{"id":7660,"date":"2025-02-26T15:59:13","date_gmt":"2025-02-26T14:59:13","guid":{"rendered":"https:\/\/apaiser.org\/newsite\/?p=7660"},"modified":"2025-02-26T15:59:15","modified_gmt":"2025-02-26T14:59:15","slug":"timael-a-une-soeur-jumelle","status":"publish","type":"post","link":"https:\/\/apaiser.org\/newsite\/2025\/02\/26\/timael-a-une-soeur-jumelle\/","title":{"rendered":"Tima\u00ebl a une s\u0153ur jumelle"},"content":{"rendered":"\n

Nous, notre r\u00f4le de grands-parents, \u00e0 distance car 1\u00a0000 kilom\u00e8tres nous s\u00e9parent, a \u00e9t\u00e9 prioritairement de soutenir les parents et de ne pas trop montrer notre stress et notre inqui\u00e9tude. Nous avions nous-m\u00eames \u00e0 dig\u00e9rer et comprendre les informations transmises par t\u00e9l\u00e9phone. (Moi, ancienne soignante, je me posais mille questions\u00a0!!!)<\/p>\n\n\n\n

Le plus dur \u00e0 accepter a \u00e9t\u00e9 l\u2019urgence de l\u2019op\u00e9ration\u00a0: c\u2019est compliqu\u00e9 de se dire que l\u2019on va op\u00e9rer un petit gar\u00e7on de 5 ans plein de vie, bien portant, d\u00e9gourdi, sans aucun probl\u00e8me apparent\u2026 Une op\u00e9ration chirurgicale (surtout au cerveau) n\u2019est jamais anodine, ni d\u00e9nu\u00e9e de risque\u2026<\/p>\n\n\n\n

Nous avons effectu\u00e9 quelques recherches sur Internet et consult\u00e9 le site Apaiser S&C, qui nous a permis, gr\u00e2ce aux informations et \u00e0 la conf\u00e9rence \u00ab\u00a0Chiari Kids\u00a0\u00bb sur YouTube, tr\u00e8s explicite sur la partie enfant, de bien comprendre les tenants et aboutissants et le pourquoi de l\u2019urgence de l\u2019op\u00e9ration. Beaucoup d\u2019appr\u00e9hension avant et pendant l\u2019op\u00e9ration. Mais l\u2019\u00e9quipe m\u00e9dicale et param\u00e9dicale en neurochirurgie a \u00e9t\u00e9 tr\u00e8s pr\u00e9sente et \u00e0 l\u2019\u00e9coute pendant tout le s\u00e9jour.<\/p>\n\n\n\n

Retour dans sa chambre au bout de cinq heures environ, quelques petites douleurs vite dissip\u00e9es. Le lendemain d\u00e9j\u00e0, cicatrice \u00e0 l\u2019air libre, tr\u00e8s propre, tr\u00e8s bien faite (19 agrafes quand m\u00eame\u00a0!!!). Le surlendemain dans l\u2019apr\u00e8s-midi, nous recevons une vid\u00e9o de Tima\u00ebl, debout, jouant dans la salle de jeux du service avec des gestes pr\u00e9cis, seulement quelques difficult\u00e9s \u00e0 tourner la t\u00eate\u2026 Nous sommes \u00e9pat\u00e9s de le voir r\u00e9cup\u00e9rer si vite\u00a0!!!<\/p>\n\n\n

\n
\"\"<\/figure>\n<\/div>\n\n\n

L\u2019IRM de sortie est bonne\u00a0: le chirurgien est tr\u00e8s content de l\u2019op\u00e9ration, mais il reste encore du
liquide. Le temps nous dira la suite\u2026 Il sera surveill\u00e9, apprendra \u00e0 vivre avec cette malformation, aura des IRM de contr\u00f4le, mais il a repris une vie normale en tr\u00e8s peu de temps. II est redevenu le petit gar\u00e7on dynamique d\u2019avant son op\u00e9ration\u00a0!!!<\/p>\n\n\n\n

Tima\u00ebl a une s\u0153ur jumelle, No\u00ebline.<\/p>\n\n\n\n

Les parents avaient \u00e0 c\u0153ur de bien pr\u00e9parer leur fils \u00e0 l\u2019op\u00e9ration tout en prenant soin aussi de sa s\u0153ur, eux aussi \u00e9tant dans l\u2019appr\u00e9hension et l\u2019inqui\u00e9tude. Ils ont beaucoup expliqu\u00e9 gr\u00e2ce, entre autres, aux plaquettes d\u2019information donn\u00e9es lors des consultations. Cependant, nous avons not\u00e9 des \u00e9tapes par lesquelles No\u00ebline est pass\u00e9e. Le d\u00e9part \u00e0 l\u2019h\u00f4pital a eu lieu un dimanche 1 er \u00a0janvier en fin d\u2019apr\u00e8s-midi\u00a0: elle qui, d\u2019habitude, va avec plaisir chez sa tante (s\u0153ur et vraie jumelle de sa maman, sans enfants, donc sa seconde maman\u2026) n\u2019a pas accept\u00e9 la s\u00e9paration, a beaucoup pleur\u00e9. Elle a s\u00fbrement senti le stress sous- jacent de toute la famille et s\u2019est sentie en ins\u00e9curit\u00e9, \u00ab\u00a0exclue\u00a0\u00bb\u00a0!!!<\/p>\n\n\n\n

