Understanding stillbirth

What if there was a trauma that affected 25% of our adult female clients? Wouldn’t we want to know about it? This isn’t just a hypothetical for counselors, yet chances are that we as clinicians are ill-prepared to effectively identify and treat our clients who fall into this population.

In the United States, 1 in 4 women experiences some form of infant or pregnancy loss. Included in this statistic are the more than 26,000 women who experience a stillbirth each year. A stillbirth occurs late term after an otherwise healthy baby could have survived outside of the womb. Stillbirth often is defined as the death of a baby after 26 weeks’ gestation.

Long before my decision to get my education and become a professional counselor, I became one of those 26,000 mothers. It was only natural that the area of stillbirth would become an area of interest for my own research during my doctoral studies. It was my experience in my job, however, that led me to see the gaping hole in our field of professionals who are competent and knowledgeable enough to provide help. Each time a new referral came in that had reported any kind of pregnancy loss, she was immediately referred to me. This was because most people hold one of two positions: 1) The person who has experienced what the client is experiencing is the best person to help the client, or 2) I cannot help someone with something that I have never experienced myself.

This flawed referral process creates an issue with our profession being able to provide quality care to clients who have experienced stillbirth. Referral of these clients solely to those counselors who have experienced stillbirth themselves can be harmful to both the client and the counselor. The counselor may become overwhelmed at the number of clients with this specific need so close to her own traumatic experience, potentially resulting in burnout for the clinician. An equally disturbing result of this referral process is that other counselors are denied the opportunity to treat and learn from this population. This keeps the number of competent counselors lower than is needed.

Understanding the trauma

The death of a child is an unexplainable pain. Author Jay Neugeboren famously wrote, “A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. There is no word for a parent who loses a child. That’s how awful the loss is.” It feels unnatural for parents to outlive their children, regardless of the child’s age when he or she dies. However, stillbirth presents unique characteristics that make this scenario even more complicated for bereaved parents.

The experience of stillbirth has a high level of ambiguity. The death of a baby leaves so much unknown, and mothers often find themselves wondering why their baby died, what their baby would have looked like had he or she grown up, what the child’s voice would have sounded like, and how their family would have been different had the child lived. This ambiguity often leads to the death having a lack of meaning, in that the mother is often searching for the purpose of the child’s life. Mothers might repeatedly ask themselves questions such as “Why me?” or “Why did God give me a baby just to have it die?”

Stillbirth does not involve only grief; it also involves a trauma or multiple traumas. Most people think that stillbirth occurs when the parents are told at delivery that their baby was born dead. This is not the case with modern medicine. Typically, the parents are alerted to the death of their baby before the delivery, and the mother then has her labor induced. The news of hearing that their baby is dead begins the first trauma.

The trauma continues during labor and delivery, which is now the antithesis of the joyful experience the mother had anticipated over the course of her pregnancy. Sorrow and silence replace what were once expected to be feelings of elation and the sounds of a new baby crying. After the painful experience of the labor and delivery, the mother is given the option of seeing her baby. Depending on how long it has been since the baby died, the appearance of the baby might be affected. Some mothers choose to see the baby and will hold, rock and take pictures of their child.

After delivery, the mother is moved into a room that is often located within the labor and delivery area. The trip from the delivery room to her recovery room exposes the mother to sights and sounds such as banners proclaiming “It’s a boy!” and other families’ loved ones cheerfully gathering in the hallways to see their own bundles of joy. The grieving mother’s room is empty and silent. Her door remains shut in an attempt to drown out the sound of crying newborns from other rooms.

After a couple of days of hospital care, the mother is sent home and must tend to her recovering body. In the days that follow, she will develop the same physical response to childbirth that a mother with a living child would. Mothers who have experienced stillbirth are often encouraged to bind their breasts to “dry up” their milk.

Within a day of delivery, the mother must make decisions about the autopsy and burial options for her baby. The mother must wrestle with the decision to keep the casket open or closed during the funeral or burial service. This decision is often based on the appearance of the infant at birth (because the skin of a baby who is stillborn is frequently affected). A tiny casket is often presented and seems out of place in the environment of the funeral home.

