Chii chinonzi Hypoplastic Left Heart Syndrome? Zviratidzo, Zvinokonzera, & Kurapa

Hypoplastic left heart syndrome (HLHS) chirwere chisingawanzoitika asi chakakomba chemwoyo chinovapo vana pavanoberekwa. Muchirwere ichi, divi rekuruboshwe remwoyo harivaki zvakanaka panguva yekuzvitakura, zvichiita kuti risakwanise kuburitsa ropa zvakanaka kumusoro.

Izvi zvinoreva kuti mwoyo wemwana wenyu haugone kuita basa rayo rinokosha rekutumira ropa rakaguta okisijeni mumusoro wake wose. Kunyange zvazvo izvi zvinonzwa zvakanyanya, ndinoda kuti muzivi kuti mapoka evarapi vakagadzira kurapwa kunobatsira vana vakawanda vane HLHS kurarama hupenyu hwazvo hwese, hwakanangana.

Chii chinonzi Hypoplastic Left Heart Syndrome?

Hypoplastic left heart syndrome inoitika kana divi rekuruboshwe remwoyo wemwana risina kukura zvakanaka. Shoko rokuti "hypoplastic" rinoreva kuti "risina kukura zvakanaka" kana kuti "duku kwazvo."

Mumwoyo unogara zvakanaka, divi rekuruboshwe rinoburitsa ropa rakaguta okisijeni kumuviri wose. Kana HLHS ikaitika, zvikamu zvakati wandei zvekuruboshwe remwoyo zvinenge zvisingawanikwi, zviduku kwazvo, kana kuti hazvishande zvakanaka. Izvi zvinosanganisira ventricle rekuruboshwe (kamuri huru yekupomba kwemwoyo), mitral valve, aortic valve, uye dzimwe nguva aorta pachayo.

Pasina divi rekuruboshwe rinoshanda, mwoyo wemwana wenyu unovimba zvachose nedevere rekurudyi kuti uite basa riri maviri. Izvi zvinoumba dambudziko rinoda kutarisirwa nekukurumidza mushure mekuberekwa.

Ndeapi zviratidzo zveHypoplastic Left Heart Syndrome?

Zviratidzo zveHLHS zvinowanzooneka mukati memaawa mashoma kana mazuva mushure mekuberekwa. Aya maratidzo anoitika nekuti muviri wemwana wenyu hauna kuwana ropa rakaguta okisijeni rakakwana.

Aya ndiwo zviratidzo zvakajairika zvaunogona kuona:

• Ruvara rweganda rweburi kana rwakasvibira, kunyanya kumativi emota, misumari yeminwe, kana misumari yezvigunwe
• Kunetseka kufema kana kufema nekukurumidza
• Kudya zvishoma kana kuramba kudya
• Kuneta kwazvo kana kushaya simba
• Pulse yakasimba kana kuomesa kwemwoyo nekukurumidza
• Makoto nemaoko anonotonhora
• Kuwedzera kupererwa neperspiration panguva yekudya

Aya maratidzo anogona kukura nekukurumidza uye angave akaoma sezvo kubatana kwemwoyo kwemhando yemwana kunobatsira vana kurarama mudumbu kunotanga kuvhara. Kana ukaona chero chimwe chezviratidzo izvi, tsvaka rubatsiro rwekurapa nekukurumidza.

Chii chinokonzera Hypoplastic Left Heart Syndrome?

HLHS inokura mukati memasvondo masere ekutanga ekuzvitakura apo mwoyo wemwana wako uri kugadzirwa. Chikonzero chaicho hachizivikanwi zvizere, asi hachisi chimwe chinhu chawakaita kana kusaita panguva yekuzvitakura.

Zviitiko zvakawanda zveHLHS zvinoitika pasina nhoroondo yemhuri yematambudziko emwoyo. Zvisinei, genetics inogona kutamba basa duku mumhuri dzimwe. Kana uine mwana mumwe chete ane HLHS, mukana wakakura zvishoma (anenge 2-3%) wekuti vana vemwana ramangwana vangave neizvi kana mamwe matambudziko emwoyo.

Zvinhu zvakatipoteredza panguva yekuzvitakura kwenguva pfupi zvinogona kuita basa, asi vatsvakurudzi vachiri kudzidza aya maonero. Chinonyanya kukosha kunzwisisa ndechekuti HLHS haigone kudzivirirwa, uye haisi mhosva yako zvachose.

Rini unofanira kuona chiremba nezve Hypoplastic Left Heart Syndrome?

HLHS inowanzoonekwa panguva yekutarisa kwenguva dzose kwepakati, kazhinji pakati pevhiki 18-24 yekuzvitakura. Kana chiremba wako akawana HLHS usati waberekwa, achaita hurongwa hwakadzama hwekuberekwa nekutarisirwa nekukurumidza.

Zvisinei, kana HLHS isina kuonekwa usati waberekwa, unofanira kutsvaka rubatsiro rwekurapa nekukurumidza kana mwana wako mutsva akaita chero zviratidzo zvinotyisa. Izvi zvinosanganisira ganda rebhuruu kana rakarembera, kunetseka kufema, kudya zvishoma, kana kurara kwazvo.

Kunyangwe usati waziva kuti chimwe chinhu chakaipa, tendeukira pakunzwa kwako. Zvakanaka nguva dzose kuti uve nevanachiremba vanotarisa mwana wako kana uine hanya nezvekufema kwavo, kudya, kana mazinga emagetsi.

Ndeapi njodzi dzeHypoplastic Left Heart Syndrome?

Kusiyana nemamwe mamiriro ezveutano, HLHS haina zvinhu zvinotyisa zvinoita kuti mukana wako uve nemwana ane chirwere ichi uwedzere. