Mwoyo weruboshwe wemwana wako hausi kukura zvakanaka here? (Hypoplastic Left Heart Syndrome - HLHS) Ngatikurukurei nezveizvi!

Nhasi tichataura nezvechirwere chemwoyo chakaoma zvishoma, uye chisingawanzoitiki, asi chakakosha zvikuru. Ichi chirwere chinonzi Hypoplastic Left Heart Syndrome , kana kuti (HLHS) muchidimbu. Unganzwa kutya paunonzwa izvi, asi usazvidya mwoyo. Ngatitaurei nezvazvo zviri nyore, nenzira yaunogona kunzwisisa. Nekuti, zvakakosha kuziva zvinhu zvakaita seizvi.

Chii chinonzi hypoplastic left heart syndrome (HLHS)?

Zvichitaurwa zviri nyore, (HLHS) chirwere chemwoyo chinowanikwa pakuzvarwa nacho . Muizvi, zvimwe zvikamu zverutivi rwekuruboshwe rwemoyo wemwana hazvikure zvakanaka. Funga nezvazvo sepombi. Rutivi rwekuruboshwe rwepombi iyi ndirwo runotumira ropa rine oxygen mumuviri wese. Saka, kana rutivi urwu rwekuruboshwe rusingakure zvakanaka, panobva pamuka dambudziko. Muchiitiko ichi, zvikamu izvi zverutivi rwekuruboshwe rwemoyo zvinonyanya kukanganiswa:

• Ventricle yekuruboshwe : Iyi ndiyo kamuri huru iri kurutivi rwezasi rwekuruboshwe rwemoyo. Inopomba ropa rine oxygen muaorta . MuHLHS, kazhinji kacho diki zvekuti haishande zvakanaka.
• Aorta : Iyi ndiyo tsinga yeropa yakakura kwazvo mumuviri wedu. Inotakura ropa kubva pamoyo kuenda kumuviri wese. Mu (HLHS), iyi inogona kusakura zvakanaka.
• Mavharuvhu eMitral neaortic: Aya akafanana nemagonhi. Anongobvumira ropa kuti riyerere nenzira imwe chete. Vharuvhu yeaortic inobvumira ropa kuti riyerere kubva kuruboshwe rweventricle kuenda kuaorta. Vharuvhu yemitral inobvumira ropa kuti riyerere kubva mukamuri repamusoro (atrium) kuruboshwe rwemoyo kuenda mukamuri repasi (mitral valve). MuHLHS, vharuvhu iyi ingasashanda zvakanaka kana kuti ingave diki zvakanyanya.

Dzimwe nguva, vacheche vane HLHS vanogona kunge vaine buri diki pamadziro pakati pemakamuri maviri epamusoro emwoyo (atrial septal defect) . Kazhinji, iri rinofanira kunge riri madziro akakora.

Ndeupi musiyano uripo pakati pemwoyo wakajairika nemoyo une (HLHS)?

Mwoyo wedu une mativi maviri. Rutivi rwerudyi runopomba ropa rakabviswa mweya kubva mumuviri kuenda kumapapu kuti ritore okisijeni. Zvadaro, ropa rine mweya rinoenda kuruboshwe ropombwa kuenda kumuviri wese. Zvisinei, mumwana ane HLHS, rutivi rweruboshwe rwemoyo rudiki zvekuti harukwanise kupomba ropa rakakwana kune muviri wese. Zvadaro, ventricle yekurudyi inotora nzvimbo. Inoedza kupomba ropa kuenda kumapapu nemuviri wese. Izvi zvinoitwa kuburikidza ne ductus arteriosus.Kuburikidza netsinga yeropa inonzi ductus arteriosus. Iyi (ductus arteriosus) itsinga yeropa ine mwana wese mudumbu. Inowanzo vhara mazuva mashoma mushure mekuzvarwa. Asi mumwana ane (HLHS), kana tsinga iyi yeropa ikavhara, kana ikasarapwa, inogona kuisa hupenyu panjodzi. Nekuti divi rekuruboshwe harisi kushanda, nzira chete yekuti ropa risvike mumuviri inovharika.

Yakajairika zvakadii (HLHS)?

(HLHS) chirwere chisingawanzoitiki. Zvichienderana nehuwandu hweUnited States, chinokanganisa mwana mumwe chete pavana 3,800 vanoberekwa gore rega rega. (HLHS) inoumba pakati pe2% ne3% yezvirwere zvemwoyo zvekuzvarwa nazvo (CHD). Chinowanzoitika muvakomana kupfuura vasikana.

Ndezvipi zviratidzo zvemwana ane chirwere che (HLHS)?

