In total, 1714 women who had experienced a stillbirth >3 weeks prior to enrollment completed the survey. Median duration of time since the stillbirth was 19.0 months (0.75-570.0 months; Fig. 1a). Demographics of the sample, including the participant’s country of residence, are shown in Table 1. The median age of women at the time of stillbirth was 30.0 years (18–47 years). The majority (98.6 %) of respondents were from high-income countries with 1.4 % coming from 15 different low or middle-income countries. The median gestation at the time of the stillbirth was 37 weeks (range 28–42 weeks; Fig. 1b), and 50.5 % of the babies were male.
Maternal perception of fetal movements (FM)
Participants’ response to the question “Once you were aware of your baby’s usual pattern of movements was there any time that your baby’s movements were unusual?” is shown in Table 2. While 28.0 % reported “no change in fetal movements”, 30.5 % reported significantly less fetal movement and 8.5 % reported significantly more movement.
In total, 1,077 participants reported what they did in response to the change in their baby’s movement. Table 3 illustrates the behaviour of women in response to a decrease or an increase in perception of fetal movements. It is noteworthy that significantly more women who reported increased movements, compared to those who reported reduced movements, did not worry about it (13.8 % vs. 6.4 %, p = 0.001) and fewer (60.7 % vs. 76.1 %, p < 0.001) sought professional advice from a healthcare provider. Furthermore, fewer women who reported increased movements, compared to those who reported reduced movements, were either admitted or had some type of monitoring (22.5 % vs. 32.6 %, p = 0.002).
Of note, 146 (8.5 %) participants reported significantly increased fetal movements but this figure doesn’t capture the true frequency, as some women reported there was reduced movements, but commented that there was a period of increased movements which occurred prior to death. The increase was frequently described as much more “active” or “aggressive” than usual e.g.:
“only decreased the week before birth. The day before he died he was especially busy and moving like crazy”
“overall movement was the same except for the last 24 hours with a big spike in movement during the day and then nothing by evening”
“he moved almost violently”
“moved like crazy then nothing”
“she was a little more active in the last two weeks and her pattern was slightly off. Not enough that I was concerned. I thought it was a healthy sign”
“The week before my baby passed, I recall she was VERY active one night when I was trying to fall asleep, so much that I actually got up out of bed for a while because her movements were keeping me awake”
Of the four major countries represented in the data (United States, United Kingdom, Australia, and Canada), the reported frequency of unusual fetal movements was remarkably similar. Maternal response to the change in fetal movement was also similar for the United States, United Kingdom, and Australia while Canadians were less likely to seek professional advice about unusual movements (39.2 % compared to 50.6 %, 55.4 %, and 55.9 % for the United States, United Kingdom, and Australia respectively, p = 0.005).
Gut instinct that something was wrong
Overall, 1,650 participants responded to the question “During this pregnancy, did you ever have a "gut instinct" that something was wrong?” (3.7 % did not respond). In total, 1,122 (65.5 %) responded yes to this question. Of these, 521 (46.4 %) were multiparous and 601 (53.6 %) were nulliparous. A gut instinct that something was wrong was reported by 73.4 % of women who had a stillbirth in the 6 months prior to completion of the survey. This proportion then significantly decreased to 63.6 % at 6–11.9 months post-stillbirth (p = 0.002) and remained remarkably stable thereafter (63.1 % at 12–17.9 months, 61.7 % at 18–23.9 months, and 63.6 % at 24 months and longer). Participants were given an opportunity to provide further comment on this response. Recollections included reports of this gut instinct some beginning early in the pregnancy, as these representative participant quotes attest:
“I can't explain, remember telling my partner that I had a feeling that something was going to go wrong”.
“I just constantly worried something wasn't right”
“Felt uneasy during entire pregnancy”.
“Two days prior to my son passing, I had a routine OB visit and ultrasound. I was told everything looked great but I begged my doctor to do a C-section that day. I had an overwhelming feeling that I needed to get my son out that day. I was told that I was just being anxious”.
