The birth of fetuses with malformations from the perspective of caregivers

Kelly Pinheiro Vieira¹, Barbara Christine Dantas Silva de Almeida², Fabiana Caetano de Lima³, Camila Laporte Almeida de Souza⁴, Beatriz Lopes Rezende Nunes⁵, Richely Ritta Menaguali⁶, Bruna de Paula Pereira⁷

^1,3,4,5,6,7Fernandes Figueira Institute/Fiocruz. Rio de Janeiro (RJ), Brazil.

²Brazilian Institute of Rehabillitation Medicine (IBMR). Rio de Janeiro (RJ), Brazil.

Introduction

In 2005, Law No. 11,108 was enacted, guaranteeing pregnant women the right to have a companion of their choice during labor, delivery, and postpartum in all services of the Unified Health System (UHS). ¹ Since then, health services have been required to ensure the presence of this companion, since their inclusion is a protective factor for women, and this support is especially important in pregnancies with fetal risk, such as in cases of congenital malformations.²

Congenital anomalies can be defined as a set of structural or functional changes that occur in utero and can be identified before, during, or after birth. These changes can affect multiple organs and systems of the human body and have multifactorial causes, including genetic, infectious, environmental, and nutritional factors, among others. These factors can act alone or in combination.³

It is estimated that, worldwide, about 3% of live births are diagnosed with some type of congenital anomaly. In Brazil, less than 1% of live births are registered annually with some type of congenital anomaly in the Live Birth Information System (Sistema de Informações sobre Nascidos Vivos - SINASC), which corresponds to approximately 24,000 cases. Specifically in 2021, approximately 30,852 births with congenital anomalies were registered in the country, of which 449 occurred in the municipality of Rio de Janeiro. This number represents approximately 66.4% of all cases registered in the state of Rio de Janeiro in the same period.⁴

In this scenario, some babies, in addition to having congenital malformations, are born prematurely, which further increases their chances of survival. Premature birth can cause several complications, such as lung immaturity, heart dysfunction, and neurological changes, which may require immediate and prolonged intensive care. Research indicates that the combination of prematurity and congenital malformations significantly increases the risk of neonatal mortality and, when not treated properly, can compromise the long-term development of these babies.^5-6

Therefore, promoting the presence of a companion freely chosen by the pregnant woman and training them to actively participate in labor and the birth of fetuses with malformations is fundamental to humanized care, since the presence of this person is associated with a reduction in unnecessary interventions and an increase in good practices during childbirth. ⁷ It is therefore important to prepare the companion to provide the pregnant woman with security, emotional support, peace of mind, and assistance in controlling pain, fear, and insecurities related to congenital malformation and possible adverse events after birth.

In this context, studying perception involves deepening the subject's interpretation of the sensations and experiences experienced at a given moment or as a result of a specific event. Studies on perceptions aim to understand the subject's perspective and investigate the sensitive factors that permeate their experiences, since, based on identification, it is possible to intervene effectively.⁸ Given this, the objective was to describe the perception of companions regarding the birth of fetuses with congenital malformations.

Method

This is a descriptive, qualitative study conducted in a high-risk maternity hospital in the city of Rio de Janeiro (RJ). The study, conducted in accordance with the guidelines recommended by the Consolidated Criteria for Reporting Qualitative Research (COREQ)⁹, included participants over the age of 18, regardless of biological sex, who accompanied women giving birth to fetuses with some type of congenital malformation.

As a strategy for recruiting participants, periodic visits were made to the study setting, where companions who met the inclusion criteria were identified. These companions received initial information about the study objectives and were invited to participate. After expressing interest, the Free and Informed Consent Term (FICT) was presented, and the interview was conducted with the aid of an electronic audio recorder.

Data collection, carried out between March and June 2023, was conducted using a semi-structured interview script consisting of two stages: the first, with questions to characterize the participants, and the second, with the following guiding question: “Tell me what it was like for you to witness the birth of your baby?”

The interviews, with an average duration of 15 minutes, were transcribed and analyzed jointly by the researchers, with the aim of verifying theoretical saturation, which was achieved with the 15th participant. To preserve the anonymity of the participants, the letter “I” was used, followed by the interview number (I1, I2, I3, etc.).

