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 Jessica McDaniel, a licensed professional counselor, about the role counselors play in the care of families navigating a life-limiting prenatal diagnosis, pregnancy continuation, and the loss of their baby. Jessica has extensive experience working with families facing infertility, pregnancy loss, infant loss, and pregnancy and postpartum mental health issues. She understands the unique challenges facing these families, and her passion and wisdom are evident in her words. Our hope is that this conversation sheds light on the importance of counseling and how that support can be instrumental in helping families navigate and cope with their experiences.
What inspired you to become a licensed professional counselor?
When I was growing up, my cousin came to live with my family on and off for a few years. He became like a brother to me, but he grew up in a home very different than mine. I didn’t understand a lot of the choices he made in his life, even after having been given a second chance of sorts. It was so interesting to me that we were family and yet on very different trajectories in life. My relationship with my cousin, coupled with the fact that I really enjoyed listening to and helping others, propelled me toward majoring in Psychology at the University of Texas. About halfway through my program, I learned about professional counseling, and I knew I wanted to sit with people and help guide them through a variety of difficult circumstances. I applied for graduate school my senior year of college, and I went on to receive my master’s degree only a few short years later.
In recent years, you have worked extensively in area of reproductive counseling, caring for people experiencing infertility, pregnancy loss, and infant death as well as pregnancy and postpartum mental health complications. How did you end up working in this area of counseling?
For the past seven years, I have been working with mostly women and couples in the area of reproductive counseling. I always tell people that I didn’t really choose this area of counseling; it chose me. As counselors, our personal and professional lives often weave together, shaping our passion for and care of our clients. In December 2010, I had my first daughter, and everything about her pregnancy and delivery was fairly normal. While there was some disappointment surrounding the length of time it took us to get pregnant, I couldn’t have been more satisfied with our first perinatal experience.
When my daughter was around 18 months old, I met with a couple who lost their baby a few months postpartum, and my entire worldview was flipped upside down. Over the next few months, I learned about perinatal loss, grief, and all that comes with it directly from this precious couple and many clients like them that followed. I started taking on more clients who had experienced pregnancy and postpartum loss, and the amount of pain and devastation was enormous. I felt completely ill-equipped and unprepared to counsel these couples, but I continued to sit with them week after week, month after month. I learned as much as I could to best care for them in this season of intense grief, but I felt like I was drinking from a firehouse of information.
In December of 2012, just after my daughter’s second birthday, I found out that I was pregnant again. That Christmas, we were able to celebrate the good news with family and friends, and it was quite a big celebration, as we had been trying to get pregnant for ten months. Within a few months of learning I was pregnant, my husband and I faced our own worst nightmare. Our baby had stopped developing at eight weeks, and I had miscarried.
I knew the odds and that it was possible for me to miscarry, but I never thought it would really happen to me. You can never prepare yourself for what it’s going to be like, even when you are “trained” to deal with something like this. It was one of the most devastating moments in my life. I truly understood, firsthand, that it didn’t matter how “far along” I was. Nothing could replace the baby we lost. Nothing could fix this. I had to grieve.
These moments really solidified my call to help others who were also experiencing their worst-case scenarios. I was different. I felt different, and I haven’t been the same since. I’m okay, now, with how our loss has changed me, because it has allowed me to care for my clients with such a deeper compassion.
Why is counseling a valuable resource for families experiencing reproductive issues or grief? How is counseling also complementary to having support from their team of medical professionals and their community of family and friends?
In working with clients for the past ten years, I’ve seen that most people do not take the time to understand their heart and emotions in the midst of suffering. Pain is painful, so we don’t automatically go toward it. Instead, we try to run as far away from it as possible.
Counseling forces you to “go there” – every single one of my clients has told me that they don’t like coming in and opening up about the worst, most heartbreaking experiences in their lives. But nevertheless, they come in, because they know they will be forced to face the pain in a way that is healthy and productive. They hold out hope that, even though they are scared to go there, they will not stay stuck in the pain indefinitely.
Counseling should function as an extension of community. I provide support in a very specialized and collaborative way, as one part of a healthy support system. I’m not a medical professional, so I cannot give detailed information about a client’s fertility treatment, nor am I the person my clients can call at ten o’clock at night when they are battling intrusive thoughts as they try to sleep. Counselors are there to help people navigate and process their experience and grief through validation, normalization, and providing a safe space, and in that way, counseling complements the care parents receive from their doctors and specialists.