Perception of time of death
We asked participants for their perception of time of death. They were offered the following options: “In the morning 6 am-12noon”, “In the afternoon 12noon-6 pm”, “In the evening 6 pm-10 pm”, “During the night 10 pm-6 am”, “During a day-time nap” and “I’m not sure”. There were 79 missing responses and 401 who answered they were “not sure”. Together these accounted for 28.0 % of participant responses. The responses are shown in Table 4. Notably, of the n = 1,234 women who perceived a window of time in which they believed that their baby died, 55.8 % believed that their baby died during the night (10 pm-6 am).
Investigation of stillbirth and reported cause of death
Overall, 1304 participants (76.1 %) reported that an autopsy was conducted on their baby (See Additional file 1: Table S1). Only n = 637; (37.2 %) had a full autopsy A minority of respondents had no autopsy but only blood testing performed on the mother (n = 24, 1.4 %). Critically, some respondents reported that an autopsy was not performed due to cost and/or the view that the autopsy might not give a definitive answer:
“OB said it wasn't necessary as they usually never find a cause and insurance won't pay for”
“couldn’t afford more testing”
“Asked and signed for but hospital said it just wasn’t done!”
“I was told an autopsy would not provide any answers and would just be an extra expense”
“No, I was told that I would have to pay a minimum of $20,000 out of pocket to have an autopsy done”
“Was told there was no need for a full autopsy because they hardly ever find a cause of death”
Participants were asked two questions regarding the cause of death (COD). Firstly, “What were you told was the cause of your baby’s death?” and secondly, “What do you believe was the cause of your baby’s death?” In response to the first question, 1002 (58.5 %) reported that they were told a COD and 593 (34.6 %) were told that their healthcare provider did not know what caused the death of their baby. With regards to their belief about COD, 1228 (71.6 %) had a belief as to what caused their baby’s death and 272 (15.9 %) did not know (Additional file 2: Table S2). Overall, there was only fair agreement between the COD reported to parents and their beliefs regarding the COD (Kappa = 0.39). The reported causes of death fell into 10 broad categories namely:
Further detail and exploration of each of these categories, with examples, is given below:
Overall, 457 (26.7 %) participants reported that they were told by their care provider that a cord accident (nuchal, true knot, velamentous, body entanglement, or prolapsed cord) was the cause of their baby’s death. While 428 (25.0 %) believed a cord accident was the cause of their baby’s death, only 312 (68.3 %) of the 457 agreed with the healthcare provider that a cord accident had occurred. Thirty-two additional participants included the cord as one of the multiple reasons they listed in what they believed caused their baby’s death. Twenty-three participants who were told by their care provider that the COD was a cord issue believed instead that their baby’s death was unexplained.
Clotting problems (Underlying thrombophilia)
Where participants used words or phrases including the word clots, Factor V Leiden, Methylenetetrahydrofolate Reductase (MTFHR), or anti phospholipid then their baby's COD was categorized as a clotting condition (underlying thrombophilia). Overall, 71 were told that this was the COD but only 32 (45.1 %) participants agreed with their healthcare provider. An additional 30 participants believed that this was the COD having been told something else.
Other placental factors
Responses categorized as "placental factors" (n = 217, 12.7 %) included those who said their healthcare provider cited placental abruption, insufficiency, or a failed placenta. Overall, 129 (7.5 %) women believed that there was a placental factor. Of the 217 who were told by their healthcare provider that the COD was due to placental factors, only 86 (39.6 %) agreed that the placenta was involved, while 31 (14.3 %) believed instead that their care provider played a role.
Only a few (n = 66, 3.9 %) of the participants were told that their baby died from a fetal abnormality. Of these, 37 (56.1 %) agreed with their provider on this issue. An additional eight participants believed their baby died from a fetal anomaly, although that is not what they were told was the COD. Few details are available in the responses regarding whether or not the fetal anomaly was lethal. For example some respondents wrote “heart defect” without indicating the type of defect.