Zviratidzo zvemwana ane (HLHS) zvinogona kusaonekwa nekukasika. Zvinogona kuonekwa mukati memaawa mashoma kana mazuva mushure mekuzvarwa. Zviratidzo zvikuru ndeizvi:

• Cyanosis : Ruvara rwebhuruu-grey rweganda, miromo, nenzara. Izvi zvinogona kuoneka seruvara rwegrey muvana vane ganda rakasviba. Zvinogona kuoneka seruvara rwebhuruu muvana vane ganda rakajeka. Izvi zvinokonzerwa nemuviri usingawani oxygen yakakwana.
• Kuoma kufema : Mwana anogona kunzwa sekunge zvakaoma kufema.
• Kuomerwa nekunwa mukaka: Mwana anogona kusada kunwa mukaka, kana kuti anogona kusvipa mate paanenge achinwa mukaka.
• Kuneta : Mwana anogona kuratidzika seane hope uye aneta.
• Kurova kwemoyo nekukurumidza.
• Kudikitira , ganda rakanyorova, kana kunzwa kutonhora.
• Kurova kwemoyo kusina simba .

Kana ukaona chimwe chezviratidzo izvi, zvakakosha kutsvaga rubatsiro rwechiremba nekukasika. Usavhunduke, asi ita chimwe chinhu nekukurumidza.

Ndezvipi zvinokonzera chirwere (HLHS)?

Kazhinji, hapana chikonzero chaicho cheHLHS. Dzimwe nguva zvinogona kunge zvichikonzerwa nezvinhu zvakaita semajini . Vacheche vane mamwe majini akachinja , akadai seGJA1 kana NKX2-5, vari panjodzi yakakura yekuva neHLHS. Uyewo, vacheche vane mamwe majini, akadai seTurner syndrome kana Trisomy 18, vanogona kuva neHLHS.

HLHS inoonekwa sei?

Vanachiremba vanogona kuongorora chirwere cheHLHS vachishandisa nzira dzisina kupindira mumuviri. Izvi zvinogona kuitwa panguva yekuzvitakura kana mushure mekunge mwana aberekwa. Munguva yekuzvitakura:

• Ultrasound yemwana asati aberekwa: Iyi i scan inowanzoitwa panguva yekuzvitakura.
• Echocardiogram yemwana asati aberekwa: Iyi iongororo yakakosha inogona kuongorora matambudziko emwoyo mwana achiri mudumbu.

Mushure mekunge mwana azvarwa: Vanachiremba vanoongorora chirwere ichi nekutarisa zviratidzo uye kutarisa mhedzisiro yebvunzo. Dzimwe nguva, kana muchiteerera moyo wemwana ne stethoscope, munogona kunzwa kurira kwemoyo . Izvi zvinoreva kuti ropa harisi kufamba zvakanaka.

Ndezvipi zviedzo zvinoshandiswa kuongorora chirwere (HLHS)?

• X-ray yechipfuva: Izvi zvinogona kuongorora saizi uye chimiro chemwoyo nemapapu emwana.
• Echocardiogram: Iyi iongororo ye ultrasound. Maumbirwo emukati memwoyo anogona kuonekwa zvakajeka.
• Electrocardiogram (EKG/ ECG ): Iyi inoshandiswa kuyera shanduko dzemagetsi dzinoitika panguva yekurova kwemoyo.
• Kuongorora pulse oximetry: Izvi zvinogona kuona huwandu hweoxygen muropa remwana.

Pane mushonga wekurapa chirwere (HLHS) here?

Ehe, kune mishonga. Kutanga, mwana anofanira kupihwa mushonga unonzi prostaglandin . Izvi zvinochengetedza ductus arteriosus yakavhurika. Izvi zvinogadzira nzira yekuti ropa riyerere mumuviri. Pamusoro pezvo, mimwe mishonga inogona kupihwa kubatsira moyo wemwana kushanda zvakanaka. Mwana angangodawo kubatsirwa kufema. Zvadaro, maoparesheni akati wandei anogona kuitwa. Maoparesheni aya anoshandiswa kutungamira kuyerera kweropa kumapapu nemuviri. Mushure mekuvhiyiwa uku, basa remoyo rinototamiswa zvachose kuenda ku ventricle yekurudyi. Ndiwo unopomba ropa kumuviri wese.

Ndeapi maoparesheni anoitirwa (HLHS)?

Vanachiremba vanovhiya vanoita mabasa matatu makuru: maitiro eNorwood , maitiro eGlenn , uye maitiro eFontan . Maitiro aya anoitwa nenzira yakatevedzana. 1. Maitiro eNorwood: Maitiro aya anoitwa mukati memavhiki maviri ekutanga ehupenyu hwevacheche vane HLHS. Mumaitiro aya, vanachiremba vanovhiya:

• Mhepo yeropa yemwana isina kukura zvakanaka inogadziriswazve kuti ropa riyerere mumuviri.
• Shunt , chubhu diki, inoiswa kuti ibvise ropa kubva mu ventricle yekurudyi, kungave kubva mu aorta, kuenda ku tsinga dzemapapu dzinoenda kumapapu.
• Zvinoita kuti pave nekubatana pakati pemakamuri epamusoro (atria) emwoyo. Izvi zvinobatsira kupa muviri ropa rine oxygen yakawanda kubva mumapapu.

