A self-administered online survey using Qualtrics software (27) was used to gather the experiences from parents experiencing stillbirth or neonatal loss. While the survey asked respondents about several topics related to perinatal loss, only a subset of the data was included in this manuscript. Specifically, to be included in the data analysis for this manuscript, respondents must have fulfilled the inclusion criteria in Table 1.

The content for the survey was developed based on previous literature on stillbirth [e.g. (18)] and neonatal loss [e.g. (6)] and authors’ experiences (the first author has personal experience with stillbirth, the second author has personal experience as a labor and delivery nurse). Survey design and questions were developed according to recommendations from Rea and Parker (28). For example, the question topics flowed in a logical order through the perinatal loss experience and questions asked about one topic at a time. Since parents experiencing stillbirth and neonatal loss often want their baby to be remembered (18), respondents were given the option of writing their baby’s name in a free response question to be used in upcoming survey questions and dissemination of the research findings. Respondents could also choose to not include their baby’s name or not have their baby’s name included in dissemination.

The two authors have different backgrounds related to stillbirth providing insider and outsider perspectives (29). The first author (JK) has the lived experience of stillbirth, providing an insider perspective on interpretation of participant responses. JK also has an outsider perspective as a researcher without any formal training in obstetrics. The second author (JL) has cared for patients and families of stillborn babies as a certified inpatient obstetric nurse, providing an insider perspective on interpretation of health care providers, systems, and processes. JL also has an outsider perspective as a parent who has not experienced a stillbirth.

A university Institutional Review Board (IRB) approved this study. The incentives for this project were funded by a small university grant. Respondents who completed the survey and met the inclusion criteria were eligible to be included in a raffle for one of 120 $5 gift cards or donations to an organization of their choice. Those who wished to be included in the raffle were asked to provide their name and contact information. Identifying information (other than the baby’s name) is known only to the two authors, is currently stored on a password protected computer, and will be deleted at the conclusion of the larger study. There was no formal patient/public involvement in this study; however, the authors have personal and/or professional experience related to stillbirth and parents with experience in stillbirth and/or neonatal loss piloted the survey.

After IRB approval, a selected group of personal contacts who experienced either stillbirth or neonatal loss piloted the survey. The pilot group was asked for any feedback or suggestions for the survey. Minor edits were made to the survey based on this feedback (e.g., wording changes). Recruitment was multi-pronged and included outreach to personal contacts, posting on relevant social media pages, and contacting non-profit organizations supporting bereaved parents. Parents interested in completing the survey accessed the Qualtrics (27) link through fliers, posts, or emails to review the consent information. When clicking the Qualtrics (27) link, parents were immediately shown the consent for the study. If they consented to participate in the study, the survey began. If they declined to consent, the survey ended. Respondents could choose to skip any question unless it was required for inclusion criteria confirmation or data verification. Responses were anonymous, unless parents opted to include their baby’s name or opted to be included in a raffle.

Before data analysis, survey responses were rigorously scrutinized for respondent accuracy through a multi-step process including review of content, survey completion data, demographic information, and open-ended responses. For example, survey completion data such as start date/time, end date/time, and IP address were reviewed for duplicates. Any duplicate responses were reviewed in full and discarded if other questions were identical. The final analysis for this manuscript included 193 respondents who met the inclusion criteria and cleared the data cleaning process.

The majority of our respondents identified as white/Caucasian (79%), heterosexual (94%), females (94%) living in the USA (84%). Most participants had more than one pregnancy and 1–2 pregnancy losses, including a stillbirth which occurred between 1980-2025. The gestational age at first stillbirth ranged from 17-40+ weeks with the largest percentage between 33–40 weeks (57%). See Table 2 for detailed demographic information and pregnancy history of the 193 parent respondents.

