Mwana wako ane mamwe ematambudziko aya pamwe chete here? Ngatikurukurei nezveVATER Syndrome / VACTERL Association!

Unganetseka zvikuru kana vanachiremba vakakuudza kuti mwana wako mutsva angoerekana achinja kana kuti akakanganisika muzvikamu zvakasiyana-siyana zvemuviri wake. Pamwe scan dzakaitwa mwana asati aberekwa dzakakupa chiratidzo chechinhu chakadai. Ichi ndicho chirwere chatichataura nezvacho nhasi, VATER Syndrome, kana VACTERL Association. Usazvidya mwoyo, ngatinzwisise izvi zviri nyore.

Chii chinonzi VATER Syndrome / VACTERL Association?

Zvichitaurwa zviri nyore, chirwere cheVATER syndrome iboka rezvirwere zvekuzvarwa nazvo zvinoitika pakutanga kwekukura kwemwana. Zvikurukuru, matambudziko aya anoitika mumavhiki mashoma ekutanga ekukura kwemwana ari mudumbu. Chirwere ichi chinogona kusiyana kubva kumwana mumwe kuenda kune mumwe. Haasi mwana wese achava nezviratidzo zvakafanana. Vanachiremba vanofungidzira chirwere ichi kana paine dambudziko nezvikamu zvitatu zvemuviri zvinowanzomiririrwa nemabhii eVATER.

Mabhii aya ekuti VATER / VACTERL anomirirei?

Iri izwi rekuti "acronym". Kureva kuti, izwi rinoumbwa nekubatanidza mabhii ekutanga emazita eChirungu enhengo dzemuviri dzakabatwa nechirwere ichi. Pakutanga rainzi VATER:

• V - Mutsipa wemusana : Izvi zvinoreva mapfupa madiki (mutsipa wemusana) mumusana .
• A - Huro : Izvi zvinoreva huro .
• T - Trachea : Izvi zvinoreva pombi yemhepo .
• E - Esophagus : Izvi zvinoreva pombi yekudya.
• R - Itsvo : Izvi zvinoreva matambudziko eitsvo .

Gare gare, sezvo matambudziko muzvikamu zviviri zvemuviri aigona kuonekwa nechirwere ichi, chirevo chacho chakawedzerwa zvishoma kuVACTERL:

• C - Mwoyo : Izvi zvinoreva matambudziko ane chekuita nemoyo .
• L - Makumbo : Izvi zvinoreva matambudziko ane chekuita nemakumbo (kunyanya pfupa remusana riri parutivi rwechigunwe chikuru).

Unonzwisisa here zvinorehwa neVACTERL? Izvi zvinoitika kana zvikamu izvi zvakawanda zviine zvimwe zvikanganiso panguva imwe chete.

Ndiani anogona kukanganiswa nechirwere ichi cheVACTERL?

VACTERL inogona kukanganisa chero ani zvake. Haina kugara nhaka. Izvi zvinoreva kuti inowanzobata nhengo imwe chete yemhuri. Kunyangwe chikonzero chaicho chisati chazivikanwa, zvinofungidzirwa kuti inokonzerwa nekusanganiswa kwezvinokonzerwa nemajini uye zvinhu zvakatikomberedza panguva yekuzvitakura.

Kana tichitarisa kuti chirwere ichi chakajairika sei, chinokanganisa mwana mumwe chete pavana vacheche vanosvika zviuru gumi kusvika makumi mana. Zvisinei, nhamba iyi inogona kunge yakakwira nekuti vamwe vana vane zviratidzo zvisinganzwisisike, kana kuti zviratidzo zvishoma chete.

Ndezvipi zviratidzo zveVACTERL syndrome?

Zviratidzo izvi zvinonyanya kuonekwa muzvikamu zvemuviri zvinomiririrwa nemabhii eVACTERL atakataura nezvawo kare. Zvimwe zvezviratidzo izvi zvinoonekwa pakuzvarwa (congenital) , nepo zvimwe zvingazoonekwa gare gare. Zviratidzo izvi zvinogona kusiyana zvikuru kubva kumwana mumwe kuenda kune mumwe. Ngatitarisei chikamu chimwe nechimwe chezvikamu izvi maererano nechikamu chimwe nechimwe.

Matambudziko eMusana (Vertebrae)

Musana chikamu chakakosha kwazvo chemuviri wedu. MuVACTERL, panogona kunge paine shanduko munzira inokura nayo musana uyu.

• Kukombama kwemusana kune rumwe rutivi ( scoliosis ).
• Kukanganisika kwema vertebrae (musana) (semuenzaniso, hemivertebrae , vertebrae yakasanganiswa ).
• Kurasikirwa nepfupa remuswe.
• Zvisina kujairika zvembabvu (mbabvu dzisipo, kuva nembabvu yekuwedzera, mbabvu dzakanamirana kana dzakapatsanurwa).