2. Kuvhiyiwa kweGlenn shunt munzira mbiri: KwemwanaKuvhiyiwa kwechipiri kunofanira kuitwa panosvika mwedzi mina kusvika mitanhatu. Panguva yekuvhiyiwa kwaGlenn:

• Shunt yekare iri kubviswa.
• Shunt itsva inoiswa uye inobatanidza vena cava yepamusoro yemwana (SVC) (inotakura ropa risina oxygen kubva kumusoro kwemuviri kuenda kumoyo) kuenda kutsinga dzemapapu.
• Iyi shunt inoderedza mutoro pa ventricle yekurudyi, nekuti inobvumira ropa kuenda zvakananga kumapapu.

3. Maitiro eFontan: Maitiro ekupedzisira anoitwa pakati pemwedzi gumi nemisere nemakore mana . Maitiro aya anobvisa ropa rese rinodzoka kubva mumuviri kuenda kumapapu, richipfuura nepamoyo. Munguva yemaitiro eFontan:

• Vena cava yemwana iri pasi pemuviri (IVC) (inotakura ropa risina oxygen kubva pasi pemuviri kuenda kumoyo) inobatana netsinga dzemapapu.

Pane matambudziko aripo here pakurapwa?

Ehe, vamwe vacheche vanogona kutorasikirwa nehupenyu hwavo pavanenge vachienda kune imwe oparesheni. Zvakare, panogona kuva nematambudziko mushure mekuvhiyiwa kwega kwega. Semuenzaniso:

• Matambudziko ekuti ventricle yekurudyi haisi kushanda zvakanaka.
• Kubuda kwevharuvhu yeaorta.
• Chirwere chechiropa.
• Kurira kwemoyo kusina kujairika.
• Kugwamba kweropa.
• Utachiona.
• Kuomerwa nekudya.
• Kubatwa nepfari.
• Matambudziko eitsvo.
• Kusungwa kwemwoyo.

Izvi zvinhu zvinotyisa kunzwa, asi vanachiremba vachataura newe nezvenjodzi idzi uye vanoedza kukupa kurapwa kwakanakisisa.

Kuisirwa moyo mushonga wakanaka here?

Dzimwe nguva, vanachiremba vanogona kukurudzira kuti munhu aisirwe moyo pachinzvimbo chekuvhiyiwa katatu ikoko. Zvisinei, vacheche vakaisirwa moyo vanofanira kutora mishonga (mishonga inodzvinyirira immune) kweupenyu hwavo hwese.

Ko HLHS inogona kurapwa here mwana asati aberekwa?

Parizvino hazvigoneke kurapa HLHS zvachose nekuvhiyiwa panguva yekuzvitakura. Zvisinei, vanachiremba vemwana ari mudumbu vanogona dzimwe nguva kuita mamwe matanho ekudzivirira mimwe migumisiro yakaipa inogona kuitika kumwana ari kukura ane HLHS (semuenzaniso, vharuvhu diki yeaortic). Asi izvi zvinongoitika chete muzviitiko zvakakosha.

Njodzi ye (HLHS) inogona kuderedzwa here?

Sezvo chikonzero chezviitiko zvakawanda zveHLHS chisingazivikanwe, zvakaoma kutaura kuti tingazvidzivirira sei zvachose. Zvisinei, zvakakosha nguva dzose kutevedzera tsika dzakanaka panguva yekuzvitakura:

• Kudzivisa doro nekusvuta.
• Kudzora zvimwe zvirwere zvakaita seDiabetes Mellitus .
• Kudya chikafu chine hutano.
• Kutora vhitamini yemwana asati aberekwa ine folic acid inosvika 400 micrograms (400 mcg) pazuva .

Kana iwe kana mumwe wako muine nhoroondo yemhuri yeHLHS, zvakanaka kutaura nachiremba wezvemajini musati mabata pamuviri.

Kana mwana wangu aine chirwere che (HLHS), chii chandinofanira kutarisira?

Mushure mekurapwa kweHLHS, mwana wenyu achafanirwa kuona chiremba wemwoyo kanenge kamwe chete pagore kwehupenyu hwake hwese. Izvi zvichaita kuti mwoyo wake, mapapu, nedzimwe nhengo dzemuviri dzishande nemazvo. Mwana wenyu paanokura, achafanirwa kuona nyanzvi yezvirwere zvemwoyo zvekuzvarwa nazvo . Vana vazhinji vane HLHS vachafanira kutora mishonga yemwoyo kwehupenyu hwavo hwese. Vachafanirawo kutora mishonga inorwisa mabhakitiriya vasati vavhiyiwa, kusanganisira kuvhiyiwa kwemazino. Izvi zvinogona kuderedza njodzi ye endocarditis (hutachiona hwemukati memoyo).

