Rodin\u00e1m s t\u011b\u017ece nemocn\u00fdmi d\u011btmi pom\u00e1haj\u00ed u\u017e dv\u011b pracovi\u0161t\u011b Centra prov\u00e1zen\u00ed (CP). Po \u00fasp\u011b\u0161n\u00e9m rozjezdu projektu v pra\u017esk\u00e9 V\u0161eobecn\u00e9 fakultn\u00ed nemocnici (VFN), otev\u0159elo centrum loni v listopadu novou pobo\u010dku tak\u00e9 v D\u011btsk\u00e9 nemocnici p\u0159i Fakultn\u00ed nemocnici Brno. Centrum prov\u00e1zen\u00ed je i tady nabl\u00edzku rodi\u010d\u016fm, kte\u0159\u00ed si od l\u00e9ka\u0159\u016f vyslechnou z\u00e1va\u017enou diagn\u00f3zu sv\u00e9ho d\u00edt\u011bte.
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\nJe\u0161t\u011b p\u0159ed dv\u011bma lety takov\u00e1 slu\u017eba v \u010cesk\u00e9 republice neexistovala. Vznikla d\u00edky Nadaci Sirius a projektu Podpora prov\u00e1zen\u00ed rodin d\u011bt\u00ed se vz\u00e1cn\u00fdm onemocn\u011bn\u00edm, kter\u00fd podpo\u0159ily Norsk\u00e9 fondy.<\/p>\n
Za vznikem Centra prov\u00e1zen\u00ed stoj\u00ed Spole\u010dnost pro mukopolysacharidosu, kter\u00e1 u\u017e t\u00e9m\u011b\u0159 \u010dtvrt stolet\u00ed pom\u00e1h\u00e1 rodin\u00e1m d\u011bt\u00ed trp\u00edc\u00edch jednou z nejt\u011b\u017e\u0161\u00edch d\u011bdi\u010dn\u00fdch poruch metabolismu \u2013 mukoplysacharid\u00f3zou. \u201ePo dvou letech \u010dinnosti Centra prov\u00e1zen\u00ed m\u016f\u017eeme \u0159\u00edct, \u017ee slu\u017eba je st\u00e1le ojedin\u011bl\u00e1. Je bl\u00edzk\u00e1 slu\u017eb\u011b, kterou zn\u00e1me pod n\u00e1zvem ran\u00e1 p\u00e9\u010de, ov\u0161em odli\u0161uje se od n\u00ed t\u00edm, \u017ee p\u016fsob\u00ed v r\u00e1mci nemocnice a m\u016f\u017ee tak b\u00fdt rodi\u010d\u016fm nabl\u00edzku u\u017e od sd\u011blen\u00ed diagn\u00f3zy,\u201c uvedl Jan Michal\u00edk, p\u0159edseda Spole\u010dnosti pro MPS a tak\u00e9 profesor z \u00dastavu speci\u00e1ln\u011bpedagogick\u00fdch studi\u00ed Pedagogick\u00e9 fakulty Univerzity Palack\u00e9ho v Olomouci. Srovnateln\u00fd model podpory podle n\u011bj v \u010cesk\u00e9 republice ani v nejbli\u017e\u0161\u00edch okoln\u00edch zem\u00edch nen\u00ed. Nal\u00e9zt se d\u00e1 nap\u0159\u00edklad na n\u011bkter\u00fdch klinik\u00e1ch ve Velk\u00e9 Brit\u00e1nii.<\/p>\n
Vyu\u017e\u00edt Centra prov\u00e1zen\u00ed mohou nejen rodi\u010de d\u011bt\u00ed se vz\u00e1cn\u00fdm onemocn\u011bn\u00edm, ale tak\u00e9 d\u011bt\u00ed narozen\u00fdch p\u0159ed\u010dasn\u011b nebo s velmi n\u00edzkou porodn\u00ed hmotnost\u00ed. \u201eRodi\u010de se n\u00e1s mohou zeptat na v\u0161echno, i na v\u011bci, kter\u00e9 jim p\u0159ipadaj\u00ed hloup\u00e9, zbyte\u010dn\u00e9. Mohou mluvit, k\u0159i\u010det, plakat a klidn\u011b se i sm\u00e1t nebo nad\u00e1vat. P\u0159itom se u toho v\u0161eho mohou c\u00edtit alespo\u0148 trochu v bezpe\u010d\u00ed. Postupem \u010dasu spole\u010dn\u011b hled\u00e1me cestu pro jejich dal\u0161\u00ed \u017eivot \u2013 u\u017e jako pe\u010duj\u00edc\u00edch osob,\u201c \u0159ekla vedouc\u00ed poradensk\u00e1 pracovnice Centra prov\u00e1zen\u00ed Petra Tomalov\u00e1.<\/p>\n