Fungidzira kuti chimwe chinhu chakadai chingakanganisa sei chimiro chemwana nekufamba-famba kwake kana zvikaitika kumusana.

Matambudziko Ekubuda Netsvina (Anus)

Vamwe vana vane dambudziko iri vanogona kunge vasina anus yakakwana. Izvi zvinoreva kuti gomba rinobuda tsvina rinogona kunge riri diki kana kuti panzvimbo isiriyo. Izvi zvinonziwo anal atresia . Izvi zvinoita kuti zviomere mwana kubuda tsvina.

Matambudziko emwoyo

Matambudziko emwoyo anogona kunge akakomba. MuVACTERL, panogona kuva nematambudziko akasiyana-siyana nemaumbirwo emwoyo uye mashandiro awo.

• Mitsipa mikuru yeropa (aorta nepulmonary artery) inobviswa.
• Maburi ari pakati peatria yemoyo ( atrial septal defects (ASD) ).
• Kurova kwemoyo nekukurumidza ( tachycardia ).
• Kukundikana kwemoyo .
• Kusakura zvakanaka kwekamuri remoyo rekuruboshwe ( hypoplastic left heart syndrome ).
• Kufema nekukurumidza uye/kana kusimba kwechipfuva.
• Zvirwere zvemwoyo zvakaoma zvakaita seTetralogy of Fallot .
• Maburi ari pakati pemakamuri emwoyo ( ventricular septal defects (VSD) ).

Zvimwe zvezvirwere zvemwoyo izvi zvinogona kuisa hupenyu panjodzi. Zvisinei, mamwe maburi, akadai seASD neVSD, anogona kuvhara ega nekufamba kwenguva.

Matambudziko eTrachea neEsophagus

Chimwe chezvirwere zvinowanzoitika muVACTERL ndechekuti trachea nesophagus hazvina kubatana pazvinofanira kunge zviri (Tracheoesophageal fistula. Kana kuti, gumbo harina kubatana zvakanaka nedumbu ( esophageal atresia ). Izvi zvinokonzerwa nekuti:

• Kuomerwa nekunwa mukaka nekudya.
• Zvirwere zvekufema (semuenzaniso pneumonia ).
• Kuoma kumedza.
• Kutadza kufema zvakanaka kunogona kuitika.

Ingofungai, kana paine kusarongeka pakati pepombi yechikafu nepaipi yekufema, chikafu nechinwiwa zvinogona kupinda mumapapu, handiti? Izvo zvine njodzi.

Matambudziko eitsvo

Matambudziko eitsvo nehurongwa hweweti anogona kuonekwawo mudambudziko iri.

• Nzvimbo isina kujairika yeburi reurethra (kunyanya muvakomana - Hypospadias ).
• Itsvo dzisiri kukura zvakanaka ( renal dysplasia ).
• Itsvo dziri panzvimbo isiriyo ( renal ectopia ).
• Weti inoyerera ichidzoka kubva kudundira ichienda kuitsvo ( vesicoureteral reflux ).
• Kuunganidzwa kweweti muitsvo ( Hydronephrosis ).
• Kutapukirwa nezvirwere zvemunzira yeweti kakawanda.

Matambudziko eMakumbo neRadius

MuVACTERL, matambudziko anogona kuonekwa mumakumbo, kunyanya mupfupa remusana riri kurutivi rwechigunwe chikuru cheruoko.

• Kurasikirwa kwakakwana kwepfupa reradius ( radial aplasia ).
• Kusakura zvakanaka kwemapfupa e radius ( radius bone).
• Kurasikirwa nechigunwe chikuru chetsoka.
• Kuva nepfupa rekuwedzera muchigunwe chikuru chetsoka (Triphalangeal chigunwe ).

Pamusoro pezvo, mamwe matambudziko anogona kuonekwawo mune mamwe makumbo (kuwedzera kune radius bone):

• Kuremara kwegumbo ( clubfoot ).
• Kusakwanisa kushandisa minwe nemazvo, sezvo iri midiki ( hypoplasia ).
• Kuva neminwe yakawedzerwa ( polydactyly ).
• Kusanganiswa kwemapfupa maviri eruoko rwemusana ( radioulnar synostosis ).
• Minwe yakabatana (seganda - syndactyly ).

Zvimwe zviratidzo zvinogona kuonekwa pamusoro pezita rekuti VACTERL

Pamusoro pezvikamu zvinodudzwa nemavara eVACTERL, mamwe maitiro anogona kuonekwawo muvana ava.