Data analysis for this manuscript included two parts. First, demographic questions were analyzed using frequency counts and percentages. Second, the open ended question was analyzed using content analysis. The first and second author reviewed all responses to the question, “What should new loss parents know before the birth of their stillborn baby?” then met to discuss possible clusters. The first and second author generated operational definitions of clusters and applied them to a subset of the data. After revising the clusters and operational definitions, the first and second author coded 36% of the data to obtain inter-rater reliability. Inter-rater reliability was calculated by dividing the number of correct (matching) codes by the total number of codes. Inter-rater reliability for these data was 84% which is considered reliable and not likely to occur by chance (30). Once inter-rater reliability reached at least 80%, the first author coded the remainder of the data. Any discrepancies were discussed by both authors until there was agreement. This content analysis generated five clusters; however, only clustersthat included at least 20% of participants were included in this manuscript.

Approximately 37% of open-ended responses included the cluster of knowing about the birthing process. These were comments related to two main experiences: during birth and after birth. Respondents discussed three main codes related to the birthing process of their stillborn baby: information about the birthing process, the hospital environment, and self-advocacy. The most common code focused on new loss parents needing information about the birthing process for a stillborn baby. Parent participants mentioned that even though their baby no longer had a heartbeat, the labor is similar. For example, parent participants commented “you still have to give birth” (Jayden’s mother) and “you are still going through the process of labor and seeing your precious baby … even if it’s not the way you expected.” (Elliana’s mother). A few respondents normalized the process of understanding what a birthing experience with a stillborn baby would be like. One parent commented, “This seems obvious but it actually hit me that in the midst of all of this sadness, you still have to give birth.” (Lily’s mother).

As part of understanding the birthing process, parent participants also commented on the environment surrounding the delivery of a stillborn baby. Many of these comments were related to the silence that “will be deafening” (Emberly’s mother) or trying to prepare new loss parents for the sounds they would likely hear such as “you will hear other women giving birth, babies crying.” (Eden and Elena’s mother). Respondents also encouraged new loss parents to advocate for themselves and their needs during pregnancy (e.g., “Don’t ignore the signs. If you feel weird and get dismissed, still get checked.” - Asher’s mother) and at the hospital (e.g., “Ask all questions you need, even if you need to ask a few times. That time is a massive blur and can be hard to take things in.” - Meadow’s mother).

There were two codes related to the experience after birth. First, parent participants commented on how a stillborn baby’s appearance changes after birth and how they were not prepared for these changes. Parent participants gave varying levels of detail in warning new loss parents about their baby’s appearance changes after birth, with some participants offering general descriptions (e.g., “your baby may have some changes that have happened to their body since passing away that you will see when they are delivered” - Julian’s mother) while others offering more specific details (e.g., “they will probably have skin peeling, discoloration, bruising and bleeding” - Lincoln’s mother). Many respondents from this code commented they were not prepared for how their baby’s appearance would be different from a living newborn or how their baby’s appearance would change over time. Charlie’s mother said, “Charlie was born with skin slippage. I wasn’t prepared for that.”.

Second, parent respondents highlighted that all of the typical postpartum changes still occur, even without a living baby. These postpartum changes were often discussed in relation to lactation. For example, one parent said, “Your milk will come in after a stillbirth and it will be very painful, both physically and emotionally. No one prepared me for this.” (Mia’s mother).

Approximately 23% of parent participants (44) commented about decisions new loss parents would need to make about their stillborn baby after delivery. Comments related to this cluster were coded as options for memory making and options for post-birth care. Respondents described options for memory making as either hypotheticals for new loss parents to consider or information for healthcare professionals to provide. For example, Madelyn’s mother said, “…think about how you want your birth or time after to be. Do you want to hold him/her? Do you want alone time? Do you still want skin to skin?” Other parent participants encouraged options to be given to the new loss parents so they can use their limited amount of time purposefully. Madison’s mother said, “I feel like they should be told in as gentle a way as possible what to expect and the range of options available to them once their baby is born.” Some parent participants expressed they would have liked more information about what other loss parents had done because they didn’t know what the options were, but they “wish[ed] someone could have talked me through what others do to normalize it all.” (Finn’s mother).

Other comments about decisions new parents would need to make about their stillborn baby were related to post-birth care. First, parent participants commented about deciding how to memorialize their baby such as cremation or burial. Some respondents acknowledged the difficulty in making these decisions such as one parent who commented, “There are things like funeral and burial that you never thought you would have to think about.” Second, parent participants mentioned the need to make medical decisions about their baby such as whether or not to have genetic testing, an autopsy, or placental pathology. One parent commented, “A perinatal autopsy should be encouraged for a cause of death and knowledge for subsequent pregnancies.” (Valentina’s father).