Counseling also gives an outside perspective and objectivity into pain that can be difficult for close family and friends to provide, as they are often enduring the suffering along with their loved one. I am there to provide tangible comfort to my clients, but I also carry the role of being someone who can “speak the truth in love”. I find that my clients benefit most when they have support and care from their medical care team, community of family and friends, and other people who have shared a similar journey.
What types of counseling are available to couples and individuals experiencing perinatal grief and loss? What advice do you have about choosing the right counselor?
There are so many incredible resources for women, men, and couples at the national, state, and local levels, and I know that it can be both hard and overwhelming to know where to start. I recommend starting with word-of-mouth referrals. Talk with your family and friends in your area, and see if they know of any counselors who specialize in reproductive health. You may have a friend or co-worker who has met with a specific counselor that you can reach out to through email to see about setting up a first appointment or getting more local referrals. Next, I recommend checking with national or state organizations that provide pregnancy and loss resources. Many of these organizations, like Postpartum Health Alliance, have state or city specific chapters, and those smaller chapters like the Central Texas Postpartum Health Alliance typically have a list of resources and counselors broken down by area, rates, and specialties.
Choosing the right counselor for you is important. If you meet with a counselor and don’t think he or she is the right fit, do not hesitate to change counselors. It is so important that you end up with someone who you feel you can trust to lead you through this time. Cost is often an important factor when people are considering counseling and choosing a specific counselor. Some counselors will take insurance, but others will not. However, you can oftentimes get reimbursed through your insurance even if your counselor is out of network. I am a private pay only counselor, so I advise all of my clients to call their insurance before our first appointment to get information about their out-of-network coverage and mental health counseling benefits. Insurance companies almost always cover a certain percentage of the cost of counseling once the deductible is met. If you are going to get reimbursed through your insurance, make sure that your counselor can provide you with a “superbill,” or an itemized receipt that includes dates of service, amounts paid, diagnostic codes, and any additional information your insurance company might need.
Navigating insurance and reimbursement when dealing with grief and loss can be a lot to take care of. If this process feels too overwhelming, I recommend considering other affordability options like a counselor with a sliding scale rate, choosing a counseling intern who is still under supervision, or utilizing low cost or free therapy support groups. Additionally, online communities like HopeMommies can be beneficial for mothers looking for a faith-based community of women grieving pregnancies and babies.
I currently lead a six-week perinatal loss support group in Austin, Texas run by Ronald McDonald House Charities of Central Texas. This support group is a free community resources available to any man, woman, or couple who has lost a baby during pregnancy or up to one year postpartum. The group is there to provide hope and healing in the midst of grief, and it has been incredible to watch group members connect with one another in a short amount of time. Many of the people who have gone through this group have stayed in touch with one another for months and years after the group ended. Support groups are incredibly transformative for people because not only do groups provide a framework for healing, they also serve as a safe space to connect with other people who truly get it. These relationships are one of the most powerful ways an individual or couple learns how to grieve with others instead of feeling isolated and alone in their pain.
“Choosing the right counselor for you is important. If you meet with a counselor and don’t think he or she is the right fit, do not hesitate to change counselors. It is so important that you end up with someone who you feel you can trust to lead you through this time.”
Men and women navigate loss and grief differently, and men are less likely to seek out counseling than women. Why is counseling a beneficial resource for men? What advice do you have for men about counseling?
Men typically process grief in more compartmentalized ways, while for women, it’s integrated into every facet of their lives. Men can often avoid thinking about their loss and are able to do so because of needing to focus on things that lie ahead, like provision for the family, taking care of medical bills, and wanting to support their wives as best as they know how. Men often believe that they just need space to think and process on their own, in their own way, on their own time.
As a result, a father’s grief is often missed, invalidated, easily dismissed, or secondary to the mother’s loss. The emotional and spiritual impact of losing a child is just as real for men, and it needs to be validated and explored as well. My suggestion is to not assume that, just because a father might express his grief differently, it is no less real or significant.
While a man will never know the physical pain of losing a baby during pregnancy or experiencing labor and delivery of a stillborn child, he does know what it feels like to see a sonogram and hear the news that his child has no heartbeat. He does know what it feels like to hold his stillborn baby in his arms before leaving the hospital without his child. The experience of grief and loss is different and looks different, but it is every bit as real, and fathers need the space to process their experiences and grief.
What advice do you have for couples navigating a prenatal diagnosis of a life-limiting condition, the pregnancy, and the time they have with their baby after birth?