• Chimiro chisina kujairika chenzeve.
• Kusawirirana kwemativi ese echiso.
• Kutadza kufema nemhino ( choanal atresia ).
• Muzongoza wakabatirirwa panzvimbo imwe chete (muzongoza wakasungwa ).
• Kukura kunonoka kupfuura zvakajairwa.
• Omphalocele (kubuda kweura kunze kwemuviri).
• Kutetepa kwebhokisi renzwi/ dhokotera .

Zvakakosha: Haasi ese maitiro aya ari mumwana wese. Vamwe vana vanogona kunge vaine mashoma chete. Uyewo, kunyangwe maitiro akafanana anogona kusiyana mune mumwe mwana pane mumwe.

Chii chakaita kuti muunganidzwa weVACTERL uumbwe?

Kutaura zvazviri, chikonzero chaicho cheVACTERL syndrome hachisati chawanikwa. Izvi zvichiri kutsvakurudzwa. Zvisinei, maonero aripo pari zvino ndeekuti chirwere ichi chinogona kunge chakakonzerwa nekusanganiswa kwezvinhu zvakasiyana-siyana zvemajini uye zvakatipoteredza zvinokanganisa kukura kwemwana ari mudumbu panguva yekutanga kwekuzvitakura. Kureva kuti, pangave pasina chikonzero chimwe chete, asi zvikonzero zvakawanda pamwe chete.

Nzira yekuziva sei muunganidzwa weVACTERL?

Chirwere cheVACTERL chinowanzoonekwa panguva yekuongororwa kwemwana asati aberekwa kana kuti pakutanga kwehupenyu. Zvisinei, dzimwe nguva zviratidzo zvacho hazvinyatsooneka, saka zvinogona kuonekwa muhudiki kana kunyange mukukura.

VACTERL syndrome "kuongororwa kwekusabatwa nechirwere." Izvi zvinoreva kuti vanachiremba vanotanga vabvisa zvimwe zvirwere zvese nemamiriro ezvinhu anogona kukonzera zviratidzo zvakafanana. Kana pasina chimwe chezvirwere izvi chakawanikwa ndipo pavanoona VACTERL sechikonzero chingangove.

Chiremba achatanga aita ongororo yakakwana yemuviri. Izvi zvichatarisa kana paine zvikanganiso zvekuzvarwa nazvo muchikamu chimwe chete chemuviri chakanyorwa nemabhii eVACTERL atakataura nezvawo kare. Kazhinji, mwana ane VACTERL achava nematambudziko aya muzvikamu zvitatu zvemuviri .

Mushure mekuongororwa kwemuviri, chiremba acharaira mimwe miedzo (semuenzaniso X-rays , ultrasounds , bvunzo dzeropa). Izvi zvinoitirwa kuona chero matambudziko anotyisidzira hupenyu, kunyanya emwoyo neitsvo, kuitira kuti akwanise kurapwa nekukurumidza.

Ndeipi mishonga yekurapa chirwere cheVACTERL?

Pakurapa chirwere cheVACTERL, chinangwa chikuru ndechekuderedza zviratidzo zvinokonzerwa nekusagadzikana uku mumuviri panguva yekukura kwemwana. Nzira dzekurapa dzinosiyana kubva pamwana mumwe kuenda kune mumwe. Izvi zvinodaro nekuti havasi vana vese vane matambudziko akafanana. Mishonga mikuru ndeiyi:

• Kuvhiyiwa: Kuvhiyiwa kunodiwa kugadzirisa matambudziko aya. Dzimwe nguva, kuvhiyiwa uku kunoitwa mukati memazuva mashoma mwana aberekwa, matambudziko makuru asati aitika. Sezvo mwana achikura, zvimwe zvingada kuvhiyiwa.
• Kurapa muviri kana kuti occupational therapy: Kurapa uku kunobatsira kusimbisa tsandanyama uye kuvandudza kufamba kwemajoini.
• Mushonga: Mishonga yakasiyana-siyana inogona kupihwa kudzora nekuderedza zviratidzo.

Unotarisira sei mwana ane chirwere cheVACTERL?

Kuziva kuti mwana wako ane chirwere cheVACTERL kunogona kuva chiitiko chakaoma. Asi yeuka, hausi wega. Mwana wako achada kurapwa nguva dzose uye kutariswa kuti agadzirise zviratidzo muhupenyu hwake hwese.

Semunhu ari kutarisira mwana, une basa guru.