Over half of the participants (54%) advised new loss parents to do at least one memory making activity. In fact, 61% of respondents recommended new loss parents do at least two (range 1-6, average 2) memory making activities with their stillborn baby. The most common pairings were taking photos/videos combined with having physical contact (27), spending time with their baby (24), or doing a parenting activity (21). Some advice to new loss parents was provided as a list of options such as, “Do all the memory-making options (foot molds, lock of hair, etc.).” (Kaia’s mother). Other advice was more detailed to the specific type of memory making activity such as the parent who commented:

Approximately 48% of parent participants (92) offered advice to new loss parents related to the emotions before and after their baby’s birth. Comments in this cluster were coded as emotions in the moment, emotions in the future, and emotions of self-perception. Many of these parent participants (41%) offered advice in more than one code. The most frequent combination was discussing the emotions in the moment and emotions in the future. Respondents commented that in the moment experiencing the birth of your stillborn baby is “one of the hardest things you ever do” and is “one of the worst days of your life,” but that it is also important to “be present” (Vincent’s mother) and “take the time to make memories” (Jules’ mother) because “they are still your child and you are still their parent” (Emma’s mother) and “you will cherish those memories forever.” (Elliana’s mother). For example, Gus’ mother said:

Parent participants often described emotions in the moment at the hospital for new loss parents giving birth to their stillborn baby as overwhelming, painful, and difficult. Several parent participants commented in a variety of ways that the birth of their stillborn baby is “truly a devastating time” (Gabriel’s mother) and is “the absolute worst thing you will ever go through” (Lila’s mother). Some respondents offered encouragement to new loss parents by adding that they can do this, they will survive this, and there is support for them. Respondents also emphasized new loss parents need to “give themselves grace” (Jules’ father) for the decisions they need to make in the hospital. Additionally, parents addressed emotions of self-perception, or feelings new parents may have about themselves, by offering comfort to new loss parents letting them know “they are not alone” (John’s father), and telling them what happened was “not their fault” (Blakelyn’s mother). For example, Malakhi’s mother wrote:

Finally, respondents provided advice and guidance for emotions in the future the new loss parents may feel as time passes since the birth of their stillborn baby. Respondents indicated that “grief takes time” (Destiny’s mother) and the “journey is difficult.” Several parent participants commented on the lasting, but changing nature of grief, highlighting that your baby being stillborn “will change you forever” (Jasper’s mother) and grief is something “you don’t get over … you learn to live with it” (Aubrey’s mother). One reason respondents gave for this lasting grief that changes the parent is that “you are still a mom/dad/parent, even when your baby dies” (Rory’s mother).

While there is peer reviewed literature of parents describing their stillbirth experiences [e.g. (18)], there are few from the perspective of offering parent-to-parent advice. This manuscript builds on Minton et al. (3) and Conroy et al. (31) by focusing on advice parents who experienced the birth of a stillborn baby would give to new loss parents experiencing stillbirth before going to the hospital. Newly bereaved parents who recently found out their baby would be stillborn would likely benefit from guidance from someone who understands their situation, just as other bereaved parent populations have benefited [(e.g., childhood cancer (32)]. Analysis of peer-to-peer support programs for bereaved parents whose children died from childhood cancer noted a variety of different support parents offered to newly bereaved parents (32). Similarly, someone with the lived experience of stillbirth is able to reflect on the most important topics for new loss parents to know and provide resources, strategies, or other practical tips for different stages of the grief journey. Information parent participants in this study felt new loss parents should know were categorized into four main clusters: the birthing process, the decisions about their baby, the memory making activities, and the emotions before and after their baby’s birth.