For data analysis, the Thematic or Categorical Analysis technique systematized by Oliveira10 was used, considered, according to Bardin¹¹, as a set of techniques that, through reading and interpreting the content of messages, allows for understanding their meanings. To apply this technique, the following steps were followed: pre-analysis, exploration of the material and treatment of the results, inference, and interpretation.¹¹

After collecting and transcribing the material, a detailed reading of the content was carried out. Next, 196 Record Units (RU) consisting of ideas were identified. These RUs were color-coded, grouped, and quantified. Subsequently, 20 Meaning Units (MU) or themes were defined based on the association of RUs of the same color, allowing the grouping of UM and the formation of three thematic categories.

The research, approved by the Research Ethics Committee (REC) of the Fernandes Figueira Institute/Fiocruz, complied with the ethical aspects provided for in Resolution No. 510/2016 and Resolution No. 466/2012, and was approved under opinion No. 5,788,859. 12-13 At the end of this study, the results were made available to participants via email or WhatsApp, according to the contact method provided, upon expression of interest.

Results

Of the 15 respondents, most were between 32 and 45 years old, male, and identified themselves as partners of pregnant women. In addition to these, some mothers and mothers-in-law also participated in this study. More than half of the participants attended more than six prenatal consultations, the minimum number recommended by the World Health Organization. The main malformations identified were gastroschisis, myelomeningocele, diaphragmatic hernia, acrania, and cardiac malformations. Most babies were born at term.

After the data analysis stages, three categories emerged: “The prenatal experience with a diagnosis of congenital malformation”; “Experiencing the birth of babies with congenital malformations”; and “Impressions of the newborn with congenital malformations.”

Category 1: The prenatal experience with a diagnosis of congenital malformation

It became clear that caring for the family of a baby with a malformation begins with the diagnosis during the prenatal consultation, and at that moment, the participants reported that upon receiving the diagnosis, they felt fear, sadness, anxiety, and denial.

Based on the information received during the consultations, some chose to seek clarification about the malformations through electronic media to prepare themselves in some way, while others preferred to restrict themselves to the guidance provided during prenatal care.

“We always hope that it was a mistake, that it wasn't what it seemed.”. (I3)                    

“It was very difficult. Very difficult, because as I said, we lost our first daughter, you know?” (I8) 

“My world collapsed, our life turned upside down.” (I13) 

I thought that maybe there was no malformation, that it was a mistake, something like that.” (I14) 

“I have seen videos of children who were born this way, and I have also read some articles.” (I3) 

“What is myelomeningocele? I don't know, I haven't looked it up, but my mom has. She said it was a malformation where the spine didn't close, didn't form, and I just didn't bother to find out more about it.” (I4) 

The interviewees reported that their participation in prenatal care helped them feel more prepared and less anxious about the prognosis, appearance, and health care of their baby at birth. As all participants had their appointments at the study site clinic, a referral maternity hospital for babies with fetal malformations, they reported feeling secure due to the training and experience of the local team.

“Because they prepared me, just as they prepared my wife.” (I6) 

“Even without knowing the reality, it gives us a heads up, right?” (I9) 

“Because it was at the hospital that we got support, right? (I13) 

“They explained everything as it could be, the risks, everything [...]. That made me feel more at ease[...].” (I14)

Category 2: Experiencing the birth of babies with congenital malformations         

At birth, feelings of intense happiness and emotion were evident when seeing the baby for the first time. For those accompanying the mother, the malformation did not interfere with their positive perception when the baby presented characteristics considered normal, such as vigorous crying and good vitality.

“It was rewarding, it's an exciting thing that will stay with us for the rest of our lives, it's really good.” (I1) 

It was a pleasant feeling of relief, right? Nothing too serious that would seriously compromise the child. It was beautiful, it was very moving.” (I2) 

“It was beautiful, it was wonderful even though his stomach was out, his intestines hanging out [...].” (I3) 

“It's the best feeling in the world when you see the baby for the first time. I don't even have the words to describe it.” (I8) 

“It was incredible [...] it was wonderful, him all covered in blood like that, and that little cry like that.” [...].” (I13)

The interviewees also reported their own perceptions of the role of companions. Most felt useful, as they encouraged the women in labor, provided support, and actively participated in the labor process. In addition, it was also possible to identify self-perception as a protective and supervisory agent of the procedures performed. On the other hand, some feelings, such as fear, anxiety, and apprehension, were reported, especially when referring to the pain of labor and the clinical condition of the mother and baby.

