O que os olhos veem, o coração sente: estudo sobre a detecção de malformação fetal na experiência de gestantes na Bahia.

Abstract

This Thesis discusses the impact of the Fetal Malformation Diagnosis in the pregnant women s experience who use SUS in Bahia, underlying the notions of dia-gnosis and pro-gnosis developed for Shuval and Gross (2008) associated to doctor-patient meeting risk medicine. It highlights the biomedical discourse in the diagnostic setting, the different perceptions of risk and strong commitment of the users when submitted to pre-natal technologies and neonatal surgery interventions, based on the hope that the science advances are able to revert or soften the baby/fetus condition. It is due to the fact that women feel responsible for not having a healthy baby/fetus, but a malformed one, that the prevalence of gender and cultural rules is observed giving maternity a sense of self-sacrifice that leads to full dedication to the children and their raising, as well as social status. The pre-natal space is marked by the absence of discussion about the prognosis of the different fetal malformations and the subsequent search for information made by the pregnant women in the internet, the husband s opinion and the religious belief that serve as a support to cope with the anticipation of the deficiency. Pregnant women believe that it is God s Will, a kind of probation and an unconditional proof of love for a child with medical recognized handicap (that may or may not survive). Most of pregnant, 20 women, who were interviewed prefer, however, have a child with deficiency than suffer its loss. On the other hand, this thesis analyze the way the health system is organized according to the detection of a congenial malformation, pointing to the precarious situation of the basic attention circuit in relation to the qualification of the professionals in charge of this detection and the due conduction to the specialized service. The visualization technology the obstetric ultrasound is the most important tool to detect any maternal/fetal alteration. However, the clarification of the fetal malformation diagnosis is only made in the referential fetal medicine public service in Salvador, Bahia. The lack of a public policy of the Health Secretary that would guide the development of the fetal medicine in Brazil is worth mentioning, because of the different impacts of the health innovation technologies that generate social vulnerabilities and inequalities. It is important to emphasize the need of a revision of the use of the obstetric ultrasound that prevents is abuse or omission in the increasing cases of congenital abnormalities.