If the mother or father is employed, their time off goes by quickly before they must return to what is expected to be their “normal” life. In many cases, paid time off or bereavement leave is not provided to these parents because the stillborn child was never considered a living person. The parents do not receive a birth or death certificate for their child for the same reason. For a birth certificate to be given, the baby must have shown signs of life after delivery, even if it was only for one breath or heartbeat. In most states, a stillborn baby cannot be claimed as a dependent for tax purposes. (Tip: Some states offer a “stillbirth certificate”; this may be a resource for clients if appropriate for their treatment.)

Best practices for screening

In many practices, the intake process includes a generic demographic question for reporting family size. This might include a fill-in-the-blank option for the client’s number of children or number of living children. (Tip: Replace “number of children” with “number of pregnancies, number of live births, and number of living children.” This ensures that all areas — miscarriage, stillbirth or the later death of a child — are covered.)

Screening for stillbirth through the demographic paperwork is the first step. This initial paperwork offers a small glimpse into the client’s full story. Reviewing the paperwork prior to the initial clinical interview will alert the clinician to the need to discuss the client’s experience of stillbirth (if the client discloses it in the paperwork).

The clinical interview can be difficult for both the counselor and the client when it comes to discussing a stillbirth. Because of social expectations and the ambiguity of their loss, women are less likely to report a stillbirth than they are other experiences. It is much easier for a person to put a number on the intake paper regarding number of pregnancies and number of living children than it is to openly bring up a stillbirth during the clinical interview. For this reason, direct questioning on the part of the counselor is vital.

Counselors may initially find it uncomfortable to directly ask clients about any type of pregnancy loss. It is important for counselors to practice using the correct terminology and language appropriate for a stillbirth. Additionally, they should get comfortable with other terms that the mother might use, such as died, death, dead baby, dead child, etc. It may be beneficial for counselors to practice using these terms out loud with a trusted person to become more comfortable saying them. When counselors are comfortable discussing stillbirth and other pregnancy loss, clients are likely to recognize this and move to a higher level of openness about their own experiences sooner rather than later. This allows for the therapeutic relationship to develop at a faster pace, leading to more rapid treatment results and a higher client retention rate.

For many clients, the disclosure of a stillbirth might happen later on or might never happen, due in large part to societal views of stillbirth (e.g., they do not “count,” they never existed, mothers must “move on”). This will hamper the overall depth of the therapeutic relationship and can also prevent appropriate treatment of the trauma.

Need-to-know factors

As counselors, it is our responsibility to ensure that we are knowledgeable about the variety of issues that our clients face. With such a high prevalence of stillbirths, it is important that we truly understand this experience to provide competent treatment. There are several key points of which counselors need to be aware.

>>  Social supports: Not surprisingly, the presence of strong social supports has shown to be an important factor in a person’s recovery following a stillbirth. These supports can include a spouse or significant other, family members, friends, and involvement in a church or religious community. A person’s support system often diminishes following a stillbirth because of the “hushed” nature of the experience.

>>  Use of clients’ language: Mothers of stillborn babies will often give their babies a name. If the client uses the baby’s name in session, the counselor needs to refer to the stillborn child by name and not as “the baby.” The mother may be hesitant to speak the baby’s name, again due to the hushed nature of stillbirth. It can benefit the therapeutic relationship for the counselor to ask, “What would you like for me to call the baby?” This also avoids the question, “Did you name the baby?” which could imply that the mother should feel ashamed if she did not name the child.

>>  Suicidality: Mothers who have experienced a stillbirth often report feeling like “I want to go to sleep and not wake up” or “I don’t want to live anymore.” It is important to understand the difference between these thoughts and active suicidal ideation. This is especially important because these mothers often experience postpartum depression along with the grief and trauma from the stillbirth.

>>  Postpartum depression: Mothers who deliver stillborn babies are not exempt from postpartum depression. This can lead to the complex issue of depression tied with grief, trauma and, sometimes, psychosis. Many people, including clinicians, make the mistake of assuming that these mothers are dealing with “only” grief, “only” postpartum depression, etc.

>>  Trauma: Stillbirth is often thought of as producing grief or depression. Approaching it only from this lens, rather than also understanding the trauma associated with the experience, can cause treatment to be ineffective. This limited approach can also prevent the client from feeling fully understood, leading to a poor therapeutic relationship.