“For me, it was nice to be there watching her. I stayed by her side, holding her hand and supporting her [...].” (I6) 

“I focused a lot on her. On showing how perfect she is, how strong she is, how wonderful she is, how capable she is[...].” (I10) 

“I tried to make her feel like she was the most important person in the world and that it was a historic birth. I wanted her to feel like she was the most powerful mother.” (I10) 

“Seeing someone in pain is upsetting, especially when it's my wife[...].” (I8) 

“I was tense, worried about both of them, her, who had high blood pressure and was bleeding, and the baby, wondering what would happen after the birth.” (I12) 

“I was anxious and afraid, too. Afraid for my daughter, afraid that something might happen to her and my granddaughter.” (I14)

Concerning the perception of the companion at the birth of fetuses with malformations, the healthcare received permeates their experience and can influence their experiences and perspectives related to the arrival of the baby, since it is a time of great expectations and vulnerability. Given this, some companions felt welcomed and satisfied with the care received, while others reported feeling neglected and disrespected at times during the care, which affected their perception of the birth.

“The staff is very well trained.” (I6)                    

“She was well cared for; it was very important to come here.” (I10) 

“The team was very good. They removed the child very gently, attentively, and carefully. It was very good.” (I12) 

“It’s okay that she was born with this little problem, but at the time I thought they were going to show the baby [...] show me too. But no, everyone came out terrified, putting her in bed and stuff, and we hardly saw the child when she was born.” (I11) 

“There were about 18 people in the room. That should be improved. I don't know if they were there learning, I don't know how it works, but there were three in her surgery, three taking care of the baby, a doctor sitting behind me, and the rest of everyone sitting watching, just causing more commotion.” (I11)  

Category 3: Impressions of the newborn with congenital malformation

Positive feelings were reported regarding the baby's appearance, even when the malformation was visible, since the feelings associated with the child overrode the physical appearance. Thus, participants reported love, acceptance, and receptivity toward the new baby in the family.

“Really? I didn’t even notice the malformation, I didn’t notice it. I just saw that my grandson was fine and that’s good. Crying, you know? It didn’t shock me, it didn’t terrify me, nothing like that.” (I4) 

“But when I saw it, I was calm, I wasn’t scared or anything. I wasn't terrified or anything.” (I14) 

“He could have come with any appearance, I would have loved him the same way, he would have been my son the same way, that's not how I am.” (I8) 

“The only feeling I have for my grandson is love [...]” (I10) 

“Actually, it doesn’t matter, I don’t have to like it, or think it’s beautiful, I have to love him as he is.” (I15)

Due to the information received, the caregivers were aware of the possibility of cure and/or treatment of the congenital malformation and, therefore, their expectations regarding prognosis, growth, and child development were more realistic in accordance with the reality presented. As for malformations without the possibility of cure or treatment, they reported feelings of helplessness, sadness, and fear. In general, feelings related to hope for recovery and improvement in health conditions predominated.

“I hope he will be a normal child, like any other. That he won't have any deformities, any disabilities, nothing. For me, he will be a child like any other who walks, plays, runs, drinks, goes to school, goes to college, and everything. That's how I see my grandson.” (I4) 

“Oh, I hope she develops well, recovers from this situation, and grows up for us to take care of. And she will be very well cared for, with lots of love.” (I12) 

“I hope he survives and goes home with us, because we want to take care of him, even knowing all the difficulties, we want to take care of him.” (I14) 

“I’m afraid to go home, leave him here, and get bad news, you know? I’m afraid of losing him.” (I14)

Discussion

The study results reveal that the perception of the companions was influenced by their participation during prenatal care and that, in general, the diagnosis of malformation took a back seat to the feelings expressed when witnessing the moment of birth. Participants reported feeling happy and excited about the arrival of the new baby in the family, regardless of the newborn's prognosis.

The Ministry of Health defines prenatal care as adequate when there is early identification of risk situations and appropriate interventions are carried out, as well as the coordination of a structured hospital care network, the guarantee of rights in institutions, and the training of professionals based on practices grounded in scientific evidence. Together, these elements constitute the main factors that influence the quality of care and the reduction of causes of maternal and neonatal mortality.¹⁴

The care pathway followed by families during pregnancy with a diagnosis of fetal malformation begins with prenatal care and often involves referral to tertiary care services specializing in fetal medicine and high-risk pregnancy. In these contexts, clinical follow-up is carried out in an integrated and coordinated manner between levels of care, especially between primary care and specialized centers, with a view to providing comprehensive care.

In this context, several studies show that it is essential for the diagnosis of malformation to occur early and at the right time. This gives family members and the support network more time to seek information and assimilate the baby's clinical condition, which helps them cope with the conflicting feelings expected at this stage. Therefore, prenatal care with the recommended consultations and tests is essential, as it enables early diagnosis and anticipates appropriate treatments and procedures.^14-15

Prenatal care provided by a multidisciplinary team is essential to support pregnant women and their companions, as it helps them cope with the various situations arising from the diagnosis of fetal malformation. Educational groups, psychological support, and qualified listening are some of the strategies that promote acceptance, understanding, and welcoming of babies with congenital abnormalities. In addition to emotional and psychological support, the work of professionals trained in high-risk prenatal care is essential to ensure quality and competent care.¹⁵ In this sense, the setting of this study was in line with the recommended guidelines, since women are accompanied by various professionals during pregnancy, such as doctors, nurses, nutritionists, psychologists, and social workers, among others.

Additionally, as a reference in the care of high-risk pregnancies, the study setting offers strategies that seek to promote greater protagonism and autonomy for pregnant women and their families. Among these strategies, we highlight the offer of a course for pregnant women, in which participants have the opportunity to clarify doubts related to pregnancy and childbirth, in addition to building, if they wish, a birth plan. At another time, a visit to the maternity ward is scheduled, allowing pregnant women to get to know the facilities and clarify aspects related to the birth process, especially in cases of fetal malformation diagnosis.

The Ministry of Health recommends that activities aimed at preventing complications and controlling risks should be carried out by all professionals involved in the care of pregnant women with fetal risk. A well-structured care network makes it possible to strengthen surveillance of congenital anomalies, which is an essential public health strategy for supporting decisions and reducing impacts on maternal and child health. With regard to fetal risk, especially in cases of malformation, prenatal consultations are the main source of information on the development of the diagnosed pathology. Thus, the inclusion of the woman's partner and/or support network should be constantly encouraged.

It is known that companions during prenatal care act as important agents of protection for women, as they provide emotional and psychological support, are associated with positive experiences, and contribute to the creation of a safe and comfortable environment during childbirth. Therefore, encouraging their presence from the prenatal period onwards is an important tool, especially in the case of births of fetuses with malformations, since the information received in advance influences expectations and better prepares the family for the birth.^7,16

Based on the reports analyzed, it was observed that the moment of diagnosis represented an experience of intense distress and apprehension for the participants, especially among those with a previous history of pregnancy and/or neonatal loss. Given this context, the gestational period is a fundamental phase for establishing and strengthening the bond between the healthcare team and the family, which is essential for providing comprehensive, humanized, and qualified care.

The literature points out that the discovery of a baby with a congenital malformation constitutes a moment of emotional ambiguity for parents, who experience joy at the arrival of their child, but also fear and suffering, especially for mothers, due to the anxieties associated with body image and its repercussions, depending on the type of malformation.¹⁶

Grief is an expected emotional response to loss or the anticipation of a significant loss. In the context of a prenatal diagnosis of fetal malformation, parents often experience complex grief, marked by the pain of losing their “idealized baby” and the anguish of dealing with uncertainty about their child's future. The traditional model of grief, proposed by Kübler-Ross, describes five stages: denial, anger, bargaining, depression, and acceptance. For parents who receive a diagnosis of fetal malformation, these stages can occur in a complex and often non-linear manner.^17-18

Denial may arise initially, with parents rejecting the reality of the diagnosis, followed by moments of anger, in which frustration with the situation becomes predominant. Bargaining often occurs with parents trying to negotiate or seek alternatives that may favor the child's survival. The depression stage is common, marked by deep sadness and lamentation of the situation, while acceptance can be a gradual process of adapting to the new reality, with the search for strategies to deal with the baby's condition.^17-18

However, these parents' grief may extend beyond birth, especially if the baby survives with complications, creating a constant need for emotional adaptation over time. Psychological support during the prenatal period, as well as postpartum follow-up, is essential to help parents through this process, ensuring continuous emotional care while coping with the situation.

Thus, the moment of delivery is understood as a scenario permeated with possibilities, fears, and anxieties related to the birth process. When the baby or mother experiences complications that may compromise their health, these feelings can intensify and mobilize the family and support network.^19-20 This can be evidenced by the statements cited above, in which some companions reported their concern about the health of the woman and baby.

The choice of a companion proves to be a determining factor in the experience of the birth of a fetus with malformation, directly influencing the emotional experience and coping of the family in the face of the diagnosis. In this study, most of the companions interviewed belong to the pregnant woman's family, predominantly partners, followed by mothers and mothers-in-law.

