L\u00e9ka\u0159i man\u017eel\u016fm P\u011bchov\u00fdm ze Zl\u00ednska \u0159ekli, \u017ee jejich dcera bude t\u011b\u017ece nemocn\u00e1 a mo\u017en\u00e1 se ani nenarod\u00ed. B\u011btu\u0161ka nakonec p\u0159i\u0161la na sv\u011bt a rodi\u010de s n\u00ed pro\u017eili 57 hodin pln\u00fdch l\u00e1sky. D\u00edky d\u011btsk\u00e9mu paliativn\u00edmu t\u00fdmu mohla posledn\u00ed chv\u00edle str\u00e1vit doma, obklopen\u00e1 rodinou. Jej\u00ed p\u0159\u00edb\u011bh dnes pom\u00e1h\u00e1 dal\u0161\u00edm v\u00e1\u017en\u011b nemocn\u00fdm d\u011btem a jejich bl\u00edzk\u00fdm.<\/p>\n\n\n\n
Petru P\u011bchovi ze Zl\u00ednska a jeho man\u017eelce se da\u0159ilo v osobn\u00edm i profesn\u00edm \u017eivot\u011b. Kdy\u017e zjistili, \u017ee \u010dekaj\u00ed t\u0159et\u00edho potomka, pocit \u0161t\u011bst\u00ed se je\u0161t\u011b zn\u00e1sobil. Pak ale p\u0159i\u0161la zpr\u00e1va, kter\u00e1 v\u0161echno zm\u011bnila.<\/p>\n\n\n\n
L\u00e9ka\u0159i nast\u00e1vaj\u00edc\u00edm rodi\u010d\u016fm ozn\u00e1mili, \u017ee se jejich dcera pravd\u011bpodobn\u011b ani nenarod\u00ed. Pokud ano, bude t\u011b\u017ece t\u011blesn\u011b i ment\u00e1ln\u011b posti\u017een\u00e1 a pravd\u011bpodobn\u011b zem\u0159e b\u011bhem prvn\u00edho roku \u017eivota.<\/p>\n\n\n\n
Doporu\u010dili jim proto zv\u00e1\u017eit ukon\u010den\u00ed t\u011bhotenstv\u00ed v ran\u00e9 f\u00e1zi. Z\u00e1rove\u0148 je informovali, \u017ee ale existuj\u00ed i p\u0159\u00edpady, kdy se d\u011bti s podobnou progn\u00f3zou do\u017eily deseti i v\u00edce let.<\/p>\n\n\n\n
Man\u017eel\u00e9 se proto ve t\u0159in\u00e1ct\u00e9m t\u00fddnu rozhodli, \u017ee dceru, kterou u\u017e tehdy pojmenovali B\u011btu\u0161ka, doprovod\u00ed tak daleko, jak jen to bude mo\u017en\u00e9.<\/p>\n\n\n\n
\u010cas se v okam\u017eiku zastavil<\/p>\n\n\n\n
\u201eNajednou bylo v\u0161echno jinak. \u010cas se zastav\u00ed, nev\u00edte, co d\u00e1l. Ve\u0161ker\u00e1 bolest a slo\u017eitost se soust\u0159ed\u00ed do jednoho bodu. V\u0161echny p\u0159edchoz\u00ed n\u00e1ro\u010dn\u00e9 \u017eivotn\u00ed situace se r\u00e1zem zdaj\u00ed tak ban\u00e1ln\u00ed. V jedin\u00e9m okam\u017eiku ztratilo v\u0161echno ostatn\u00ed hodnotu a z\u016fstala jen \u010dist\u00e1 l\u00e1ska k rodin\u011b,\u201c \u0159ekl v t\u00e9 dob\u011b Petr P\u011bcha.<\/p>\n\n\n\n
Od t\u00e9 chv\u00edle byla rodina v kontaktu s d\u011btsk\u00fdm paliativn\u00edm t\u00fdmem, kter\u00fd ji n\u00e1sledn\u011b prov\u00e1zel celou cestou.<\/p>\n\n\n\n
B\u011btu\u0161ka se narodila jako term\u00ednov\u00e9 miminko ve \u010dty\u0159ic\u00e1t\u00e9m t\u00fddnu t\u011bhotenstv\u00ed 29. \u010dervence, v den narozen\u00ed sv\u00e9 star\u0161\u00ed sestry. Rodi\u010de popsali, \u017ee v ten okam\u017eik zmizel ve\u0161ker\u00fd jejich strach z budoucnosti.<\/p>\n\n\n\n