Statements from parent participants combining the two clusters of memory making activities and emotions before and after their baby’s birth were some of the most frequent clusters throughout the data set. This frequency highlights the importance of making memories at the hospital for the future self, but also validates the difficulty of these actions in the moment. Parents in this study suggested a wide range of memory making activities such as taking photos or videos, doing parenting activities (e.g., bathing), having physical contact (e.g., holding) and many general statements encouraging new parents to make as many memories as they can and spend as much time with their baby as possible. Similarly, best practice guidelines (7, 23, 24) and previous literature (5) encourage memory making activities including spending time with the baby, creating mementos, and seeing or holding the baby (33). Some guidelines recommend that healthcare professionals repeatedly offer a variety of memory-making opportunities to parents (23, 34), but encouragement alone may not be sufficient., It may be important to couple suggestions for memory making activities with normalizing the complex emotions parents reported feeling in this study. Parents have suggested healthcare providers address the emotional component of taking photographs to reduce barriers specifically related to postmortem photos (35), but this may be a helpful strategy for all memory making activities.

Approximately 37% of respondents provided advice related to the birthing process with most advice centering on the birth experience such as going through the typical birthing process, advocating for what the parent needs, and the birthing environment. Many parent participants pointed out that even though your baby died, the birthing process is the same. Anecdotally, the concept of still giving birth after finding out your baby no longer has a heartbeat is a common shock reported by parents who experienced stillbirth describing their experiences in podcasts [e.g. (36, 37)]. A smaller percentage of respondents provided advice for after the birth of the stillborn baby related to the baby’s appearance after birth and postpartum physical changes. his advice seems critically important because several parents also commented they were not informed of physical changes of their baby or the postpartum period during their stillbirth experience. Parents interviewed in Nuzum et al. (25), also briefly mentioned being worried about what their baby may look like. The baby’s changing appearance in moments and hours after birth may be important to communicate to parents.

Nearly a quarter of respondents reflected on the time-sensitive and unexpected decisions that they needed to make about their stillborn baby following delivery. Based on parent respondent comments, new loss parents experience complex emotions they must navigate while also being asked to make difficult decisions related to the immediate and post-mortem care of their stillborn baby, some of which may impact future pregnancies. Informed and shared decision making is a key characteristic of perinatal bereavement care guidelines (14, 23, 24, 34). Healthcare providers can implement shared decision making by giving parents accurate information about the options available to them and supporting the decisions they make that shape their experience (14). As with memory-making activities, newly bereaved parents may not know or may not know how to ask about options surrounding post-birth care of their stillborn baby. If new loss parents are aware of the options from which they can choose, they may feel more agency in the decisions they are making during a difficult time.

Parent-to-parent advice about the emotions before and after the birth of the baby addressed emotions in the moments after the baby is born, emotions related to the parents and emotions in the future after leaving the hospital and beyond. Advice from this cluster reassured new loss parents that their baby being stillborn was not their fault, validated the difficulty of the moment, and emphasized the enduring grief in the future. The most common advice offered by parent participants in this cluster was a combination of emotions in the moment and emotions in the future. Parent participants validated the current pain of the new loss parents after their stillborn baby was born and the lasting pain after leaving the hospital as they process their grief. It is important for newly bereaved parents to understand that their experience is unique and their grieving process is not linear, nor does it have a set timeline (3). Parent reports of their grief experiences align with many grief theories, such as the integrated process model, which also describe grief as multifaceted, interconnected, and individualized (38). One method of coping with grief after stillbirth is to attend support groups and/or connect with peer-to-peer support to find community through a shared experience and validate parenthood (3, 21, 31).

Various national perinatal bereavement care guidelines outline evidence-based and consensus-based recommendations for the care of patients and families experiencing perinatal loss (23, 24, 34). While bereaved parent perspectives may have been considered in their development, these guidelines are specifically directed toward the interdisciplinary healthcare professionals who provide perinatal care. The results from the current study reflect many from previous stillbirth literature and current perinatal bereavement care recommendations; however, they are directed to peers who have the lived experience of stillbirth.

Strengths for this study include the research team, composed of individuals from insider and outsider experiences of stillbirth and healthcare, and the breadth of experiences discussed in the data. The number of respondents (N = 200) provided a range of advice in different areas, varying in length from a phrase to several sentences. While these responses represent a small fraction of the annual stillbirths in the USA and around the world, the data were rich descriptions. Additionally, the sample was fairly homogenous demographically with the majority of respondents identifying as white, heterosexual females living in the USA. Future research should examine the experiences and advice from individuals representing a variety of demographic categories.