In this scenario, women attribute special significance to the choice of a companion, since this person is seen as a source of security, physical and emotional support, and trust. The literature indicates that the main choices of women in labor are the child's father, partner, mother, sister, mother-in-law, or close friends, and generally, these companions are part of the women's support network.

The first time the mother and her companion see the baby is a moment of fulfillment of expectations and idealizations, which can be experienced in different ways. In addition to dealing with the physical repercussions, parents and family members still need to face the insecurity related to the need for invasive procedures on the newborn, as well as the fear of death, the future, and the child's development.^19-20

The formation of an emotional bond between family members and babies with congenital malformations is an essential process for the child's emotional and physical development. The presence and continuous support of parents during the hospital stay, even under adverse conditions, play a fundamental role in consolidating the emotional connection, contributing to the baby's adaptation, and facilitating the transition and exercise of parenthood.

The Kangaroo Method, recommended by the Ministry of Health, is a practice that encourages family interaction, allowing parents to actively participate in the care of their baby, especially in neonatal intensive care units. The technique, which involves skin-to-skin contact, not only strengthens the bond but also provides physiological benefits such as regulating body temperature and improving the baby's breathing and heart rate. This approach is even more important in cases of malformations, as continuous and affectionate contact helps the child adapt to necessary medical interventions, in addition to minimizing the emotional impact of the situation on parents.²²

On the other hand, in cases of unfavorable prognoses, such as malformations incompatible with life, two studies highlighted that mothers presented various insecurities related to the baby's development and tended not to create expectations for the future.^15,17 This behavior was also observed in this study among companions, who preferred not to seek external information and were satisfied with the information received during prenatal care.

In general, the companion chosen by the woman is integrated into the care of the baby. Therefore, one study pointed out that family members who share responsibility for care with the mother experience fear of possible unexpected events that may occur at home, which are difficult to resolve or require immediate assistance.

This concern was also evident in this study, highlighting the importance of a support network that is adequately trained in home care and the management of possible complications, depending on the type of malformation presented. This guidance becomes even more relevant in cases with a favorable prognosis and higher life expectancy, ensuring continuity of care and the safety of the newborn at home.

Studies that address the perspective of families of babies with chronic diseases show the challenges in caring for these children in a society structured around paradigms of bodily normativity and ableism. Thus, understanding different social contexts is essential to promoting health actions aimed at the inclusion and development of babies with malformations.^24-25

Communication is therefore an indispensable tool for promoting good practices in childbirth and birth.¹⁹ A study addressing the communication of bad news in health emphasizes that health professionals should also interact with companions, explaining procedures and aspects related to care, recognizing the companion as a fundamental element in the process of childbirth and birth.²⁴

In this context, Brazil has several public policies and programs focused on child care. The Agenda of Commitments for Comprehensive Child Health, developed in 2004, was an important initiative by the Ministry of Health to promote quality child health care. Infant mortality, especially neonatal deaths, was one of the main focuses of the Agenda. The initiative proposed actions aimed at improving prenatal care, qualifying childbirth care, and monitoring newborns, with an emphasis on early detection of health problems and the provision of adequate care in risky situations.

Ordinance No. 1,130, dated August 5, 2015, is an important milestone in child health policy in Brazil, as it establishes the National Policy for Comprehensive Child Health Care (PNAISC). Although it is a broader child health policy, it covers the early identification and management of congenital malformations, with an emphasis on continuous monitoring of the child's health from pregnancy through childhood. The PNAISC recommends that, in cases of fetal malformation, health services should provide specialized support to pregnant women and newborns, ensuring adequate care and early interventions.²⁷

Another relevant strategy is adequate prenatal care, which enables early identification of fetal health problems, offering support to pregnant women and referrals to specialized services when necessary. ¹⁴ In addition, in 2017, the Ministry of Health implemented the QualiNEO Strategy (EQN), in partnership with the Fernandes Figueira Institute/Fiocruz, with the aim of improving neonatal care, offering technical support to maternity wards, and promoting the reduction of neonatal mortality through improved management and care practices.²⁸

These and other policies and programs together seek to ensure the health and well-being of pregnant women and babies with malformations by promoting early diagnosis, appropriate treatment, and psychological and social support for both families and children. Despite the advances, there is still a long and challenging road ahead in the quest for quality care, especially for babies with malformations, since, in practice, there are gaps between the established standards and the reality of the Brazilian health system.^29-30

The experience of accompanying the birth of these babies has been little addressed in recent literature; therefore, it is essential to broaden the discussion on the process of accompanying childbirth and integrate it into newborn care throughout the pregnancy and postpartum period.