\u201eKa\u017ed\u00e1 spole\u010dn\u00e1 vte\u0159ina byla vz\u00e1cn\u00e1 a napln\u011bn\u00e1 bl\u00edzkost\u00ed. Dali jsme j\u00ed v\u0161e, co jsme mohli \u2013 sv\u016fj \u010das, svou s\u00edlu, cel\u00e9 sv\u00e9 srdce. A ano, ob\u011btovali jsme i kus sebe. Ud\u011blali bychom to v\u0161ak znovu, proto\u017ee i ten nejkrat\u0161\u00ed \u017eivot m\u016f\u017ee zanechat stopu, kter\u00e1 nikdy nezmiz\u00ed,\u201c sd\u00edlej\u00ed spole\u010dn\u011b.<\/p>\n\n\n\n
Pouh\u00fdch 57 hodin spolu<\/p>\n\n\n\n
Rodi\u010de tu\u0161ili, \u017ee jejich spole\u010dn\u00fd \u010das s dcerou bude kr\u00e1tk\u00fd. Byl v\u0161ak je\u0161t\u011b krat\u0161\u00ed, ne\u017e si dovedli p\u0159edstavit. Kdy\u017e se B\u011btu\u0161\u010din \u017eivot ch\u00fdlil ke konci, sanitka ji vezla se zapnut\u00fdmi maj\u00e1ky z nemocnice dom\u016f. Sp\u011bchala, aby mohla novorozen\u00e1 hol\u010di\u010dka zem\u0159\u00edt doma.<\/p>\n\n\n\n
\u201eNev\u011bd\u011bli jsme, kdy to p\u0159ijde, ale d\u00edky paliativn\u00edmu t\u00fdmu jsme mohli posledn\u00ed chv\u00edle s B\u011btu\u0161kou pro\u017e\u00edt doma. To je to nejd\u016fle\u017eit\u011bj\u0161\u00ed, co m\u016f\u017eete sv\u00e9mu d\u00edt\u011bti d\u00e1t. Nen\u00ed to samoz\u0159ejmost a bez odborn\u00e9 pomoci by to ne\u0161lo. Byl to obrovsk\u00fd dar,\u201c sd\u00edl\u00ed rodi\u010de.<\/p>\n\n\n\n
B\u011btu\u0161ka naposledy vydechla v n\u00e1ru\u010d\u00ed sv\u00fdch rodi\u010d\u016f pouh\u00fdch 57 hodin po narozen\u00ed. P\u0159esto\u017ee s n\u00ed rodina mohla str\u00e1vit jen kr\u00e1tk\u00fd \u010das, jej\u00ed rodi\u010de na spole\u010dn\u00e9 chv\u00edle vzpom\u00ednaj\u00ed jako na zku\u0161enost napln\u011bnou bl\u00edzkost\u00ed a obrovskou, bezpodm\u00edne\u010dnou l\u00e1skou.<\/p>\n\n\n\n
B\u011btu\u0161\u010din p\u0159\u00edb\u011bh pom\u00e1h\u00e1 d\u00e1l<\/p>\n\n\n\n
Rodina se rozhodla sv\u016fj p\u0159\u00edb\u011bh sd\u00edlet jednak proto, aby pod\u011bkovala d\u011btsk\u00e9mu perinat\u00e1ln\u00edmu a paliativn\u00edmu t\u00fdmu, a tak\u00e9 proto, aby i dal\u0161\u00ed lid\u00e9 v obdobn\u00e9 situaci m\u011bli mo\u017enost vyu\u017e\u00edt stejnou pomoc.<\/p>\n\n\n\n
\u201eB\u011btu\u0161ka n\u00e1m p\u0159edala mnoho d\u016fle\u017eit\u00e9ho a byla by promarn\u011bn\u00e1 p\u0159\u00edle\u017eitost podle toho d\u00e1l ne\u017e\u00edt. Proto chceme na\u0161i bolestnou zku\u0161enost prom\u011bnit v n\u011bco dobr\u00e9ho \u2013 v pomoc dal\u0161\u00edm d\u011btem a jejich rodin\u00e1m,\u201c sd\u00edl\u00ed rodi\u010de.<\/p>\n\n\n\n