>> Comfort terms: The experience of stillbirth is often silenced and met with a “move on” expectation in society. In part for that reason, it is important for counselors to recognize and avoid using common comfort terms. These include:

•  “At least you know you can get pregnant.”

•  “This was part of a plan.”

•  “Thank goodness you have your other children.”

•  “It wasn’t meant to be.”

•  “There might have been something wrong with it.”

>>  Long-term presence: The mother’s close relationships may become strained or even dissolve in the aftermath of the stillbirth experience. Divorce rates have also been found to be influenced by the experience of stillbirth. If not dealt with, the trauma associated with stillbirth can manifest as a personality disorder or a substance use disorder.

Treatment considerations

The complex nature of the stillbirth experience often leaves counselors feeling lost regarding the potential direction for treatment. Many interventions used in treating grief are applicable with these clients, and other interventions typically used to treat depression and anxiety can also be used.

For example, let’s say that a counselor has a new client beginning services six months after her first child was stillborn. She was referred by her primary care doctor when she made an appointment with the doctor to obtain medication. She is married with no living children, comes from a large family, and attends a nondenominational church regularly. The client reports that she had to quit her job because she was unable to focus and would cry throughout the day. The client discloses that she had a stillborn daughter named Sarah. A funeral and burial were held, but the client says she is unable to “move on.”

The client’s faith and large family can serve as protective factors because they provide her with a large support system. At the same time, they can also be risk factors by triggering the client and reminding her of her loss. One option is to explore with the client whether she has any frustrations with her support system or any negative beliefs and thoughts about herself when around her support system. The client might reply that she wants to avoid being around babies and small children at family gatherings and church services. The counselor shouldn’t then turn the focus to helping the client find ways to cope with being around babies and children because this might send a message of “get over it” to the client. Instead, the counselor could explore the client’s feelings of unjustness and hurt, both providing validation and normalizing how she feels. The counselor would then allow the client to decide on the small steps she wants to take.

A significant amount of ambiguity accompanies the experience of stillbirth. Some clients are comforted by finding meaning in their loss, while others are not. The counselor can explore this with the client and should be aware that the client’s feelings may change back and forth as time passes. If the client cannot attribute any meaning to her loss or does not find comfort in the meaning, the counselor should validate her feelings of unfairness, hurt and anger and empower her to create her own meaning. For example, how can the client use this meaningless loss for good in the future?

It is often helpful to encourage the use of rituals with clients. This particular client named her baby and also had a funeral and burial for her. The counselor could explore ways the client might use other rituals as a means of keeping her daughter a part of her life. For example, she could hang pictures of her daughter in her home, keep a photo of her daughter in her car, visit the cemetery regularly, have an object such as a candle or decoration that represents the daughter during holidays, and so on.

The counselor could also introduce the client to online resources and supports. This may provide a sense of normalization to the client and counteract her feelings of being isolated in her pain. It may also provide a network that can offer creative ideas for rituals.

There are many ways to approach counseling with these clients, but there are also things to avoid. For instance, counselors should avoid bringing in their own beliefs and expectations for these clients (just as with any clients). These mothers should not feel rushed or be made to feel guilty for not getting “better” sooner. Counselors should avoid using the common comfort terms listed earlier. Counselors must also keep in mind that the therapeutic relationship is more important than any particular technique, and they should allow these clients to be actively engaged in deciding what their sessions are like.

Every mother’s experience of stillbirth is different. The mother’s family, religious beliefs and culture all influence her response to the stillbirth. Additionally, her experience is influenced by the protocol of the medical facilities where she delivered and the attitudes of the health care providers involved. Counselors should address all of these factors in session to ensure that mothers are being treated appropriately for their individual experiences. Our society tends to “hush” these mothers and their experiences because stillbirth is so uncomfortable to address. However, these mothers need to be heard, understood and validated as being mothers, even if they have no other living children. After all, born still is still born.

 

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Samantha Rouse is a licensed professional clinical counselor working for Hosparus Health in central Kentucky. She is a fourth-year doctoral student at Lindsey Wilson College doing research on motherhood and stillbirth. Contact her at samantha.rouse@lindsey.edu.

 

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