The unavailability of interview transcripts for validation by participants was a limitation of the study. However, all interviews were reviewed by a second researcher, ensuring the reliability of the information.

Conclusion

Based on the reports, it was observed that the participants considered prenatal care to be essential preparation for the moment of birth. The information provided by health professionals contributed to the formation of expectations regarding the prognosis and appearance of the newborn. At the moment of birth, the companions felt happy and emotional, regardless of the malformation. The main concerns reported focused on the clinical condition of the newborn and the postpartum woman.

Thus, there is a clear need to expand care not only to pregnant women with high fetal risk, but also to companions, considering the relevance of their presence during the birth process. Guiding them, encouraging their participation, and including them in the care process are actions that can be performed by health professionals, bringing benefits to the entire labor and delivery process, especially when it comes to babies with congenital anomalies.

It is therefore necessary to encourage discussion and contributions from institutions that monitor high-risk pregnancies, with a view to creating flows and protocols that guide and support the practice of healthcare teams throughout the pregnancy and postpartum cycle. Even in the face of various national policies focused on care for women and children, the lack of coordination between policies and primary and specialized care services is one of the main factors leading to negligence and partial implementation of guidelines, especially for newborns with malformations.

Although the UHS has standards and guidelines for comprehensive child health care, including those with disabilities and malformations, the fragmentation of the care network and limitations in the training and qualification of health professionals result in gaps in care. Therefore, the inclusion of a team trained in caring for families with a diagnosis of fetal malformation can contribute to a more positive and welcoming birth experience for women. 

Authors Contributions

Study design: Kelly Pinheiro Vieira e Bruna de Paula Pereira. Data collection: Kelly Pinheiro Vieira. Data analysis and interpretation: Kelly Pinheiro Vieira e Bruna de Paula Pereira. Manuscript writing: Richely Ritta Menaguali, Camila Laporte Almeida de Souza, Beatriz Lopes Rezende Nunes e Kelly Pinheiro Vieira. Critical review of the manuscript: Barbara Christine Dantas Silva de Almeida e Fabiana Caetano de Lima. Approval  of  the  final  version  of  the  text: Bruna de Paula Pereira. 

Conflict of interest

The authors declare no conflict of interest. 

References

1. Brasil. Decreto-lei nº 11.108, de 7 de abril de 2005 [Internet]. Brasília: Ministério da Justiça. 2005 [cited 2022 June 11]. Available from: https://www.planalto.gov.br/ccivil_03/_ato2004-2006/2005/lei/l11108.htm

2. Organização Mundial da Saúde. Anomalias congênitas [Internet]. 2022 [cited 2022 June 14]. Available from: https://www.who.int/es/news-room/fact-sheets/detail/congenital-anomalies

3. Brasil. Ministério da Saúde. Secretaria de Vigilância em Saúde. Departamento de Análise Epidemiológica e Vigilância de Doenças não Transmissíveis. Guia prático: diagnóstico de anomalias congênitas no pré-natal e ao nascimento [Internet]. Brasília: Ministério da Saúde. 2022 [cited 2023 Nov 02]. Available from: http://bvsms.saude.gov.br/bvs/publicacoes/guia_diagnostico_anomalias_congenitas_nasci mento.pdf
4. Brasil. Ministério da Saúde. Sistema de Informações sobre Nascidos Vivos (SINASC). Painel de Monitoramento de Malformações Congênitas, Deformidades e Anomalias Cromossômicas (D180 e Q00-Q99) [Internet]. Brasília: Ministério da Saúde do Brasil. 2023 [cited 2023 July 16]. Available from: https://svs.aids.gov.br/daent/centrais-de-conteudos/paineis-de-monitoramento/natalidade/anomalias-congenitas/

5. Behrman RE, Butler AS. Preterm Birth: Causes, Consequences, and Prevention [Internet]. National Academies Press (US). 2007 [cited 2025 Apr 21]. Available from: https://www-ncbi-nlm-nih-gov.translate.goog/books/NBK11385/?_x_tr_sl=en&_x_tr_tl=pt&_x_tr_hl=pt&_x_tr_pto=tc

