support groups, it would be beneficial to also have another type of support in place, whether that is through your network of support or individual counseling.
Peer-to-peer support is found through connections with other parents who have walked a similar path to your own. These relationships can be made through connections your licensed professional counselor has, by participating in in-person or online support groups, or by reaching out to your network of support.
When seeking peer-to-peer support, know that you do not have to find another parent who has been through exactly the same diagnosis or experience as you. Even faced with the same set of circumstances, people experience grief differently, but there is a common thread of experience that ties grieving parents together. Despite the cause of the grief, you will find that many of the most important aspects translate and can be a source of connection and comfort.
Speaking from my own experience, I have a community of women who have been through circumstances that have caused them deep grief. Some of those women are loss mothers themselves, others are women who tenderly and consistently walked by my side through my losses, and others are women who know what it is like to sit in the trenches of motherhood. There is not a single woman in my life who has been through exactly what I have, but that does not stop us from connecting, supporting, and grieving with one another. This community was built with the help of my counselor, people who reached out when they heard my story, and through connections that my friends and family had.
This has been the most beneficial and long-running type of support in my life. Peer-to-peer support provided me the chance to hear and learn from other parents who know the same kind of pain that I do. It helped me find the freedom and comfort in the words "me too," and it gave me a sense of lifelong community when I felt entirely alone.
If you want peer-to-peer support, reach out to the people in your life and ask if anyone knows someone you could connect with. Share your story when you are ready, and you will find that people resonate and even feel encouraged and free to share their own stories.
In our experience at Carrying To Term, we have seen how much parents resonate with our stories page. We provide the opportunity for parents to share their stories because we know the value of that kind of connection and validation. If you are interested in sharing your story on our site, we would be honored. You can start that process by filling out the form found here.
You may be wondering why I advocate so strongly for more formal and specialized support. I do so because I know how much is already on your plate. I know from my own experience how much you have to navigate during pregnancy, delivery, and life after loss. Balancing everyday life in the middle of trauma, loss, and grieving is hard. Learning to recognize and understand who you are in the aftermath of it all can be confusing. Struggling to recognize your significant other and communicate with them well can be exhausting. Juggling relationships and outside expectations can be overwhelming. All of those things in their own right are difficult. When you add in the magnitude of the loss and grief that you are carrying, it can feel impossible to maintain balance or some semblance of functionality.
Specialized support in the form of counseling, support groups, and connection with other loss parents can be so helpful as you wrestle with the new challenges you are faced with following diagnosis. In their own way, each one of these types of support can provide you insight and understanding, coping skills, tools for communication, and a place to process. Embrace support, even if you are an internal processor, because it is an important part of integrating grief into your life.
Regardless of the type of support you choose, it is important that you do not walk this path alone. You are not meant to grieve in isolation. You are not meant to bear this heartbreak on your own. Truly, you are not alone, and if you feel that way, please know that there are so many support resources available to you. All you need to do is ask. If you are struggling to know where to begin, let me help you. You can contact me directly through the form found here.