The death of a baby during pregnancy, birth or postpartum is a traumatic experience to a woman and her family [1, 2]. However, it may be also a traumatic experience to the attending health care workers [2, 3]. Several factors make this a complex and marginalized issue, putting it at the bottom of the political agenda: stillbirths’ rates are not included in the Millennium Development Goals, nor tracked by the UN, nor in the Global Burden of Disease metrics , making it an invisible issue. Besides that, miscarriage, stillbirth and neonatal death lead to parental bereavement, resulting in a complex and eventually traumatic experience , a challenging issue to health professionals and to the family to cope. According to Parkes  “For most people in the Western world, the death of a child is the most tormenting and painful source of grief”.
Secondly, the belief the death of a child during pregnancy or after birth would be less difficult to deal with compared to the death of an older child is not true . Actually, the main difference between these two situations is that society does not acknowledge perinatal losses; conversely, society minimizes it, makes it invisible and silences the experience parents are going through. This kind of grief is named disenfranchised grief, known as “(…) a loss that is not or cannot be openly acknowledged, publicly mourned, or socially supported” (Doka, 1989) . Therefore, parents do not have their feelings of grief, sorrow, emptiness and helplessness socially validated . Last but not least, parents, families and health care professionals do not expect pregnancy interruption, or a baby´s sudden death, which turns it in a more traumatic and difficult to cope situation .
It is estimated that a total of 2.6 million stillbirths took place globally in 2016 , and the estimates could be even higher considering underreporting of fetal death, and even higher if including perinatal deaths [3, 4]. The numbers by themselves make the issue a global priority. Nevertheless, they are just the tip of the iceberg.
A perinatal death impacts parents’ mental health and may trigger depressive symptoms, anxiety, post-traumatic stress disorders, suicidal ideation, panic and phobias . It has also consequences in the social and economic spheres, with family crises, occupational difficulties and problems regarding high health care costs .
Women who had a stillborn baby may express guilt and question their competence for bearing a healthy baby. Besides, not only the grieving process may last for months and years, but it also impacts subsequent pregnancies [10, 11].
Given the importance of physical and mental health for women who are undergoing this process, health care professionals have to consider their feelings, helping them cope with the guilt and relieve negative emotions . Likewise, the fact that caring for bereaved parents brings additional stress to the health care staff must be taken into consideration . It is difficult for the staff to deal with negative outcomes in maternity wards, especially when there are no specific institutional protocols . To be able to offer a better assistance, the professional also needs comfort , training, debriefing and professional support .
Guidelines and regimentation regarding pregnancy loss, stillbirth or baby death aren´t a new issue. In the UK, Sands (Stillbirth & Neonatal Death Charity)—a charity1 that works with grieving families and health care professionals published a very complete document  about this issue. Canada  and Australia & New Zealand , among other countries, also have their own and specific guidelines and France2 has specific laws. Those documents recognize the importance of late children, and ensures this care has permanent effects .
Until now, Brazil had sparse literature about this subject. Recently, a book based on the Canadian guideline which orients health care providers was published . Research work was also conducted: a study about complicated grief comparing Brazilian and Canadian women who had lost their babies found that Canadians undergo a less complicated bereavement process than Brazilian women, suggesting that professional supporting bereavement groups, which is an incipient culture in Brazil, could had made de difference .
A recent Brazilian study brought to light the unrecognizable pain of fathers that experienced perinatal losses , discussing the male perspective. Another study from the same group highlighted lactation in the context of perinatal loss . The latter is an important issue in Brazil, once pharmacological lactation suppression is usually the only available option offered to women. Preliminary discussion of The Perinatal Bereavement Project led to a publication in a nationwide circulation newspaper including several narratives of obstacles grieving mothers came across while trying to donate breastmilk3. Both the media report and the narratives from the book “Como Lidar: Luto Perinatal”  surfaced women´s understanding that donating breastmilk could help them cope with the loss of their babies.
In the 2000 document “Managing Complications in Pregnancy and Childbirth: A guide for midwives and doctors” (reprinted in 2007), the WHO presented principles to be considered when a baby dies, such as to avoid maternal sedation, to encourage women seeing and holding their babies, to collect babies’ mementos, among others .
In 2019, the action “Why we need to talk about losing a baby” was launched , aiming to turn miscarriage, stillbirth and neonatal death visible worldwide, as well as to depict the need for best practices and skilled professional healthcare. The initiative was grounded on women´s experiences of perinatal losses and epidemiological data, and proposed the end of “the unacceptable stigma and shame women face after baby loss” , claiming for empathy, respect and support during the care for those women. This is the beginning of a very important conversation about supportive guidelines for families experiencing stillbirth and neonatal death.