Pendant le s\u00e9jour \u00e0 l\u2019h\u00f4pital, elle a vite \u00e9t\u00e9 rassur\u00e9e sur l\u2019\u00e9tat de sant\u00e9 de son fr\u00e8re, tr\u00e8s contente de faire des visios avec sa maman et son fr\u00e8re. Son papa a fait en sorte de l\u2019amener tous les matins \u00e0 l\u2019\u00e9cole pour ne pas changer ses habitudes, car il avait \u00e9t\u00e9 d\u00e9cid\u00e9 que la maman resterait toute la semaine \u00e0 Lyon et que le papa ferait des allers-retours entre les deux enfants.<\/p>\n\n\n\n

\u00c0 l\u2019\u00e9cole, o\u00f9 ils sont dans la m\u00eame classe, No\u00ebline a bien expliqu\u00e9 aux copains et copines l\u2019absence de Tima\u00ebl et les pr\u00e9cautions \u00e0 prendre avant son retour \u00e0 l\u2019\u00e9cole, et elle en \u00e9tait tr\u00e8s fi\u00e8re\u00a0!!! Ce \u00e0 quoi les parents ne s\u2019attendaient pas\u00a0: le dimanche suivant, veille de la sortie, les retrouvailles, tr\u00e8s joyeuses, ont eu lieu dans le hall et \u00e0 la caf\u00e9t\u00e9ria de l\u2019h\u00f4pital en pr\u00e9sence de sa tata et de ses grands-parents, mais, au moment du d\u00e9part, elle a voulu monter dans le service avec son papa, sa maman et son fr\u00e8re, voir sa chambre, la salle de jeux, ne serait-ce que cinq minutes, chose impossible, et l\u00e0 elle n\u2019a pas compris et n\u2019a pas accept\u00e9 le refus. Elle s\u2019est sentie compl\u00e8tement exclue de sa cellule familiale, d\u2019autant plus que son papa est remont\u00e9 chercher des affaires. Elle s\u2019est effondr\u00e9e en larmes et en cris.<\/p>\n\n\n\n

Le retour \u00e0 la maison de Tima\u00ebl\u00a0: pendant quelques jours, elle a \u00e9t\u00e9 tr\u00e8s d\u00e9sagr\u00e9able avec sa maman, cherchait \u00e0 attirer son attention, provoquait\u2026 Voulait-elle faire payer \u00e0 sa maman son absence et l\u2019attention plus soutenue aupr\u00e8s de son fr\u00e8re\u00a0? A-t-elle, inconsciemment, d\u00e9charg\u00e9\u00a0le stress et l\u2019ins\u00e9curit\u00e9 ressentis pendant cette p\u00e9riode difficile\u00a0? Heureusement, cela n\u2019a pas dur\u00e9, et toute la famille a repris ses habitudes\u2026<\/p>\n\n\n\n

Merci \u00e0 l\u2019association APAISER S&C d\u2019exister, de mettre ces pathologies rares en lumi\u00e8re, d\u2019actualiser au fur et \u00e0 mesure les nouvelles connaissances et de faire avancer la recherche m\u00e9dicale. Bravo \u00e0 Mado Gilanton et \u00e0 son \u00e9quipe de b\u00e9n\u00e9voles pour leur engagement, leur d\u00e9vouement et leur soutien des malades et de leur famille\u2026<\/p>\n","protected":false},"excerpt":{"rendered":"