Infection was cited as the COD by the health care provider in 48 (2.8 %) cases and 38 participants reported this as their belief of COD. Only 22 participants (45.8 %) agreed with their healthcare provider that this was the COD. The exact type of infection was not always mentioned although eight stated that they were told the infection was Group B Streptococcus.
There were relatively few who indicated that they were told a medical obstetric reason such as pre-eclampsia, gestational diabetes, cholestasis of pregnancy, or fetal growth restriction as a COD. We merged all of these into just one category because the total sample size was small (n = 62; 3.6 %). While 66 believed that their baby’s COD was related to an obstetric condition, only 20 (32.3 %) agreed with their healthcare provider that their condition was the reason for the death, with 9 (14.5 %) believing instead that the placenta played a role and 11 (17.7 %) believing that their health care provider played a role.
If the participant cited more than one reason as the COD that was reported by their healthcare provider this was coded as a multiple reason. The responses included combinations of infection, and obstetric conditions such as fetal growth restriction, hypertension, gestational diabetes, or hemorrhage (Additional file 3: Table S3).
Care-provider played a role
In one case the healthcare provider reportedly told the parent that they (the care provider) played a role in their baby’s death. However, a number of respondents (n = 138, 8.1 %) indicated that they believed that their care provider played a role. Some expressed this belief quite strongly, such as “medical negligence or incompetence” or indicated that they had legal cases pending. Others were less strong but also compelling e.g. “being sent home the day before his death when I knew something was wrong” and “Not being taken seriously by labour & delivery when I went in for decreased movement.” Interestingly, most of the women who held the belief that their care provider played a role either were told by their care providers that the death was "unknown" (n = 37, 26.8 %), a placental problem was likely (n = 31, 22.5 %), or it was the result of a cord accident (n = 23, 16.7 %).
With respect to unknown COD, 593 (34.6 %) participants indicated this as the COD they had been told by their care-provider while 272 (15.9 %) believed this to be the COD. Overall, 204 (34.4 %) participants were in agreement with their care-provider that the COD was unknown. In total, 86 (14.5 %) of those who were told the reason for their baby’s death was unknown reported their own belief that a cord accident was the COD. Of concern, 37 (6.2 %) of respondents whose COD was reported to them as “unknown” by their care-provider indicated that they felt the care provider had played a role in their baby’s death and 41 (6.9 %) believed that they themselves had played a role.
Responses which indicated that healthcare providers told parents something other than the main categories (n = 29) were: lack of amniotic fluid (n = 4), asphyxia (n = 2), shoulder dystocia (n = 2), stroke (n = 2), uterine rupture (n = 2) and one case of each of the following: fetal myocardial infarction, fetal weak heart, blood in the lungs, hypoxia, maternal fever, Rhesus antibodies, tentorial tear, cephalopelvic disproportion, cerebral haemorrhage, a fall down stairs, liver rupture, meconium aspiration, fibroids, prolonged rupture of membranes, compromised blood flow, macrosomia, and “statistics”.
I played a role
A few (n = 80, 4.7 %) respondents indicated that they believed that their actions, or lack of action, played a role in their baby's death. One mother’s response is given here as it is particularly poignant but quite typical of the kind of responses the participants gave;
“I cannot say. I fear it was my negligence in not running to the doctor when I felt her movements slow down. When her movements slowed down, I noticed and mentioned this to friends but did nothing out of fear of hearing the worst. What caused her movements to slow, I will never know, but I fear she died because I did not respond to her needs.”
In two cases the participant was told by her healthcare provider that she played a role in her baby’s death. These two quotes are included here:
“I was told and I quote “it’s all your fault.””
This women in turn reported that she considered her doctor as playing a role in her baby’s death.
The other said her care provider had told her:
“My body treats pregnancy like cancer and fought off the pregnancy.”
Of the n = 80 participants who believed that they had played a role in their baby's death, they had mainly been told by their care providers that their baby died from unknown reasons (n = 41, 51.3 %), cord accident (n = 11, 13.8 %), or placental involvement (n = 9, 11.3 %).