Ndeipi tarisiro yemamiriro ezvinhu (HLHS)?

Kana ikasarapwa, HLHS chirwere chinogona kukonzera rufu mukati memazuva kana mavhiki ekuzvarwa. Nekurapwa, mamiriro acho ezvinhu anoenderana nekuoma kwechirwere chemwoyo mumwana. Bvunza chiremba wemwana wako nezvenjodzi dzekuvhiyiwa kwega kwega. Vamwe vana vanogona kunge vasina kugona kurovedza muviri kwenguva refu. Vanachiremba vanowanzo kurudzira kuderedza kurovedza muviri kwakaoma, senge mitambo yemakwikwi.

Vacheche vane chirwere che (HLHS) vanorarama sei?

Ichi ichokwadi chinosuwisa, asi zvakakosha kuziva. Pakati pe20% ne60% yevana vane (HLHS) vanorarama gore rekutanga rehupenyu. Mushure meizvozvo, mwero wekupona kwemakore mashanu, gumi, uye gumi nemashanu anotevera ungangoita 40%. Vana vanozvarwa vaine huremu hwakajairika, vasina kuzvarwa nguva isati yakwana, vane mhedzisiro iri nani pane vana vanozvarwa vaine huremu hushoma. Imwe ongororo yakawana kuti vana vakawanda vakapona mugore rekutanga vachiri vapenyu pazera remakore gumi nemasere.

Zvakaoma kuona nhamba idzi. Asi yeuka, sainzi yezvekurapa iri kuvandudzika zuva nezuva. Mishonga mitsva, matekinoroji matsva ari kuuya. Saka zvakakosha kuchengetedza tariro iri mhenyu.

Ndingatarisira sei mwana wangu?

Vana vanozvarwa vaine chirwere ichi vanogona kurarama hupenyu hwakanaka nekuchengetwa kwenguva refu nachiremba wemwoyo. Unogona kutarisira mwana wako ne:

• Ipa mwana wako mushonga wekudzivirira furuwenza (furuwenza) uye mushonga weCOVID-19 gore rega rega.
• Enda nemwana wako kunoona chiremba wemwoyo mwedzi mitanhatu yega yega kana kamwe chete pagore .
• Ipa mwana wako mushonga wakanyorerwa panguva yakakodzera .
• Deredzai kushanda nesimba kwemwana wenyu , sezvakakurudzirwa nachiremba wenyu.
• Kana mwana wako aine matambudziko ekudzidza , mubatsire.

Mibvunzo ipi yandinofanira kubvunza chiremba wangu?

Kana mwana wako aine HLHS, unogona kubvunza chiremba mibvunzo yakaita seiyi:

• Ndeipi njodzi dzekuvhiyiwa?
• Pane matambudziko ekutarisira mushure mekuvhiyiwa here?
• Mishonga ipi inoda mwana wangu? Pane mimwe migumisiro yakaipa here pamishonga iyoyo?
• Chirwere ichi (HLHS) chichakanganisa sei hupenyu hwemwana wangu?
• Mwana wangu anoda kutarisirwa sei mushure mekuvhiyiwa?
• Kana ndikava nemumwe mwana, pane njodzi here yekuti mwana iyeye azovawo nemwana (HLHS)?

Kuva nemwana ane HLHS kunogona kuva chiitiko chinonetesa mupfungwa uye chinosuruvarisa . Paunenge uchitarisana nekushushikana uye kusava nechokwadi nechirwere chemwoyo chemwana wako, zvakakosha kutsvaga boka rekutsigirana kana imwe nzvimbo yekuwana rutsigiro rwemanzwiro. Kuramba wakasimba mupfungwa kuchakubatsira kutarisana nematambudziko ehutano hwemwana wako.

Mharidzo Yekuenda Nayo Kumba

(HLHS) chirwere chemwoyo chakakomba, chakaberekwa nacho. Zvisinei, kana chikaonekwa nekukurumidza uye chikarapwa nemazvo, vana vane mukana wekurarama hupenyu hwakanaka. Izvi zvinoda kuvhiyiwa kwakawanda kwakaoma uye kutarisirwa kwenguva refu nachiremba. Chinhu chakakosha kuziva kuti hausi wega. Vanachiremba, vanamukoti, nevamwe vashandi vehutano varipo kuti vakubatsire iwe nemwana wako. Zvakakoshawo kuwana rutsigiro kubva kune vamwe vabereki vakambosangana nedambudziko rakafanana. Usarasikirwa neushingi. Zvibayiro zvaunoitira mwana wako hazvikoshi.