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 Elaine Cavazos, a Licensed Clinic Social Worker, about the importance of social workers, both for families and as contributors to a care team. Elaine has dedicated her career to serving families who are navigating the worst experiences of their life, and her insight, compassion, and dedication shine through her words. It is our hope that this conversation highlights the critical role that social workers play following a diagnosis.
What is the difference between a Licensed Clinic Social Worker (LCSW) and a Licensed Master of Social Work (LMSW)?
There are three main types of social work licensure in the state of Texas, and they are: LBSW, LMSW, and LCSW. Each level of licensure allows a social worker to do different types of work. The LBSW stands for Licensed Bachelor of Social Work. The distinction though that most directly applies to grief and loss counseling is the LMSW v. LCSW.
An LMSW, or Licensed Master of Social Work, can provide grief and loss services in settings such as hospitals or grief and loss centers or practices. However, if they are working in a clinical setting and are interested in pursuing a private practice on their own, they must be supervised by an LCSW. An LCSW, or a Licensed Clinical Social Worker, is someone who has completed these hours of supervision and passed an independent licensure exam. They are able to practice in any setting without the requirement of direct supervision.
What inspired you to focus your practice on reproductive counseling?
I worked at Texas Children's Hospital very early in my social work career. I was placed with the Pediatric Cardiology department as their primary social worker and as such, I covered the Cardiovascular ICU and Neonatal Intensive Care Unit. I worked with many families who had a diagnosis of a fatal congenital heart anomaly in utero and/or shortly after birth. This work provided a strong foundation for me in learning how to work with a medical team and surrounding community to support these families. I also learned how to be with parents when they heard the very worst news about the health of their baby.
I moved to Austin in 2000 and remained interested in developing my expertise in postpartum mood disorders and perinatal loss. I was a PRN social worker, so that meant that I was basically a "temp" or "floater," and I was often placed in the labor and delivery units at Brackenridge, Seton Main, and Seton North hospitals. It took a while for me to gain the extra training that I felt I needed to start providing these services in the clinical setting, so I took a few years off to think about how to best go about all of that. During that time, I worked as a Clinical Faculty member at the University of Texas at Austin Steve Hicks School of Social Work.
In 2011, I was asked to join the clinical team at My Healing Place, a non-profit grief and loss center, to run their MSSW student program (graduate level social work students). The Executive Director of the organization was keenly interested in my work with pregnant and postpartum mom's and allowed me to build my practice there with a focus in postpartum mental health and perinatal loss. A majority of my clients at My Healing Place (now called the Austin Center for Grief and Loss) were mothers who had experienced a still birth or infant death. I found this work to be very challenging and meaningful.
What role does a clinical social worker have throughout pregnancy, especially for families that have received a prenatal diagnosis of a life-limiting condition and are preparing for the loss of their child?
I think social workers are uniquely qualified to understand the systems of support that exist for these families when they are facing this unimaginable situation. They know the importance of allowing the family to have as much control as possible during this time when so much is out of their hands. Social workers often have the educational and experiential background that informs them of the grief process and how to help families navigate the big and complicated emotional and physical experience of loss. Social workers are trained advocates and are known as an integral part of the medical team where they play a role in ensuring that the family's needs are met.
How does a clinical social worker offer support in preparation for and even during labor and delivery in cases where families know their child will either pass away prior to delivery or shortly after?
An LCSW, or clinical social worker, can help a family by providing individual therapy services before and after delivery. They can talk through the mental health needs of the birth partners and help them understand the many symptoms of grief. LCSW's are highly qualified to look for signs of complicated grief or even symptoms of a perinatal mood disorder that might be surfacing alongside the grief experience. Any therapist who works with clients who are grieving knows that the difficult emotions that come with that process should not be pathologized. Grief is a natural response to loss. However, a grieving postpartum woman may also be experiencing difficult symptoms such as heightened anxiety as a result of the physical changes she is going through. A perinatal-trained therapist will know to watch those symptoms and work with the woman to get the help that she needs.
What does support from a clinical social worker look like as a family transitions from pregnancy to labor and delivery to life after loss?
Hopefully, the social worker is an integral part of the in-patient hospital services. That social worker can help direct the family to resources in the community upon discharge and advocate for the family during their hospital stay for their desired labor and delivery experience. An in-patient social worker can provide brief therapy or counseling support during the hospital stay. Collaboration between the obstetrician, the in-patient social worker, and the therapist in the community can be key for these families, so that the transition from one area of care to the other is as smooth as it can be.
How long do you support a family after the loss of their baby?
I usually see couples for the first two to three visits and then, generally, move to working with just the mother on an ongoing basis moving forward. The approximate length of treatment can be up to a year, but it depends on a couple of factors. I will typically see mothers for longer than a year if they want to try to become pregnant again. We work closely during that subsequent pregnancy to process any feelings of anxiety and ongoing grief as it progresses. We also work together on creating a mental health birth plan, collaborating with the obstetrician to make sure everyone is on board with what the parents need during this very delicate time.
Sometimes, parents will want to take a break from individual therapy, so that they can attend a support group or a grief retreat. It's important to also note that individual therapy is not necessarily what a person needs after a loss. Some parents are very connected to support in their faith community, family and social networks, or with other sources of support, and they prefer those outlets as places to work through those feelings. I tell parents that this is their journey, and they are the experts in terms of what they need to best guide them through this difficult time.