To put it simply, I would encourage parents to make as many memories as possible. You may only have a few weeks or months with your baby, and creating meaningful moments and experiences can help parents cope with the loss. Soak up every moment. Take pictures and videos. Choose a special outfit. Take time to just be a family together. In the Bible, there is a verse that says every single one of our days on this Earth are numbered, which means that God knows exactly how long each of our children will be with us. While the number of those days is shorter than the parents would have chosen, they can find moments of joy, gratitude, and peace in every single day the Lord gives them with their precious baby.
I also encourage parents to reach out to an organization like Carrying To Term, whom I am truly grateful for. Carrying To Term is equipped to walk alongside parents and provide them with resources to help them navigate their experience. I’ve seen that the more a couple is able to invite others into their grief, the more resilient they become. The pain will still be overwhelming and devastating, but a couple’s perspective can shift toward processing in healthy ways, getting to acceptance, finding purpose, and creating a legacy.
What advice do you have for couples navigating the death of their baby and the grieving process that follows?
I think it’s important to first acknowledge that each loss is unique; therefore, it is challenging to speak into all the particular ways that grief can manifest for each couple. Each life lost tells a different story, and I believe no one can fully comprehend the complexity of bereavement like the parent going through it. However, there are some general guidelines I use in my practice and groups work that might serve as a helpful framework for grieving well.
When the tidal wave of grief hits, some common ways a couple might begin to regain a sense of control or normalcy is by searching for answers and trying to make sense of what happened. Couples might even find themselves blaming themselves or God, especially when there’s no helpful medical explanation. But when parents stay in this mode, they often have more unanswered questions or fall into negative thought patterns, believing the worst about themselves or their spouse.
Instead, I like to help couples think about what would be most healing for themselves and their relationship. Instead of blaming or distancing themselves from one another, I encourage them to create an open line of communication, so that their grief can be discussed honestly. Men and women often navigate through grief differently, so having a specific time and space to share with one another, even if one does more listening than the other, can prove to be invaluable. In a sense, I encourage couples to grieve together in an intentional way rather than hoping it will happen naturally.
Retelling your story and talking about your baby or babies to help cope with the loss is a very necessary and normal part of the grief process. I encourage couples to share the pain however they can, because pain in us that is not transformed will be transmitted. Otherwise, it will stay stuck inside of you, increasing the worry, anxiety, depression, and hopelessness and will inevitably come out towards others (especially your spouse) through defensiveness or withdrawal.
“Retelling your story and talking about your baby or babies to help cope with the loss is a very necessary and normal part of the grief process. I encourage couples to share the pain however they can, because pain in us that is not transformed will be transmitted.”
In addition to being a licensed professional counseling, you are also a trained biblical counselor. What is biblical counseling? Why is faith-based counseling an important option for families with a practice of faith?
Biblical counseling provides a framework and foundation in which all feelings, thoughts, and questions are filtered through the person and work of Jesus Christ, who makes a way for us to have a relationship with God through faith in Him. As a biblical counselor, one of my highest values is offering a gospel-centered view of change, which means I believe in the gospel, “the good news,” that there is nothing that we can do to earn God’s love and salvation and nothing we can do to lose His love. In my counseling, I rely on the Word of God and the work of the Holy Spirit on my behalf with an aim for clients to know and apply this gospel hope to the deepest places of pain and suffering in their lives. For true and lasting change to take place, biblical counselors take a deep look into the whole person, including mind, body and spirit
Biblical counseling seeks to not only address the presenting issues and suffering common to couples experiencing loss but to also allow room to explore the deeper longings of our soul. God is restoring and making all things new, and I believe that no person is beyond his redemption and grace. As a licensed counselor who practices from a biblical perspective, I’m invited in to speak the truth about God with empathy and compassion in a way that doesn’t minimize the pain or just settle for spiritual platitudes. I can offer a space to let clients doubt or wrestle with hard theological truths, knowing that there is purpose in the process. This framework and space is extremely helpful for couples who have faith in God because it allows them to grieve openly, wrestle freely, and trust that, through the redemptive love and grace of God through Jesus, there is a secure hope we can cling to even in the absolute worst of circumstances. God is faithful, and there is coming a day when “He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore.” (Revelation 21:4)
Counseling is a form of support that is available to anyone at any point in their life. When is a good time for a couple navigating a prenatal diagnosis or the death of their baby to reach out for support?
