{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,11,28]],"date-time":"2025-11-28T08:57:05Z","timestamp":1764320225438,"version":"3.46.0"},"reference-count":13,"publisher":"EDP Sciences","license":[{"start":{"date-parts":[[2025,11,28]],"date-time":"2025-11-28T00:00:00Z","timestamp":1764288000000},"content-version":"vor","delay-in-days":27,"URL":"https:\/\/www.edpsciences.org\/en\/authors\/copyright-and-licensing"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Med Sci (Paris)"],"published-print":{"date-parts":[[2025,11]]},"abstract":"<jats:p>L\u2019amyotrophie spinale infantile (ASI) complique la grossesse en raison de l\u2019atteinte motrice et respiratoire associ\u00e9e \u00e0 la maladie. Une enqu\u00eate men\u00e9e par des patientes a recueilli les donn\u00e9es de 30 grossesses men\u00e9es par 22 femmes atteintes d\u2019ASI en France.<\/jats:p>\n                  <jats:p>La capacit\u00e9 vitale (CV) \u00e9tait de 40 % [25-81 %] (m\u00e9diane [quartiles]) de la valeur th\u00e9orique t\u00e9moignant d\u2019un risque respiratoire accru. Cinq m\u00e8res (23 %) ont eu recours \u00e0 la procr\u00e9ation m\u00e9dicalement assist\u00e9e (PMA) pour leur projet de parentalit\u00e9, dont une \u00e0 l\u2019\u00e9tranger et une pour des raisons \u00e9thiques d\u2019acc\u00e8s \u00e0 la PMA (en lien avec la s\u00e9v\u00e9rit\u00e9 de son atteinte respiratoire). Il y a eu des adaptations de dur\u00e9e de ventilation m\u00e9canique pour six grossesses (cinq patientes).<\/jats:p>\n                  <jats:p>La quasi-totalit\u00e9 des accouchements a eu lieu sous c\u00e9sarienne programm\u00e9e. Sept accouchements (23 %) ont eu lieu sans anesth\u00e9sie g\u00e9n\u00e9rale et cinq enfants (23 %) sont n\u00e9s pr\u00e9matur\u00e9ment entre 30 et 35 semaines d\u2019am\u00e9norrh\u00e9e.<\/jats:p>\n                  <jats:p>Une patiente a \u00e9t\u00e9 trach\u00e9otomis\u00e9e de mani\u00e8re br\u00e8ve en post-partum (10 jours, CV \u00e0 18 % de la th\u00e9orique) tandis qu\u2019une autre patiente, non suivie en centre de r\u00e9f\u00e9rence, a gard\u00e9 une trach\u00e9otomie de post-partum pendant neuf mois (CV \u00e0 40 % de la th\u00e9orique). Aucun d\u00e9c\u00e8s maternel ni de trach\u00e9otomie d\u00e9finitive n\u2019ont \u00e9t\u00e9 observ\u00e9s, malgr\u00e9 des profils respiratoires parfois s\u00e9v\u00e8res et certains suivis hors de centres experts. Ces r\u00e9sultats confirment la faisabilit\u00e9 d\u2019une grossesse avec un accompagnement sp\u00e9cialis\u00e9 et appellent \u00e0 mieux former les \u00e9quipes m\u00e9dicales et param\u00e9dicales de maternit\u00e9 aux probl\u00e9matiques de ces patientes, et \u00e0 int\u00e9grer l\u2019expertise de ces derni\u00e8res dans la prise en charge.<\/jats:p>","DOI":"10.1051\/medsci\/2025184","type":"journal-article","created":{"date-parts":[[2025,11,28]],"date-time":"2025-11-28T08:52:58Z","timestamp":1764319978000},"page":"32-37","source":"Crossref","is-referenced-by-count":0,"special_numbering":"Hors s\u00e9rie n\u00b0 2","title":["Grossesse chez les patientes atteintes d\u2019amyotrophie spinale infantile"],"prefix":"10.1051","volume":"41","author":[{"given":"\u00c9milie","family":"Devrainne","sequence":"first","affiliation":[{"name":"Centre de r\u00e9f\u00e9rence des maladies neuromusculaires Nord\/Est\/\u00cele-de-France, CHU de Lille"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"St\u00e9phanie","family":"Fry","sequence":"additional","affiliation":[{"name":"Centre de r\u00e9f\u00e9rence des maladies neuromusculaires Nord\/Est\/\u00cele-de-France, CHU de Lille"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mercedes","family":"Jourdain","sequence":"additional","affiliation":[{"name":"Centre de r\u00e9f\u00e9rence des maladies neuromusculaires Nord\/Est\/\u00cele-de-France, CHU de Lille"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Damien","family":"Subtil","sequence":"additional","affiliation":[{"name":"Centre de r\u00e9f\u00e9rence des maladies neuromusculaires Nord\/Est\/\u00cele-de-France, CHU de Lille"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"C\u00e9line","family":"Tard","sequence":"additional","affiliation":[{"name":"Centre de r\u00e9f\u00e9rence des maladies neuromusculaires Nord\/Est\/\u00cele-de-France, CHU de Lille"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"250","published-online":{"date-parts":[[2025,11,28]]},"reference":[{"key":"R1","unstructured":"Amyotrophie spinale infantile \u2013 PNDS \u2013 HAS\/Filnemus 2020"},{"issue":"2","key":"R2","doi-asserted-by":"crossref","first-page":"153","DOI":"10.1016\/j.ejogrb.2012.02.020","volume":"162","author":"Awater","year":"2012","journal-title":"Eur J Obstet Gynecol Reprod Biol."},{"issue":"1","key":"R3","doi-asserted-by":"crossref","first-page":"26","DOI":"10.1007\/BF00839207","volume":"239","author":"Rudnik-Sch\u00f6neborn","year":"1992","journal-title":"J Neurol."},{"key":"R4","unstructured":"Elsheikh BH, Zhang X, Swoboda KJ, et al. 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Unis pour l\u2019acc\u00e8s \u00e0 la sant\u00e9 des personnes en situation de handicap. 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