Petr P\u011bcha uvedl, \u017ee \u017e\u00e1dn\u00fd rodi\u010d nechce pom\u00fd\u0161let na to, \u017ee by jeho d\u00edt\u011b mohlo v\u00e1\u017en\u011b onemocn\u011bt nebo zem\u0159\u00edt. Podle n\u011bj se lid\u00e9 podobn\u00fdm p\u0159edstav\u00e1m p\u0159irozen\u011b br\u00e1n\u00ed. Z\u00e1rove\u0148 v\u0161ak \u017e\u00e1dn\u00e1 rodina nem\u00e1 jistotu, \u017ee se j\u00ed podobn\u00e1 situace nem\u016f\u017ee t\u00fdkat.<\/p>\n\n\n\n
A pr\u00e1v\u011b proto se rozhodl zalo\u017eit sb\u00edrku na dobro\u010dinn\u00e9 platform\u011b Donio (https:\/\/donio.cz\/betuska-pomaha-detem-v-paliativni-peci<\/a>) pro Spolek Berli\u010dka, kter\u00fd podporuje d\u011btsk\u00fd a perinat\u00e1ln\u00ed paliativn\u00ed t\u00fdm, spolupracuje s n\u00edm v r\u00e1mci poskytov\u00e1n\u00ed p\u00e9\u010de a pom\u00e1h\u00e1 rodin\u00e1m, kter\u00e9 pe\u010duj\u00ed o d\u011bti s \u017eivot limituj\u00edc\u00edm nebo p\u0159\u00edmo ohro\u017euj\u00edc\u00edm onemocn\u011bn\u00edm. Jeho krok okomentoval i Roman Kalianko, zakladatel Spolku Berli\u010dka.<\/p>\n\n\n\n \u201eP\u0159\u00edb\u011bh B\u011btu\u0161ky se m\u011b dot\u00fdk\u00e1 nejen jako zakladatele Berli\u010dky, dobrovoln\u00edka \u010di koordin\u00e1tora rozvoje d\u011btsk\u00e9 paliativn\u00ed p\u00e9\u010de, ale p\u0159edev\u0161\u00edm jako t\u00e1ty, kter\u00fd s\u00e1m pro\u0161el zku\u0161enost\u00ed se z\u00e1va\u017en\u00fdm onemocn\u011bn\u00edm vlastn\u00edho d\u00edt\u011bte a ztr\u00e1tou. Pr\u00e1v\u011b z t\u00e9to osobn\u00ed zku\u0161enosti a z p\u0159\u00e1n\u00ed pom\u00e1hat dal\u0161\u00edm d\u011btem a rodin\u00e1m Berli\u010dka vznikla,\u201c \u0159ekl.<\/p>\n\n\n\n Paliativn\u00ed t\u00fdm pot\u0159ebuje podporu<\/p>\n\n\n\n Pen\u00edze ze sb\u00edrky podpo\u0159\u00ed i dal\u0161\u00ed rodiny s d\u011btmi, kter\u00e9 trp\u00ed z\u00e1va\u017en\u00fdm \u017eivot limituj\u00edc\u00edm nebo p\u0159\u00edmo ohro\u017euj\u00edc\u00edm onemocn\u011bn\u00edm. V\u00fdt\u011b\u017eek poputuje p\u0159edev\u0161\u00edm na podporu paliativn\u00edho t\u00fdmu, p\u0159\u00edmou i nep\u0159\u00edmou pomoc rodin\u00e1m i rozvoj komunitn\u00ed pomoci.<\/p>\n\n\n\n \u201eZa kr\u00e1tkou dobu fungov\u00e1n\u00ed Berli\u010dky jsme mohli b\u00fdt nabl\u00edzku \u0159ad\u011b rodin. N\u011bkter\u00e9 pe\u010duj\u00ed o d\u00edt\u011b se z\u00e1va\u017en\u00fdm nebo \u017eivot limituj\u00edc\u00edm onemocn\u011bn\u00edm, jin\u00e9 se musely se sv\u00fdm d\u00edt\u011btem rozlou\u010dit. Ka\u017ed\u00e1 z t\u011bchto rodin pot\u0159ebuje n\u011bco jin\u00e9ho. N\u011bkdy praktickou nebo finan\u010dn\u00ed pomoc, zdravotnickou pom\u016fcku \u010di pomoc dobrovoln\u00edk\u016f, jindy podporu sourozenc\u016f nebo jednodu\u0161e v\u011bdom\u00ed, \u017ee na v\u0161echno nemus\u00ed z\u016fstat sama,\u201c vysv\u011btluje Roman Kalianko.