V Praze s\u00eddl\u00ed Centrum prov\u00e1zen\u00ed od roku 2015 na Klinice d\u011btsk\u00e9ho a dorostov\u00e9ho l\u00e9ka\u0159stv\u00ed VFN, v Brn\u011b ho rodi\u010de najdou v budov\u011b D\u011btsk\u00e9 nemocnice na ulici \u010cernopoln\u00ed 9, a to v suter\u00e9nu pavilonu G. \u201eNej\u010dast\u011bji se na m\u011b obracej\u00ed rodi\u010de d\u011bt\u00ed, kter\u00fdm l\u00e9ka\u0159i nov\u011b stanovili z\u00e1va\u017enou zdravotn\u00ed diagn\u00f3zu. Jejich situace v dan\u00e9 chv\u00edli je velmi obt\u00ed\u017en\u00e1. Jsou siln\u011b psychicky zasa\u017eeni, pot\u0159ebuj\u00ed podporu, a p\u0159itom mus\u00ed \u201efungovat\u201c a pe\u010dovat o sv\u00e9 d\u00edt\u011b. P\u0159ekvapuje m\u011b, jak vysok\u00fd po\u010det rodi\u010d\u016f, kte\u0159\u00ed se do stejn\u00e9 situace dostali u\u017e v minulosti, rovn\u011b\u017e vyhled\u00e1v\u00e1 na\u0161i podporu. Ukazuje se, \u017ee v minulosti takov\u00e1 slu\u017eba chyb\u011bla,\u201c popsala pracovnice brn\u011bnsk\u00e9ho Centra prov\u00e1zen\u00ed Ivana Rygalov\u00e1. V D\u011btsk\u00e9 nemocnici je centrum k dispozici t\u0159ikr\u00e1t t\u00fddn\u011b, v\u017edy od pond\u011bl\u00ed do st\u0159edy od 9 do 14 hodin, v p\u0159\u00edpad\u011b pot\u0159eby maj\u00ed ale rodi\u010de mo\u017enost domluvit si individu\u00e1ln\u00ed konzultaci i mimo otev\u00edrac\u00ed dobu.<\/p>\n
O vznik Centra prov\u00e1zen\u00ed ve Fakultn\u00ed nemocnici Brno se zaslou\u017eily Hana O\u0161lej\u0161kov\u00e1, p\u0159ednostka Kliniky d\u011btsk\u00e9 neurologie, a prim\u00e1\u0159ka Odd\u011blen\u00ed l\u00e9ka\u0159sk\u00e9 genetiky Renata Gaillyov\u00e1, a to za podpory n\u00e1m\u011bstka \u0159editele FN Brno Franti\u0161ka Jimramovsk\u00e9ho, prim\u00e1\u0159e Pediatrick\u00e9 kliniky.<\/p>\n
\u201eSlu\u017eba, jakou nab\u00edz\u00ed Centrum prov\u00e1zen\u00ed, je jednozna\u010dn\u011b pot\u0159ebn\u00e1 z\u00e1le\u017eitost, kter\u00e1 pom\u016f\u017ee rodin\u00e1m. I kdy\u017e my, l\u00e9ka\u0159i, se rodi\u010d\u016fm p\u0159i sd\u011blen\u00ed z\u00e1va\u017en\u00e9 diagn\u00f3zy jejich d\u011bt\u00ed v\u011bnujeme hodn\u011b, v\u0161e s nimi dlouho a podrobn\u011b prob\u00edr\u00e1me, oni pot\u0159ebuj\u00ed v\u00edc. Cht\u011bj\u00ed o tom mluvit opakovan\u011b, a to nejen z l\u00e9ka\u0159sk\u00e9ho, ale i lidsk\u00e9ho a soci\u00e1ln\u00edho pohledu,\u201c mysl\u00ed si p\u0159ednostka Kliniky d\u011btsk\u00e9 neurologie Hana O\u0161lej\u0161kov\u00e1. L\u00e9ka\u0159i na neurologick\u00e9 klinice v D\u011btsk\u00e9 nemocnici v Brn\u011b sd\u011bluj\u00ed rodi\u010d\u016fm smutn\u00e9 zpr\u00e1vy zhruba dvakr\u00e1t a\u017e t\u0159ikr\u00e1t do m\u011bs\u00edce. Podle Hany O\u0161lej\u0161kov\u00e9 je prosp\u011b\u0161n\u00e9, \u017ee v Centru prov\u00e1zen\u00ed se pak mohou obr\u00e1tit na lidi, kte\u0159\u00ed nejsou l\u00e9ka\u0159i. V\u0161ichni pracovn\u00edci jsou speci\u00e1ln\u00ed pedagogov\u00e9, kte\u0159\u00ed maj\u00ed zku\u0161enosti s krizovou intervenc\u00ed.<\/p>\n
