Lived Experience of the Dyad and Their Relationships Following a Fetal Death: A Hermeneutic Phenomenological Study

Subtheme 1: Variations in Grief

This subtheme recognized that, while there is a common lived experience of fetal death among dyad members, there are variations in grief between everyone. Participants described ways in which societal expectations and timing of healing influenced differences in their experiences. Many male participants reported a need to be “strong” or wanting to “fix things” which affected their outward expression of grief. Several female participants shared they felt their husbands experienced that, too.

A male participant reported, “I was trying to be strong, for the kids and her, but I was worried about her. . . I felt I couldn’t let it get me too bad . . . I probably held it in,” another male reported feeling “a little bit of disconnect about how the grief affects us too.”

Female participants recounted how their expressions of grief varied and that nursing advice focused on societal expectations. One participant shared that hospital staff told her husband during the birth that “you need to be the support system for her, and you need to be you know tough.” Another female reflected and shared “I was much more like emotional, and he was more like, like instrumental in like, do, like doing things.”

Subtheme 2: Navigating the Experience

This subtheme described how individual experiences after the fetal death had differences related to the gender roles around the birth. Female participants reported their physical experiences after the birth influenced their grief and included reminders of the baby they lost. One female expressed, “My body thought I had a baby . . . so experiencing my milk coming in. Not only was emotionally difficult but, but physically very, very painful.” Another woman recounted that, “6-8 weeks after was probably the hardest mentally for me, that was like right around the time . . . my period came back.”

For some of the male participants, their experience differed due to lost hope of a relationship with their son. One participant remembered how “it hadn’t gotten to the point where I had even felt him kick . . . But I had that like excitement of [having] a son.” Another recounted that for him, “mourning the loss of like, my son as he was not like, of all the possible things made it, made it an easier process for me.”

While there were individual experiences the dyad had to interpret as they navigated grief, there were several things that because they had each other made things better. Participants shared that their partners were instrumental to the healing. One female participant shared her husband was her “rock through all this. He’s amazing.” Similarly, a male participant recounted that even after experiencing this he “couldn’t imagine going through life with anybody else. [She] truly understands me to the core, more so than she did even as when we set our I do’s.”

Subtheme 3: Perception of the Partner’s Experience

An interesting subtheme that emerged as the participants were interviewed individually was the partner’s perception of the other’s experience. Each participant reflected on what they thought their partner’s experience was which described the dyad response in a unique light. Participants shared they felt the partner was often forgotten by others and that they wished they understood more about the partner’s grief experience. Many participants remembered the imbalance of support and said, “there’s a lot more resources that are given to the mother. Fathers, fathers are very much, um, I wanna say ignored” or “I really do feel sorry for the fathers, because I think the emphasis is always put on the mothers.” In addition, male participants reflected that the physical experiences of pain and reminders of birth that their wives endured were difficult to comprehend. For example, one male recalled that his wife’s experience was “the same experience I had multiplied by X. I don’t know what the X is. But it was a much more horrific version of what I experienced.”

Subtheme 4: For Better or Worse

This subtheme explored the ways the relationship shifted during the period after a fetal death. Dyads described the initial difficulty, then periods of improved communication, and ultimately for many a strengthened relationship. Examples of this were one participant who shared it “hard for us, both when the other didn’t like grieve the same way” or how a different participant’s partner experienced a lot of “anger” which was “not going to bring him back . . . it’s just going to cause problems with us.” One female recalled their relationship strain and shared that their partner “became extremely anxious and extremely depressed” and how they “were fighting a lot.”

After the periods of difficulty, though, there were positive experiences within the relationship. Many dyads reported their communication “improved” and relationships were “strengthened” following the fetal death. One participant shared “We know each other, a little bit better. And like now our relationship is very, very solid.” Another mentioned that he “would say that that probably would have made us stronger.” Despite the difficulty and immense grief, the dyads experienced, a shared experience united partners that one participant reflected “keeps us close together because we forever have that bond of our child.”

Subtheme 1: Reflecting on the Birthing Experience

Dyads described the delicate balance of wanting to spend as much time as possible with their child but knowing at some point they would need to say goodbye and send the baby to the morgue. This brief period included holding and bonding with the infant. This time with the baby was the only time dyads had to establish a relationship with the physical appearance and feeling of their baby. Unfortunately, for many, their time was limited due to the influence of time on their baby’s appearance. Most dyads kept their baby with them between 6 and 24 hours. Once they decided, it was time to say their physical goodbye in the hospital dyads recounted intense emotional experiences. One participant shared it was “by far the most difficult thing that I’ve ever said in my life. Because I didn’t, I even, even with him not being alive, I could not let [him] go.” Another reflected, “I knew what I was getting into that like dead babies don’t like get better over time.” Her husband remembered, “in total, we probably had six or so hours where we were with him. And then you know we let the nurses take him away, and by that point we were just wrecked.”

Subtheme 2: Honoring the Baby’s Memory

This process honored that the infant was a real member of the family to siblings and a child to the parents. One way the relationship with the baby was maintained included using the child’s name. Many participants shared how using their baby’s name or/and “asking questions” about the child made them feel real and valued. An example of this is a participant who appreciated people who spoke of her son and that “even though he wasn’t full term I held him in my arms, and he looked like my husband. He’s very real, to me.” To honor their baby, some dyads did not change the nursery or create new holiday traditions. One participant shared they kept the nursery “pretty close to where it was for almost a year,” whereas another mentioned at Christmas they “have special ornaments we hang high up on the tree for them.” Another participant reflected how on the birthday they often did “something special that day” and have “done a balloon release” to honor their deceased son’s life and maintain a relationship of his memory.