La malformation de Chiari de Tima\u00ebl, notre petit-fils, a \u00e9t\u00e9 d\u00e9couverte un peu par hasard sur un scanner pass\u00e9 lors de vacances \u00e0 l\u2019\u00e9tranger, apr\u00e8s une hospitalisation de quarante-huit heures pour vertiges et vomissements d\u2019apparition brutale et rapidement dissip\u00e9s. L\u2019IRM pass\u00e9e \u00e0 l\u2019h\u00f4pital Femme-m\u00e8re-enfant de Lyon, \u00e0 100 kilom\u00e8tres de leur domicile, trois mois plus tard, a permis de confirmer le diagnostic, et \u00ab\u00a0cerise sur le g\u00e2teau\u00a0\u00bb, la\u00a0d\u00e9couverte d\u2019une syringomy\u00e9lie importante. Quel mot barbare et inconnu de nous tous\u00a0!!! Tout s\u2019est encha\u00een\u00e9 en quelques jours\u00a0: rendez-vous avec le neurochirurgien et l\u2019anesth\u00e9siste, date de l\u2019op\u00e9ration fix\u00e9e. Quel stress\u00a0!!! Heureusement, l\u2019\u00e9quipe m\u00e9dicale a \u00e9t\u00e9 au top, a bien expliqu\u00e9 aux parents et a r\u00e9pondu \u00e0 leurs questions.<\/p>\n","protected":false},"author":1,"featured_media":7661,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[36],"tags":[],"class_list":["post-7660","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-temoignages"],"yoast_head":"\nTima\u00ebl a une s\u0153ur jumelle - Apaiser S&C<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/apaiser.org\/newsite\/2025\/02\/26\/timael-a-une-soeur-jumelle\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Tima\u00ebl a une s\u0153ur jumelle - Apaiser S&C\" \/>\n<meta property=\"og:description\" content=\"La malformation de Chiari de Tima\u00ebl, notre petit-fils, a \u00e9t\u00e9 d\u00e9couverte un peu par hasard sur un scanner pass\u00e9 lors de vacances \u00e0 l\u2019\u00e9tranger, apr\u00e8s une hospitalisation de quarante-huit heures pour vertiges et vomissements d\u2019apparition brutale et rapidement dissip\u00e9s. L\u2019IRM pass\u00e9e \u00e0 l\u2019h\u00f4pital Femme-m\u00e8re-enfant de Lyon, \u00e0 100 kilom\u00e8tres de leur domicile, trois mois plus tard, a permis de confirmer le diagnostic, et \u00ab\u00a0cerise sur le g\u00e2teau\u00a0\u00bb, la\u00a0d\u00e9couverte d\u2019une syringomy\u00e9lie importante. Quel mot barbare et inconnu de nous tous\u00a0!!! Tout s\u2019est encha\u00een\u00e9 en quelques jours\u00a0: rendez-vous avec le neurochirurgien et l\u2019anesth\u00e9siste, date de l\u2019op\u00e9ration fix\u00e9e. Quel stress\u00a0!!! Heureusement, l\u2019\u00e9quipe m\u00e9dicale a \u00e9t\u00e9 au top, a bien expliqu\u00e9 aux parents et a r\u00e9pondu \u00e0 leurs questions.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/apaiser.org\/newsite\/2025\/02\/26\/timael-a-une-soeur-jumelle\/\" \/>\n<meta property=\"og:site_name\" content=\"Apaiser S&C\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/AssociationApaiser\/\" \/>\n<meta property=\"article:published_time\" content=\"2025-02-26T14:59:13+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-02-26T14:59:15+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/apaiser.org\/newsite\/wp-content\/uploads\/2025\/02\/temtimael.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"240\" \/>\n\t<meta property=\"og:image:height\" content=\"240\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"fpiriou\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"\u00c9crit par\" \/>\n\t<meta name=\"twitter:data1\" content=\"fpiriou\" \/>\n\t<meta name=\"twitter:label2\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data2\" content=\"5 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/apaiser.org\\\/newsite\\\/2025\\\/02\\\/26\\\/timael-a-une-soeur-jumelle\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/apaiser.org\\\/newsite\\\/2025\\\/02\\\/26\\\/timael-a-une-soeur-jumelle\\\/\"},\"author\":{\"name\":\"fpiriou\",\"@id\":\"https:\\\/\\\/apaiser.org\\\/newsite\\\/#\\\/schema\\\/person\\\/198f94d7e1c44941ed2fbc07a4843ad8\"},\"headline\":\"Tima\u00ebl a une s\u0153ur jumelle\",\"datePublished\":\"2025-02-26T14:59:13+00:00\",\"dateModified\":\"2025-02-26T14:59:15+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/apaiser.org\\\/newsite\\\/2025\\\/02\\\/26\\\/timael-a-une-soeur-jumelle\\\/\"},\"wordCount\":889,\"commentCount\":0,\"publisher\":{\"@id\":\"https:\\\/\\\/apaiser.org\\\/newsite\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/apaiser.org\\\/newsite\\\/2025\\\/02\\\/26\\\/timael-a-une-soeur-jumelle\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/apaiser.org\\\/newsite\\\/wp-content\\\/uploads\\\/2025\\\/02\\\/temtimael.jpg\",\"articleSection\":[\"T\u00e9moignages\"],\"inLanguage\":\"fr-FR\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/apaiser.org\\\/newsite\\\/2025\\\/02\\\/26\\\/timael-a-une-soeur-jumelle\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/apaiser.org\\\/newsite\\\/2025\\\/02\\\/26\\\/timael-a-une-soeur-jumelle\\\/\",\"url\":\"https:\\\/\\\/apaiser.org\\\/newsite\\\/2025\\\/02\\\/26\\\/timael-a-une-soeur-jumelle\\\/\",\"name\":\"Tima\u00ebl a une s\u0153ur jumelle - 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