6. Gunn-Charlton JK. Impact of Comorbid Prematurity and Congenital Anomalies: A Review [Internet]. Frontiers Physiology. 2022 [cited 2025 Apr 21]. DOI: https://doi.org/10.3389/fphys.2022.880891

7. Alwahaibi N, Al-Julandani R, Al-Kalbani A. The role and effect of companions during childbirth in Oman [Internet]. BMC Pregnancy Childbirth. 2024 [cited 2025 Apr 21];24(1):47. DOI: https://doi.org/10.1186/s12884-024-06256-x

8. Veríssimo DS. Fenomenologia da percepção: fundamentos teóricos e cenários de investigação [Internet]. Psicol Pesq. 2021 [cited 2023 July 16];15(1). Available from: http://pepsic.bvsalud.org/scielo.php?script=sci_arttext&pid=S1982-12472021000100004

9. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups [Internet]. Int J Qual Health Care. 2007 [cited 2025 Jan 1];19(6):349-57. DOI: https://doi.org/10.1093/intqhc/mzm042

10. Oliveira DC. Análise de conteúdo temático-categorial: uma proposta de sistematização. Revista Enfermagem UERJ. 2008 [cited 2025 Apr 21];16(4):569-576. Available from: https://pesquisa.bvsalud.org/portal/resource/pt/lil-512081

11. Bardin L. Análise de Conteúdo. Lisboa: Edições 70; 2009.

12. Brasil. Ministério da Saúde. Conselho Nacional de Saúde. Resolução nº 466, de 12 de dezembro de 2012 [Internet]. 2012 [cited 2022 Sep 05]. Available from: https://bvsms.saude.gov.br/bvs/saudelegis/cns/2013/res0466_12_12_2012.html

13. Brasil. Ministério da Saúde. Conselho Nacional de Saúde. Resolução nº 510, de 07 de abril de 2016 [Internet]. 2016 [cited 2022 Sep 05]. Available from: https://bvsms.saude.gov.br/bvs/saudelegis/cns/2016/res0510_07_04_2016.html

14. Brasil. Ministério da Saúde. Secretaria de Atenção Primária à Saúde. Departamento de Ações Programáticas. Manual de gestação de alto risco [Internet]. Brasília: Ministério da Saúde; 2022 [cited 2022 July 27]. Available from: http://bvsms.saude.gov.br/bvs/publicacoes/manual_gestacao_alto_risco.pdf

15. Medeiros ACR, Vitorino BL de C, Spoladori IC, Maroco JC, Silva VLM da, Salles MJS. Maternal feelings at congenital malformation diagnosis [Internet]. Psicol Estud. 2021 [cited 2022 Aug 06]. Available from: https:// https://www.scielo.br/j/pe/a/VxM4NPY7zL9p4TSBf3JQvHv/?lang=en

16. Azevedo CS, Freire IM, Moura LNF. Family restructuring in the context of baby’s care with Zika Virus Congenital Syndrome [Internet]. Interface. 2021 [cited 2023 July 16]. DOI: https://doi.org/10.1590/interface.190888

17. ​​Freire MMNO, Mendes-Ribeiro J, Gomes IEVM, Rückl SCZ, Nunes MAA, Ribeiro CC, da Silva AG, Rennó Júnior J. Luto perinatal e o impacto na saúde mental parental: uma revisão narrativa [Internet]. Debates em Psiquiatria. 2024 [cited 2023 Jul 16];14:1-21. DOI: https://doi.org/10.25118/2763-9037.2024.v14.1350

18. Kübler-Ross, E. Sobre a morte e o morrer. São Paulo: Editora Quadrante; 1969.

19. Organização Mundial da Saúde. WHO recommendations Intrapartum care for a positive childbirth experience [Internet]. 2018 [cited 2023 Dec 05]. Available from: https://www.who.int/publications/i/item/9789241550215

20. Mazzetto FMC, Mattos TBD, Siqueira FPC, Ferreira MDLDSM. Presence of acompanionfrom the perspective of the woman during labor, delivery,and postpartum [Internet]. Rev Enferm UFPE Online. 2022 [cited 2023 Dec 05]. Available from: https://periodicos.ufpe.br/revistas/revistaenfermagem/article/view/252582/41717

21. Gouveia LB, Palladino LLL. Congenital heart disease and maternal perceptions and feelings [Internet]. Rev Distúrbios da Comun PUC SP. 2023 [cited 2023 Nov 02];35(2). Available from: https://revistas.pucsp.br/index.php/dic/article/view/62141/42830