Others discuss how they light a candle, have special objects that remind them of the infant, or got tattoos to maintain a relationship with the infant. Tangible objects to honor the deceased baby were common to maintain a closeness. One male had their son’s ashes in his bedroom dresser and “tap(s) that every day” to feel close to the child. Others recounted how they have jewelry to remember their child. One participant reflected that she and her husband have necklaces they wear daily. Her necklace has “his handprint and his handprints” and her husband “has a necklace that is a dog tag that has [our baby’s] picture on it.” One male described how their wife also “has a necklace with a little bit of the remains in it the heart of the little handprint or footprint.”

Subtheme 1: Positive Connection That Carried us Through

Several participants described positive relationships and interactions with health care providers during the time of the loss. These experiences were described as creating a sense of “trust and appreciation.” Some participants described a connection and relationship with a specific nurse or obstetrical (OB) provider who they perceived as “kind,” “compassionate,” and “amazing.” Often these providers were described as serving as an extra source of comfort and strength at a time when it was most needed. One participant recalled “fondly” the experience he had connecting with one nurse, “we both kind of like locked on to her, this is the person in charge.” Another also described, “We were given the most amazing nurse, ever, she was absolutely fantastic . . . She was just like so empathetic and compassionate from the beginning and that meant a lot me.”

In some cases, the positive relationship with the health care provider preexisted the loss experience. Some described encountering the same nurse who had been present at the birth of an older child, “Yes, there was something. Kind of divine intervention in then in that regard because it definitely helped ground the moment I think it, it allowed us to let our guard down a little more, we were comfortable with the people.” One participant also recalled the team calling her own OB to confirm the bad news that their baby had died, “It wasn’t going to change, but just I think we’re on peace of mind, have like our doctor look.” In these cases, participants described a trust in feeling known by the provider which provided a sense of comfort in their experience.

Caring nurses and other health care providers served as a calm and compassionate guide during a time that was chaotic, overwhelming, and filled with emotion. One female participant recalled, “She just cared about my comfort she gave us a nice amount of space to be alone in grief, but also, I never felt abandoned by her it was just a really beautiful art.” Many dyads described the important role that nurse played in helping to make the most of the limited time available to bond with their child. Several families described nurses encouraging them to take pictures of and with their child. In some cases, participants described not realizing at the time that this is something that would later provide great comfort and shared, “they did take pictures and they put them in a memory box . . . I am very grateful they did.” Another also recounted this appreciation of the nurse encouraging pictures, “that was probably one of the best gifts like that nurse ever could have done for us. I wouldn’t have thought to take pictures, and certainly not of a dead baby, but I am so thankful that she did that for us.”

Subtheme 2: Uncaring Providers and Increased Pain

While positive interactions with caring, compassionate health care providers provided great comfort, participants also recalled receiving care from providers who were uncaring. Some participants described interactions that felt rushed or transactional, while others described individual health care providers as “inappropriate,” “terrible,” and “overbearing.”

Some participants reflected upon challenging relationships with health care providers who both rushed them and appeared detached from the participants’ emotions. Almost immediately after receiving the bad news of the loss of their child, participants were forced to make decisions to guide their care and to plan for the management of their child’s remains. For some, caring providers helped to make these decisions manageable, for others a lack of caring contributed to mistakes, miscommunications, and regrets. This is highlighted by one male’s recount of being forced to quickly fill out paperwork right after finding out that his child had died. “I literally just didn’t know . . . what they were handing me . . . I didn’t care, you know the only thing I cared about was what was happening to [my wife and daughter].” Another male also shared how the care received by doctors and nurses further contributed to the pain of his and his wife’s experience, “yeah, the hospital experience, I understand your doctor is going to be kind of detached . . . But at times it’s not helpful. Like from an emotional standpoint.” One female participant described her experience laboring overnight alone under the care of a nurse who seemed both bothered by and callous to her needs. The nurse was notably absent for most of the night and when the female rang to ask for help, there was the perception of impatience, uncaring, and attitude that contributed to added pain. This participant reflected, “It was just like . . . is this really how you treat people when they’re going through something like this?”

Subtheme 3: Change in Health Care Relationships After Loss

The experience of fetal death continued to impact participants’ relationships with health care providers following the initial hospitalization or procedure. Many participants described a change in the dynamic of their expectations in health care encounters and an added need for sensitive and compassionate care. In many cases, these expectations were influenced heavily by those initial relationships immediately following loss. For those who had a positive experience, they were able to develop future relationships with health care providers with an expectation for caring and compassion. For others, who had negative health care experiences, future encounters were clouded by a lack of trust and a sense of needing to strongly advocate for self.

Numerous participants described the desire to have health care providers “read their chart” prior to interacting with them. Participants described encounters during prenatal visits, ultrasound appointments, and with other providers, where the providers’ lack of knowledge of their loss contributed to inappropriate questions, comments, and ultimately added grief. One female recalled a prenatal appointment for care for a pregnancy after experiencing fetal loss where her provider said “oh, didn’t you just have a baby . . . a slight pause, how’s that going,” and I said, “well not too good cause she’s dead.”

Some participants were able to continue to sustain a positive health care provider relationship following the loss. Participants described staying with an OB practice for subsequent pregnancies or returning to the same hospital for a future delivery. The initial experience increased their trust and deepened the connection in these relationships. As stated by one female, “The OB I’m seeing for this pregnancy, is actually pregnant, that the OB who did surgery for my son. And she’s so compassionate and amazing as well.” Providers who knew the participants well and brought to the relationship an understanding of their loss were better able to manage the ongoing grief and at times anxiety that was brought into future pregnancies.