Not every woman or couple may choose to use counseling as a space to learn about and process their grief, but most of my clients who have lost a baby have experienced counseling as a crucial piece in their healing journey. There are so many resources available, but my best encouragement is just give counseling a try and see what you think. The hardest part is usually the time leading up to that first session. You may not find the perfect fit your first time, but that is still a brave step forward in your healing journey.
Counseling is a resource that can be beneficial to grieving couples at various points throughout their lives. Many people start counseling after receiving a life-limiting prenatal diagnosis, shortly after pregnancy or infant loss, following triggers in the first year of loss, as anniversaries approach, or as they navigate pregnancy after loss or secondary infertility. Any time grief is raw and exposed, it is a good time for counseling, as it helps people process and work through their grief until it feels manageable to handle in healthy ways on their own, with their partner, or with their community of support. It takes courage and humility to invite a stranger into your suffering, but my hope is that you would experience counseling as a safe place to be just as you are, wherever you are, in your grief.
What advice do you have for the network of family, friends, co-workers, and faith-based community members about caring well for grieving parents?
My main piece of advice is to be thoughtful, considerate, and cautious with your words. Any words are better than no words, because it shows that you are willing to step into and embrace the discomfort. But when you do respond to another late-night phone call or when the parents need to share the story again and again, please consider not beginning any sentence with an “at least,” and be careful to not deflect or minimize their pain.
Here are a few helpful phrases you can say:
- I’m so sorry, I’m sad, too.
- This sucks, and I hate that it happened.
- I don’t know why this happened. I know that God is good, and that He loves you.
- I’m here when you want to talk about him or her or them.
- My heart is heavy and grieved for you.
- I’m will be here for whatever you need. I’m not going anywhere.
- You have every right to feel how you are feeling and you’re right, this isn’t fair.
- This isn’t your fault. You didn’t cause this.
- What has this week been like for you?
This by no means is an exhaustive list, and please know that your thoughtful words can provide such comfort to a friend or family member who is deeply hurting. Please do not assume that they will tell you what they need when they need it, because grief usually impedes a person’s ability to articulate or even really know what they want. Just continue to make yourself available, as often and consistently as you can, and remember the little things like birthdays or anniversary dates . . . not just at the beginning but for years down the road. One of the most significant things to a parent who has lost a child is knowing that their child is not forgotten and will not be forgotten by those closest to them.
If you’re a part of a faith-community, look for opportunities to minister to them through prayer and service. Rally support from the larger congregation who may be able to provide tangibly through meals, lawn-service, gift-cards, housework, or taking other kiddos off their hands for a few hours. Please do not offer empty spiritual platitudes, but rather hold their hands while they cry and remind them of the One who knows and sees all of their pain and will reveal His ultimate purpose in time.
Any final thoughts or words of wisdom?
Parents, caring for yourself is incredibly important during this time, so here are a few of my favorite ways of practicing that self-care and support:
- Give your heart room to grieve and mourn. Nobody else can feel your grief like you besides God, so honor your grief by giving it space to exist, knowing that it will not always be this big and this hard.
- Go on regular walks or coffee dates with a friend or family member. You do not have to do this alone
- Write a letter to your little one(s) and share with him or her the hope you have of seeing them one day in Heaven. Imagine what it will be like to rejoice in seeing them again and praise God for this hope of the future.
- Write a note to your spouse to tell them something you appreciate about him/her. Have an intentional conversation about your marriage and the ways each of you are individually grieving.
WHO WE ARE
Jessica McDaniel is a licensed counselor with over ten years of experience working with clients. She earned her bachelor’s degree in Psychology from the University of Texas before attending Denver Seminary, where she earned a master’s degree in counseling. Today, Jessica works for the Austin Stone Counseling Center, a professionally-informed, biblically-based counseling center in Austin, Texas. Jessica believes deeply that people’s lives are transformed through the power of Jesus Christ, and she is passionate about helping women and couples work towards deeper authenticity and trusting Jesus in every part of their story. Jessica has specialized training in postpartum support, perinatal grief and loss, and infidelity recovery, and her personal experience and expertise has led her to facilitate regular in-person support groups and seminars for women who have experienced trauma, grief, and suffering. Jessica and her husband are both licensed counselors. They have been married for twelve years, and they have three beautiful daughters, the youngest being identical twins. Jessica enjoys volleyball, listening to podcasts, which she is completely obsessed with, and she would love to spend every day relaxing at the beach if she could.
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.