Parents' experiences of having a baby with ambiguous genitalia

被引：16

作者：

Oliveira, Mailme de Souza ^{[3
]}

de Paiva-e-Silva, Roberto Benedito ^{[2
,4
]}

Guerra-Junior, Gil ^{[2
,5
]}

Maciel-Guerra, Andrea Trevas ^{[1
,2
]}

机构：

[1] Univ Estadual Campinas, Dept Med Genet, Fac Med Sci, BR-13083887 Campinas, SP, Brazil

[2] Univ Estadual Campinas, FCM, Interdisciplinary Res Grp Disorders Sex Dev GIEDD, Sao Paulo, Brazil

[3] State Univ Campinas Unicamp, Fac Med Sci FCM, Postgrad Program Child & Adolescent Hlth, Sao Paulo, Brazil

[4] Univ Estadual Campinas, FCM, Dept Human Dev & Rehabil, Sao Paulo, Brazil

[5] Univ Estadual Campinas, FCM, Dept Pediat, Sao Paulo, Brazil

来源：

JOURNAL OF PEDIATRIC ENDOCRINOLOGY & METABOLISM | 2015年 / 28卷 / 7-8期

关键词：

ambiguous genitalia; disorders of sex development; neonatology; parents; SEX DEVELOPMENT; ANDROGEN INSENSITIVITY; DISORDERS; CLASSIFICATION; NARRATIVES; DIAGNOSIS; SURGERIES;

D O I：

10.1515/jpem-2014-0457

中图分类号：

R5 [内科学];

学科分类号：

1002 ; 100201 ;

摘要：

Health professionals must be aware of the impact on parents of the birth of children with ambiguous genitalia. This study aimed to analyze the experiences and perceptions of such parents. Parents of 30 children who were evaluated in a reference center for disorders of sex development (DSD) were interviewed. The questionnaire covered the prenatal period, the moment they were told about the disorder, initial management by health professionals, and problems they experienced. Only two cases were detected during pregnancy. The news was usually given to the mother alone by pediatricians. Most parents kept it secret and avoided exposing the baby to the prejudice of others. Parents of children who were referred without sex assignment usually held a personal belief of their child's sex. Previous assignment was based on clinical examination and/or karyotype. Spreading knowledge about DSD could increase awareness of this issue, thus reducing parents' shock and societal stigma. Training of neonatal care teams is required to avoid assignment before evaluation.

引用

页码：833 / 838

页数：6

共 15 条

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