The time of choice

Study seeks to understand the reasons why pregnant women decide whether or not to continue their pregnancy in cases of fetal malformation

Technological advances in medicine have improved prenatal exams to allow for increasingly accurate diagnoses and provide a greater connection between parents and baby during pregnancy using ultrasounds whose images are so sharp that they allow you to see every detail of the new being in development, almost like a photograph.

What helps to strengthen bonds, however, can also bring unexpected and difficult news to face, such as the diagnosis of a fetal malformation so serious that the baby is incompatible with life.

In these cases, the woman is faced with an avalanche of emotions. Perplexity, anguish and profound sadness are some of the common feelings. As if the news of the imminent loss of a child were not enough, the pregnant woman also faces the dilemma of having to decide which path to take: to continue the pregnancy and carry out the birth or to terminate it. In Brazil, pregnant women who are diagnosed with severe fetal malformation can request legal termination of the pregnancy through the courts. Only in cases of anencephaly is there legal provision for abortion.

Understanding what leads women to decide whether or not to terminate a pregnancy in these cases was the objective of psychologist Liliane Zapparoli's master's dissertation, defended in November at the School of Medical Sciences (FCM) at Unicamp. The study delves into the emotional aspects and reasons that lead to decision-making in these situations. “The study sought, among other things, to ensure that women were heard and welcomed, regardless of their choices,” says Zapparoli.

Adopting a qualitative approach, the psychologist interviewed 11 pregnant women who were referred to the Comprehensive Women's Health Care Center (Caism) due to suspected severe fetal malformation and who had their diagnosis confirmed at the center. “It was essential to understand not only the final decision, but the entire path taken by these women to reach that decision,” explains Renata Azevedo, a professor in the Department of Psychiatry at FCM and the dissertation advisor.

The study was structured around three fundamental questions: the initial emotional reactions to the diagnosis, the factors that influenced decision-making and the expectations for the postpartum period and the more distant future.

In her research, the psychologist found an almost even split between the choices: six women chose to keep the pregnancy, while five decided to legally terminate it. Regardless of the decision made, all of them expressed intense suffering and reported an emotional “rollercoaster”, marked by feelings of perplexity, anguish, anxiety and guilt.

Private universe

Among women who chose to continue the pregnancy, responsibility for caring for the child and the desire to spend more time with the child were determining factors. For those who chose to terminate the pregnancy, confidence in the medical diagnosis, fear of complications and the desire to alleviate suffering were crucial factors.

The dissertation also noted that other motivations, such as religious beliefs, can lead to different decisions, highlighting how each experience is unique and deeply influenced by social contexts and the personal trajectories of each woman. While one pregnant woman who chose to continue with the pregnancy stated that she had faith in God and that a miracle could occur, another who chose to terminate the pregnancy stated that she had confidence that God supported her decision.

According to Zapparoli, a woman’s grieving process in these cases is minimized and little validated by society. Azevedo corroborates: “Often, this woman is seen as if she were experiencing a lesser mourning, as if she were not a real child.”

Rights in check

The professor emphasizes the importance of legitimizing all choices made by pregnant women at this delicate time. “Some women will choose to terminate the pregnancy, and this must be fully respected. Others will decide to continue to the end and want to see the baby, and this must also be allowed.”

“The study gains even more relevance in the current context of potential legislative setbacks,” says the advisor. At the end of November, the Constitution, Justice and Citizenship Committee (CCJ) of the Chamber of Deputies approved a proposed constitutional amendment (PEC) that prohibits legal abortion. The proposal will still be taken to the plenary of the Chamber of Deputies, where it will undergo two votes. The version approved by the CCJ makes it illegal to terminate a pregnancy in the three cases of abortion currently provided for by law: rape of the victim, anencephaly of the fetus and risk to the woman’s life.

Today, in the case of pregnancies with malformations incompatible with life, the decision to abort must be approved by a judge. In most cases, the justification presented by the medical diagnosis is accepted.

For Azevedo, “the threat of reviewing situations provided for by law may discourage women from exercising rights that are already guaranteed, creating an environment of insecurity for both patients and medical teams.”

In the current legal reality, there are still challenges to be faced by the health system, something the psychologist addresses in her dissertation. According to Zapparoli, it is necessary to adapt services to offer agile and humanized care, respecting women's decisions and providing the necessary psychological support.

One of the most significant challenges concerns the risk of desensitization of health professionals due to constant exposure to serious cases. As Azevedo warned, “for the doctor, this could be the 300th case. For the woman, it is something unique and devastating.” The medical team also faces the challenge of maintaining neutrality regarding their personal beliefs, while dealing with the emotional impact of these situations.

In order to offer adequate care to women who are faced with a shocking diagnosis, the Unified Health System (SUS), the dissertation states, needs to invest in the ongoing training of medical teams, in the acquisition of adequate equipment, in the development of regionalized referral flows and in the implementation of more sensitive and integrated protocols, aiming to mitigate the suffering of the woman and her family and relationship nucleus.