<\/p>\n\n\n\n Paliativn\u00ed t\u00fdm dok\u00e1\u017ee ti\u0161it bolest a dal\u0161\u00ed obt\u00ed\u017ee, pom\u00e1h\u00e1 rodin\u011b zvl\u00e1dat t\u011b\u017ek\u00e1 rozhodnut\u00ed a m\u016f\u017ee umo\u017enit, aby d\u011bti str\u00e1vily \u010das, kter\u00fd jim zb\u00fdv\u00e1, v bezpe\u010d\u00ed sv\u00e9ho domova v p\u0159\u00edtomnosti rodiny. I p\u0159esto v\u0161ak jeho funkci st\u00e1t pln\u011b nepokryje a m\u016f\u017ee fungovat jen d\u00edky d\u00e1rc\u016fm.<\/p>\n\n\n\n \u201eRuku na srdce, utr\u00e1c\u00edme za spoustu zbyte\u010dnost\u00ed, a kdy\u017e do n\u011b\u010deho investujeme, chceme z toho n\u011bco m\u00edt. Jen\u017ee d\u011btskou paliativn\u00ed p\u00e9\u010di opravdu vyu\u017e\u00edvat nechcete,\u201c hovo\u0159\u00ed o zku\u0161enosti, kterou mu \u017eivot p\u0159inesl.<\/p>\n\n\n\n V z\u00e1v\u011bru proto pros\u00ed o pomoc pro ty, kte\u0159\u00ed podobnou podporu pot\u0159ebuj\u00ed dnes, nebo ji mohou pot\u0159ebovat v budoucnu.<\/p>\n\n\n\n Pomoc p\u0159\u00edmo v rodin\u00e1ch<\/p>\n\n\n\n Spolek Berli\u010dka sdru\u017euje dobrovoln\u00edky, kte\u0159\u00ed doj\u00ed\u017ed\u011bj\u00ed p\u0159\u00edmo do rodin s t\u011b\u017ece nemocn\u00fdmi d\u011btmi \u010di s d\u011btmi v termin\u00e1ln\u00ed f\u00e1zi r\u016fzn\u00fdch onemocn\u011bn\u00ed.<\/p>\n\n\n\n Vhodn\u011b tak dopl\u0148uj\u00ed odbornou zdravotn\u00ed p\u00e9\u010di, poskytuj\u00ed psychickou oporu rodi\u010d\u016fm a pom\u00e1haj\u00ed zajistit pot\u0159ebn\u00e9 vybaven\u00ed, aby d\u011bti mohly str\u00e1vit sv\u00e9 posledn\u00ed dny nebo t\u00fddny tam, kde to maj\u00ed nejrad\u011bji \u2013 doma mezi sv\u00fdmi nejbli\u017e\u0161\u00edmi, obklopeny l\u00e1skou.<\/p>\n\n\n\n Kate\u0159ina Kofro\u0148ov\u00e1<\/p>\n\n\n\n Den\u00edk.cz<\/p>\n\n\n\n https:\/\/www.denik.cz<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" L\u00e9ka\u0159i man\u017eel\u016fm P\u011bchov\u00fdm ze Zl\u00ednska \u0159ekli, \u017ee jejich dcera bude t\u011b\u017ece nemocn\u00e1 a mo\u017en\u00e1 se ani nenarod\u00ed. B\u011btu\u0161ka nakonec p\u0159i\u0161la na sv\u011bt a rodi\u010de s […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":43712,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-65218","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/65218","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=65218"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/65218\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/43712"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=65218"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=65218"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=65218"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}