{"id":161416,"date":"2022-09-26T01:00:00","date_gmt":"2022-09-26T05:00:00","guid":{"rendered":"https:\/\/ifamnews.com\/?p=161416"},"modified":"2022-09-21T13:44:18","modified_gmt":"2022-09-21T17:44:18","slug":"los-ni-os-con-s-ndrome-de-down-m-s-protegidos-en-eeuu","status":"publish","type":"post","link":"https:\/\/ifamnews.com\/es\/los-ni-os-con-s-ndrome-de-down-m-s-protegidos-en-eeuu","title":{"rendered":"Los ni\u00f1os con s\u00edndrome de Down, m\u00e1s protegidos en EEUU"},"content":{"rendered":"\n

La Academia Americana de Pediatr\u00eda<\/a> (AAP) est\u00e1 actualizando sus directrices sobre c\u00f3mo realizar el diagn\u00f3stico del s\u00edndrome de Down, y esto es un buen cambio.<\/p>\n\n\n\n

La Red de Diagn\u00f3stico del S\u00edndrome de Down<\/a> (DSDN) se puso en marcha en los Estados Unidos de Am\u00e9rica en el D\u00eda Mundial del S\u00edndrome de Down en 2014<\/a> para contribuir a apoyar a las familias de los ni\u00f1os con esta enfermedad con diagn\u00f3stico pre y postnatal.<\/p>\n\n\n\n

El otro aspecto de la misi\u00f3n de la DSDN es intentar mejorar la forma en que la comunidad m\u00e9dica realiza los diagn\u00f3sticos, es decir, haciendo hincapi\u00e9 en la necesidad de transmitir informaci\u00f3n precisa y actualizada. Para ello, la Red tambi\u00e9n ha promovido directrices estadounidenses reconocidas a nivel nacional, un programa de retroalimentaci\u00f3n<\/a> m\u00e9dica y recursos espec\u00edficamente dirigidos a los profesionales de la medicina<\/a>.<\/p>\n\n\n\n

Otra campa\u00f1a<\/a> de DSDN destaca las cartas dirigidas por los padres a los m\u00e9dicos que hicieron los diagn\u00f3sticos, de los cuales s\u00f3lo una peque\u00f1a parte result\u00f3 ser correcta. Por ejemplo, una madre declar\u00f3 que los m\u00e9dicos se hab\u00edan referido a su hija con el pronombre neutro \u00abeso\u00bb, mientras que a otra le dijeron que su hija ser\u00eda un \u00abvegetal\u00bb.<\/p>\n\n\n\n

M\u00e9dicos inoportunos<\/strong><\/h3>\n\n\n\n

Porque no faltan las experiencias negativas. Heather Bradley, miembro de la junta directiva y antigua presidenta de la Red, informa durante una reuni\u00f3n de distrito del Colegio Americano de Obstetras y Ginec\u00f3logos en Wisconsin.<\/p>\n\n\n\n

\u00abUn especialista en medicina materno-fetal de Minnesota dijo que hacer un diagn\u00f3stico de s\u00edndrome de Down es como darle a alguien un \u00abs\u00e1ndwich de mierda\u00bb, escribi\u00f3 Bradley en Facebook<\/a>. \u00abCuando a los padres se les comunica la noticia de que su hijo tiene s\u00edndrome de Down, y las primeras palabras de respuesta que reciben son \u00ablo siento mucho\u00bb o \u00ab\u00bfcu\u00e1ndo debo programar la interrupci\u00f3n?\u00bb,\u00bfqu\u00e9 dice el m\u00e9dico de ese NI\u00d1O? Definitivamente les dice a esos padres que su hijo es un \u00abs\u00e1ndwich de mierda\u00bb.<\/p>\n\n\n\n

Una encuesta revela que s\u00f3lo el 11% de las mujeres afirma haber tenido una experiencia positiva con su m\u00e9dico cuando le diagnosticaron la enfermedad<\/a> mientras que otra encuesta concluye que el 13% de los m\u00e9dicos admite haber enfatizado a prop\u00f3sito los aspectos negativos del s\u00edndrome de Down<\/a> en un intento de empujar a los padres a abortar.<\/p>\n\n\n\n

No es una desgracia, sino una condici\u00f3n que no excluye la felicidad<\/strong><\/h3>\n\n\n\n

Sin embargo, a\u00f1os de duro trabajo y defensa est\u00e1n cambiando las cosas. El nuevo informe cl\u00ednico de la AAP<\/a> actualiza las directrices para los m\u00e9dicos sobre c\u00f3mo comunicar los diagn\u00f3sticos. Las familias deben recibir \u00abcumplidos\u00bb (y no sentirse obligadas a disculparse por ese ni\u00f1o), llamar al ni\u00f1o por su nombre y tener a alguien que les apoye durante la entrevista.<\/p>\n\n\n\n

Tambi\u00e9n se pide a los m\u00e9dicos que dejen de lado los prejuicios personales, que utilicen informaci\u00f3n actualizada y precisa, que empleen un lenguaje centrado en la persona y que pongan a los padres en contacto con grupos de apoyo y recursos disponibles a nivel local. Y tambi\u00e9n para resaltar los aspectos positivos del s\u00edndrome de Down, incluida la felicidad que muchas familias comunican por ser ellos mismos y por la vida que llevan.<\/p>\n\n\n\n

En el caso de los diagn\u00f3sticos prenatales, los m\u00e9dicos ya no tienen que suponer que los padres quieren abortar, ni tienen que concertar citas para abortar sin su permiso, ni siquiera obligar a las madres a abortar.<\/p>\n\n\n\n

Las madres nunca se rindieron<\/strong><\/h3>\n\n\n\n

\u00abDurante a\u00f1os hemos trabajado con los profesionales de la salud para mejorar la experiencia de las familias que se enfrentan al diagn\u00f3stico y hemos compartido las historias de las familias de la Red con los profesionales de la medicina a los que se les ha pedido un enfoque preciso, actualizado e imparcial\u00bb, dice Jenny Di Benedetto, fundadora y directora de Medical Outreach DSDN<\/a>. Es decir, \u00abhemos realizado un cambio real y tangible en la forma de realizar los diagn\u00f3sticos\u00bb. Un \u00e9xito muy importante.<\/p>\n","protected":false},"excerpt":{"rendered":"

Nuevas directrices de la Academia Americana de Pediatr\u00eda: ahora sugerir el aborto a los padres ser\u00e1 menos f\u00e1cil<\/p>\n","protected":false},"author":545,"featured_media":140639,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"give_campaign_id":0,"om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"mc4wp_mailchimp_campaign":[],"jnews-multi-image_gallery":[],"jnews_single_post":{"subtitle":"Nuevas directrices de la Academia Americana de Pediatr\u00eda: ahora sugerir el aborto a los padres ser\u00e1 menos 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