22. Brasil. Ministério da Saúde. Método canguru: diretrizes para o cuidado [Internet]. 3. ed. Brasília, DF: Ministério da Saúde; 2015 [cited 2025 Feb 06]. Available from: https://bvsms.saude.gov.br/bvs/publicacoes/metodo_canguru_diretrizes_cuidado_revisada.pdf

23. Padua FA, Marinho MFJ. Mães de recém-nascidos com malformação congênita externa: impacto emocional [Internet]. Rev Psicol Saúde. 2021 [cited 2023 Dec 05];13(3). Available from: https://pepsic.bvsalud.org/scielo.php?script=sci_arttext&pid=S2177-093X2021000300013

24. Viana ACG, Alves AMPM, Lopes MEL, Lima DRA, Vasconcelos MF, Batista PSS. Mothers of malformed babies: perception on nurse guidelines [Internet]. Rev Enferm UFPE Online. 2019 [cited 2022 July 25]. Available from: https://periodicos.ufpe.br/revistas/revistaenfermagem/article/view/239825/32819

25. Melo APL, Lyra T, Araújo TVB, Albuquerque MDSV, Valongueiro S, Kuper H, Penn-Kekana L. “Life Is Taking Me Where I Need to Go”: Biographical Disruption and New Arrangements in the Lives of Female Family Carers of Children with Congenital Zika Syndrome in Pernambuco, Brazil [Internet]. Viruses. 2020 [cited 2023 July 16];12(12). Available from: https://pubmed.ncbi.nlm.nih.gov/33302536/

26. Ministério da Saúde. Agenda de compromissos para a saúde integral da criança e redução da mortalidade infantil [Internet]. Brasília, DF: Ministério da Saúde; 2020 [cited 2025 Feb 06]. Available from: https://www.gov.br/saude/pt-br/assuntos/saude-de-a-a-z/s/saude-da-crianca/publicacoes/agenda-de-compromissos-para-a-saude-integral-da-crianca-e-reducao-da-mortalidade-infantil/view

27. Ministério da Saúde. Portaria nº 1.130, de 5 de agosto de 2015. Política Nacional de Atenção Integral à Saúde da Criança (PNAISC) [Internet]. Brasília, DF: Ministério da Saúde; 2015 [cited 2025 Feb 06]. Available from: https://bvsms.saude.gov.br/bvs/saudelegis/gm/2015/prt1130_05_08_2015.html

28. Ministério da Saúde. Fiocruz. Instituto Fernandes Figueira. Estratégia QualiNEO: Qualificação da Assistência ao Recém-Nascido de Risco [Internet]. Brasília: Ministério da Saúde; 2017 [cited 2025 Feb 06]. Available from: https://www.gov.br/saude/pt-br/assuntos/saude-de-a-a-z/s/saude-da-crianca/cuidado-neonatal/qualineo

29. Costa R, Padilha I, Monticelli M, Ramos FRS, Borenstein. Políticas públicas de saúde ao recém-nascido no Brasil: reflexos para a assistência neonatal. [Internet]. 2010 [cited 2025 Feb 06]. Available from: https://docs.bvsalud.org/biblioref/bdenf/2010/bde-25594/bde-25594-121.pdf#:~:text=O%20objetivo%20deste%20estudo%20%C3%A9%20identificar%20as%20principais,refletir%20sobre%20o%20impacto%20destas%2C%20na%20assist%C3%AAncia%20neonatal

30. Ministério da Saúde. Secretaria de Atenção à Saúde. Departamento de Ações Programáticas Estratégicas. Política Nacional de Atenção Integral à Saúde da Criança: orientações para implementação/Ministério da Saúde [Internet]. Secretaria de Atenção à Saúde. Departamento de Ações Programáticas Estratégicas. – Brasília: Ministério da Saúde, 2018 [cited 2025 Feb 06]. Available from: https://portaldeboaspraticas.iff.fiocruz.br/wp-content/uploads/2018/07/Pol%C3%ADtica-Nacional-de-Aten%C3%A7%C3%A3o-Integral-%C3%A0-Sa%C3%BAde-da-Crian%C3%A7a-PNAISC-Vers%C3%A3o-Eletr%C3%B4nica.pdf

Corresponding Author

Name: Kelly Pinheiro Vieira

E-mail: kellypinheirov@gmail.com

© The Author(s) 2025. This work is licensed under Creative Commons Attribution 4.0 International. License text for use: https://creativecommons.org/licenses/by/4.0/