The development of evidence-based protocols may positively impact the health of parents who underwent perinatal loss. This protocol must be grounded on evidence provided by the hospital and health care professionals, and it must focus on creating memories regarding the late baby. A North American study examined 40 women who had a miscarriage between 12 and 20 weeks, and received support based on mediating protocols . After the interventions, they felt diminished despair and reported feeling cared for and assisted. The findings may probably apply to pregnancy losses regardless of gestational age.
When a baby dies or a pregnancy is lost, parents experience multiple losses, such as the plans they have made for the live baby, and the dreams and expectations they had towards growing a family. Death also alters parents’ previous expectations about parenthood . If we look to parents’ bereavement through the lens of Rando’s theory (1993) , “The Six ‘R’ Processes of Mourning”, we can find in the third process, “recollecting and re-experiencing the deceased and the relationship” huge difficulties for parents, due to the scarce or even absent actual memories of the baby who died, or of the lost pregnancy . With this in mind, collecting memories is a key point within comprehensive perinatal bereavement guidelines.
Additionally, performing farewell rituals and facing grief in a realistic way are key aspects to cope with death: “Seeing and holding a live baby right after the birth is a normal parental response. Seeing and holding a stillborn baby is also a normal response, and there is much evidence showing that it can be a valuable and cherished experience” . A 2015 systematic review analyzed health outcomes associated with parents who could see and hold their stillborn children. Results revealed that allowing families to have physical contact with their children is beneficial, which opposes previous concepts by which health care professionals should discourage such behavior .
Locally, there is evidence in national studies corroborating the importance of having contact with the baby, even after death. Parents mentioned the wish to hold the child close. They also reported that their pain was diminished due to this incomparable and fundamental experience . Another national investigation concludes that rituals that included naming, seeing and touching the baby, as well as having funeral services, contributed to a healthy mourning .
In order for health care professionals to guarantee adequate assistance to bereaved parents, it is necessary that they are emotionally and technically trained and equipped . Dealing with women suffering from the loss of a child can pose an enormous challenge, considering the cultural and personal uniqueness of each one of them [29,30,31,32]. Notably, taking care of the team enables the preservation of the continuity and quality of future care in situations of loss [31, 32].
Do bereavement guidelines designed to assist parents who are experiencing stillbirth or neonatal death in a Brazilian childbirth facility promote supportive care that provides a healthy bereavement experience for the woman and her family?
This investigation presupposes that local institutional protocols developed from bereavement-supportive guidelines may offer better assistance in the perinatal loss scenarios. It is based on the assumption that the physical and emotional care, as well as the moments spent with the baby and the collection of mementos, enhance the chances of a healthy bereavement experience.
The document “Pregnancy loss and the death of a baby: Guidelines for professionals—4th Edition”  published by SANDS was used to outline the conceptual framework for the present study. The authors considered that the main prerequisites for offering supportive care to bereaved parents are time, training and support. Good communication, shared decision and individual care are important elements to provide high quality grieving assistance. These are the grounding aspects for supporting guidelines and, for this reason, are on the top of the conceptual theoretical matrix, according to Fig. 1.
Initially, the first level of the matrix contemplates the work with staff and health care professionals. It involves three elements concerning professional qualification, meeting professionals’ emotional needs (including psychological support) and an effective and efficient staff communication. Considering the Brazilian scenario, where guidelines and orientation are needed, the following tripod is significantly important to outline a starting point for planning a supportive bereavement guideline: (1) prioritize initial capacitation regarding the guidelines and situation management; offer continuous development to both qualified and novice staff members so all are aligned with the care model to be followed; (2) understand that the health care professionals are above all humans and, therefore, subjected to grief, death and bereavement in their professional and private lives. They may also be more affected by a grief situation while assisting patients. Consequently, they need institutional space to address their own emotional needs. With this in mind, the Bereavement Professional is allocated to provide care and sensitive listening without any judgment. This action aims to meet the professional/staff needs; (3) offer good communication, among professionals and among staffs who will also provide the families good communication. This is the core aspect to ensure parents are being given what they need during the bereavement process. Good communication consists of establishing and following protocols with which the whole staff is aligned.