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 clinical social worker contribute to a multidisciplinary care team for carrying to term parents?
One of the biggest roles that social workers play in these interdisciplinary teams is as the advocate for the family. The social worker will hopefully get ample opportunity to meet with the parents, understand what they want in terms of emotional support, and then communicate that to the medical team. The social worker will also work to understand if there are any environmental or social stressors that are impacting the family such as financial concerns, childcare concerns for other children in the home, a lack of a supportive family or social network (meaning are they potentially in Austin with no family support), having difficulty with making funeral arrangements or even knowing what they want to do once they leave the hospital in terms of planning a service or not, and, of course, linking them to follow up mental health support.
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 clinical social worker help families protect and make memories in the precious time they will have with their child throughout pregnancy and after delivery?
The responsibility of things like creating a memory box or calling Now I Lay Me Down to Sleep for photos falls on different professionals in almost every setting that I've had the experience of working in. Social workers play a big role in advocating in the in-patient settings for families when they want to have these community-based services or extra time with their baby. While I was working at Texas Children's Hospital, it was often my responsibility to make the memory boxes and to advocate that families have as much time as they needed with their child following their death.
You are trained to treat perinatal mood and anxiety disorders. Why is that support so important for women and families? How do perinatal mood and anxiety disorders affect bereaved families? Is there any specialized support offered to bereaved families who are also navigating perinatal mood and anxiety disorders?
I believe it is essential for anyone working with perinatal families to have an understanding of perinatal mood disorders and how they can impact a grieving parent. We understand that pregnancy is a time of great change in terms of hormones and other physical processes. The dramatic drop in the levels of progesterone and estrogen at the time of birth can cause a woman to experience changes in her mood. It's very hard to know when those changes are due to grief or these hormonal shifts, and what's understood is that it is a mix of both. Grief can cause anxiety and physical symptoms such as insomnia, headaches, changes in appetite, mood swings, anger, rage, and so on. These are also all symptoms of a perinatal mood disorder as well.
I tell families this when they come for their first appointment, and I let them know that I'll be listening to their symptoms and watchful if I think they are worsening or becoming very intense. If that is the case, sometimes we have to increase the number of therapy visits and/or consult with a medical provider to make sure that there are no underlying physical reasons that may be worsening her symptoms. It's important to also note that partners are also susceptible to experiencing these postpartum mood changes and it is one of the reasons that I like to see them in therapy a few times to assess whether or not they need extra individual support.
What advice or insight would you offer to medical professionals about the mental health and unique needs of carrying to term and bereaved parents?
These families need time to process and understand what is going to happen to them in the delivery room. As much as possible, it's important to give them choice and control. If they have created a birth plan, my hope would be that they experience support from their medical team that includes honoring that plan as much as possible. I hear time and time again that grieving parents appreciate their medical team when they listen, when they slow down, and when they express empathy. In fact, many express gratitude upon receiving a follow up note of support from their nurse or physician. These families appreciate knowing that their experience made an impact and is remembered.
As a clinical social worker who focuses on reproductive counseling, what advice do you have for parents facing a prenatal diagnosis of a life-limiting condition and the loss of their child?
If you have it, gather your family and social support networks around you. I know this can be tough sometimes because not everyone has the type of support that they want or that feels good to them. But when you do have a good network, it's important to feel comfortable asking for support from them. I often tell families that there are resources online for how to support grieving parents. One such resource is a blog for grieving parents at Seleni.org. I encourage parents to print these posts out or have a loved one do it for them so that the support they receive feels good and the people around them have a sense of what to say and what not to say.
I would also encourage the parents to think about what they might need in terms of mental health support. When possible, studies seem to show that receiving therapy while pregnant helps in terms of processing the difficult emotions both before and after the delivery. However, in the case where there isn't enough time to do this, I would encourage the parent(s) to think about what works best for them when they go through difficult times and to know that it doesn't look the same for everyone. Couples often struggle during grief because they don't need or want the same things-even though they're both grieving. It's important not to think about that in terms of there being something wrong in the relationship. This is very typical for grief and something that can be talked through and understood with the help of a grief professional.
Who We Are
Elaine Cavazos, LCSW has over 25 years of experience in the field of social work. Her career includes experience as an assistant clinical faculty member at the University of Texas at Austin Steve Hick’s School of Social Work from 2003-2010, and she continues to work there as an adjunct professor with a focus on teaching grief and loss courses. Elaine owns a private practice where she focuses on providing psychotherapeutic services to clients looking for help with pregnancy and postpartum mental health issues and/or perinatal loss. She also serves as the Board President for the Pregnancy and Postpartum Health Alliance of Texas. Elaine served as the chairperson for the inaugural University of Texas Maternal Mental Health and Wellness Conference in April 2017 and is leading the planning committee for this same conference in the spring of 2019. She also currently serves as a board member for the Austin Center for Grief and Loss.
Carrying To Term is a national 501(c)(3) nonprofit organization dedicated to broadening access to non-directive educational, logistical, and emotional support for prenatal diagnoses of life-limiting conditions. For more information, please visit www.carryingtoterm.org.