• Gara uchiziva hutano nekukura kwemwana wako. Tarisa kuti uone kana mwana wako ari kusvika padanho rekukura rinoenderana nezera rake (semuenzaniso, kubata musoro, kukunguruka, kugara, kufamba).
• Gara uchitaurirana navanachiremba vari kurapa mwana wako. Mwana ane VACTERL anowanzoda rubatsiro rwevanachiremba vakawanda (semuenzaniso, vanachiremba vevana, vanachiremba vemwoyo, vanachiremba vezvepfungwa, vanachiremba vezvemapfupa). Ramba uine hukama hwakanaka navo vese.
• Dzimwe mhuri dzinoona mazano ezvemajini achibatsira zvikuru. Izvi zvinogona kuvabatsira kudzidza zvakawanda nezvechirwere chemwana wavo, kukurukura nzira dzekurapa nadzo, uye kuwana simba repfungwa ravanoda kuti vatarisane nedambudziko iri.

Ko chirwere cheVACTERL chinogona kudzivirirwa here?

Sezvo chikonzero chaicho cheVACTERL syndrome chisati chazivikanwa, hapana nzira yekudzivirira. Tsvagiridzo iri kuenderera mberi yekuona kuti chii chinokonzera chirwere ichi uye kuti ndeapi matambudziko aripo muvabereki vatsva.

Munhu ane chirwere cheVACTERL anogona kutarisira zvinhu zvipi?

Munguva yekuzvitakura, taura nachiremba wako nezvekuti iwe nemwana wako mungaramba sei muine hutano hwakanaka. Kuongororwa kwemajini uye kutarisirwa kwemwana asati aberekwa zvinogona kuona humwe hunhu hweVACTERL mwana wako asati aberekwa. Vanachiremba vanogona kugadzirira kutanga kurapwa mwana wako achangoberekwa.

Mushure mekunge mwana azvarwa, vanachiremba vanotanga vatarisa kuti vaone kana mwana wacho aine hutano hwakakwana hwekurapa zviratidzo zvinogona kutyisidzira hupenyu. Kurapwa kunogona kudiwa muhupenyu hwese, sezvo zviratidzo zvitsva zvingaonekwa kana zviratidzo zvekare zvingachinja panguva yehudiki nekukura.

Hapana mushonga weVACTERL syndrome. Zvisinei, kana mwana akarapwa zvakanaka uye akatarisirwa zvakanaka, anogona kubatsirwa kurarama hupenyu hwakanaka.

Unofanira kuona chiremba rini?

Kana mwana wako aine zviratidzo zveVACTERL uye zvichikanganisa mabasa ake ezuva nezuva kana kukura kwake, iva nechokwadi chekuona chiremba.

Nguva yekuenda kuchipatara che emergency:

• Kana kurova kwemoyo kwemwana kusina kurongeka.
• Kana usingadye chikafu kana kunwa mukaka.
• Kana uchinetseka kufema.
• Kana usingakwanise kuita weti kana kubvisa tsvina.

Mumamiriro ezvinhu akadai, usanonoka kunyange zvishoma.

Mibvunzo ipi yaunofanira kubvunza chiremba wako?

Zvakajairika kuva nemibvunzo yakawanda paunonzwa nezvechirwere chemwana wako. Usatya kubvunza chiremba wako zvese zvaunogona. Heano mimwe mienzaniso:

• Mwana wangu anofanira kuvhiyiwa here?
• Ndezvipi migumisiro yekurapa kwamunokurudzira?
• Ndingaitei kana mwana wangu asiri kusvika padanho rekukura?
• Nzira yekutarisira mwana achangoberekwa mushure mekuvhiyiwa?

Pamusoro pemibvunzo iyi, bvunza chero chauri kufunga. Vanachiremba varipo kuti vakubatsire.

Pakupedzisira, zvinhu zvekurangarira

Vana vacheche vane matambudziko akawanda ekuzvarwa nawo, saka zvakajairika kunzwa kunetseka paunoona kuti hauzokwanisi kuendesa mwana wako kumba munguva pfupi iri kutevera. Asi yeuka, timu yevanachiremba vane hunyanzvi ichaita zvese zvavanogona kuti ipe mwana wako kurapwa kwakakodzera uye kubvisa zviratidzo zvinogona kutyisidzira hupenyu hwake.

Vabereki nevachengeti vazhinji vanowana nyaradzo huru neruzivo kubva kumasevhisi akadai semajini ekupa mazano mushure mekuonekwa kuti vane chirwere cheVACTERL. Saka, musazeza kutsvaga rubatsiro kubva kubasa rakadaro. Nekurapwa kwakakodzera, rudo, uye kutarisirwa, unogona kubatsira mwana wako kurarama hupenyu hwakanakisisa.

VATER syndrome, kusangana kweVACTERL, kusarongeka kwekuzvarwa nakwo, kuremara kwekuzvarwa, hutano hwemwana, hutano hwemwana, kukura kwemwana ari mudumbu, kuremara kwemapfupa emusana, kupererwa kwetsvo, kuremara kwemoyo, tracheoesophageal fistula, kuremara kweitsvo, kuremara kwemakumbo, Sri Lanka