The second level of the matrix is related to the infrastructure of the health care establishment that will provide the family physical and emotional memories of the baby. Some of the infrastructure items consist of the family's individual accommodation, resources to collect memories, a refrigerator to preserve the corpse and a local to keep the memory boxes. The aforementioned items are fundamental and most Brazilian maternity wards need to restructure according to the following: (1) individual accommodation is one of the issues Brazilian grieving parents mention the most. It protects them from curiosity; it prevents them from having to share the grieving moment with other families who are celebrating the arrival of a healthy baby next to them; it also gives them privacy to meet their child moments before sending them to funeral rituals. Even with logistics challenges in Brazilian childbirth facilities, some privacy must be considered and offered; (2) resources to collect mementos inside the maternity ward, such as a camera to take pictures of the baby and the family or material to register the handprints and footprints, and a lock of the baby’s hair, when available. A box to keep the items is important for the process of creating memories and should be offered to the family before hospital discharge; (3) refrigerator to preserve the corpse is one of the least useful items, but it might be essential at some point.
In childbirth facilities where complex cases are assisted, many women need sedation or are unconscious for a period of time (days or even weeks). When the woman is awake, after being unconscious during birth and the first hours or days after childbirth, the impact of the news may be devastating, especially when the baby has already been buried or cremated. In such situations, having the chance to keep the baby so the mother can recover from sedation/unconsciousness may have a positive outcome for her mental health; (4) having a place to keep the memory boxes that were not taken by the family after hospital discharge, is also important. Chances are these families will return the following weeks or months to take the boxes with them once decision may change over time.
Health care attributes are on the third level of the matrix. They highlight the essential aspects of the care given to parents: privacy (previously mentioned); individual care, that adapts assistance to a family’s physical, social and emotional needs. These adjustments are based on beforehand locally developed alignments of care. This is a delicate matter and health care professionals have to observe ethical and non-judgmental values when it comes to the family’s decisions, beliefs and feelings. It is also challenging since the professionals themselves are personally and individually affected. They have their own mechanisms to deal with grief and that has to be considered, as discussed in the previous level of the matrix. Our suggestion to solve this problem is teamwork. Therefore, professionals are supported by the health care establishment and the structured protocols and may follow the pre-established recommendations. Informed and conscious decisions, evidence-based care, pre-established institutional protocols and uniform technical behavior are part of this approach to produce safe assistance and continuous care.
The praxis is described on the fourth level. It highlights the need to decide the birth as the first move. This consists of an issue regarding vaginal birth versus cesarean section, since the Brazilian scenario has worrying numbers of C-sections. In some cases, when the woman’s life is at stake, cesarean sections are actually needed. However, in most stillbirth cases, vaginal births are the safest choice.
The mode of birth is a mother’s decision. Nevertheless, health care professionals should explain the risks and benefits of each option. Women should have the chance to experience labor and vaginal birth. This may help them start grieving, since time, hormonal and physical questions may be addressed. Moreover, when the woman opts for a vaginal birth, she will actively participate in the biological parturition process and she will be able to see and hold the baby, as well as have a farewell moment, since childbirth. Additionally, she will probably have a better physical condition to participate on rituals (funeral, burial ceremonies or cremation) and to get pregnant again sooner, if she wishes. Lastly, C-sections increase risks in future pregnancies and childbirth when compared with vaginal birth. Thus, all of the staff’s efforts should involve providing the best health care, avoiding physical and psychological risks for the mother. As a result, vaginal birth tends to be a better option whenever possible, but sometimes, especially when there is a psychological trauma, a C-section should be considered. In any case, if a C-section is performed, holding the baby is recommended and should be encouraged. In all cases, the staff will organize the baby’s memory box and help with the decision-making process regarding the baby’s corpse. It is also advisable, whenever possible, to have written plans for labor and postpartum and for all decisions related to the baby.
In Brazil, post-mortem examinations are hard to be run. Yet, whenever possible, they should be suggested by health care providers. Finding the cause of death may help the family mourn, even though clearly stating diagnosis is infrequent. Funerals, burial ceremonies or cremations should be postponed so necroscopic examinations may be run. Notably, even when the death occurs before fetal viability (20 weeks and/or 500 g), the family may opt for funerals, according to Brazilian law and the Federal Council of Medicine technical reports ; it is essential that the family have all the information they asked for (e.g., procedures, clinical questions), which will support their decision-making.
The intermediate elements of the matrix transcend the objective aspects described here. They include creating positive memories that are associated with the baby and its death, which is challenging and complex. For this, we recommend personalizing the approach and respecting the woman’s decisions, aiming to lessen anxiety and uncertainties. An institutional protocol that is uniform and well-structured is essential. An open dialogue among all the people involved in the care and emotional support given by the professionals are fundamental points.
The end of the matrix regards the primary objective of this proposal: to offer care that facilitates healthy perinatal bereavement. This may be achieved when all the measures mentioned above are transversally contemplated.