Za dobu sv\u00e9ho p\u016fsoben\u00ed pomohlo Centrum prov\u00e1zen\u00ed u\u017e \u0159ad\u011b rodi\u010d\u016f. Byla mezi nimi nap\u0159\u00edklad i Martina T\u00e1borsk\u00e1, jej\u00edmu\u017e synovi l\u00e9ka\u0159i p\u00e1r dn\u016f po p\u0159ed\u010dasn\u00e9m porodu diagnostikovali vz\u00e1cnou nemoc \u2013 Wolf-Hirschhorn\u016fv syndrom. \u201ePomoc z Centra prov\u00e1zen\u00ed p\u0159i\u0161la u\u017e v dob\u011b, kdy jsem je\u0161t\u011b le\u017eela po c\u00edsa\u0159sk\u00e9m \u0159ezu na jednotce intenzivn\u00ed p\u00e9\u010de,\u201c popsala T\u00e1borsk\u00e1. Pracovnice centra byly zpo\u010d\u00e1tku k dispozici, aby se maminka mohla sv\u011b\u0159it se sv\u00fdmi obavami. Pozd\u011bji j\u00ed a man\u017eelovi vysv\u011btlily mo\u017enosti finan\u010dn\u00ed podpory, jak uzp\u016fsobit dom\u00e1c\u00ed prost\u0159ed\u00ed a taky sehnat v\u0161echno vybaven\u00ed k tomu, aby se rodi\u010de mohli o syna starat doma. \u201eNa za\u010d\u00e1tku si \u010dlov\u011bk ani neuv\u011bdom\u00ed, jak moc pracovnice Centra prov\u00e1zen\u00ed pot\u0159ebuje, kolik klidu mu p\u0159inesou a o kolik se usnadn\u00ed \u0159e\u0161en\u00ed praktick\u00fdch soci\u00e1ln\u00edch probl\u00e9m\u016f. Od prvn\u00ed chv\u00edle n\u00e1m d\u00e1valy najevo, \u017ee nejsme sami a nic nen\u00ed ne\u0159e\u0161iteln\u00e9,\u201c dodala maminka.<\/p>\n
V\u00edce o Centru Prov\u00e1zen\u00ed na http:\/\/centrumprovazeni.cz<\/p>\n
Martina Vyslou\u017eilov\u00e1
\nTiskov\u00e1 zpr\u00e1va<\/p>\n","protected":false},"excerpt":{"rendered":"
Rodin\u00e1m s t\u011b\u017ece nemocn\u00fdmi d\u011btmi pom\u00e1haj\u00ed u\u017e dv\u011b pracovi\u0161t\u011b Centra prov\u00e1zen\u00ed (CP). Po \u00fasp\u011b\u0161n\u00e9m rozjezdu projektu v pra\u017esk\u00e9 V\u0161eobecn\u00e9 fakultn\u00ed nemocnici (VFN), otev\u0159elo centrum loni […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":18187,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11,9],"tags":[],"class_list":["post-27385","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zdravi","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/27385","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=27385"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/27385\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/18187"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=27385"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=27385"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=27385"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}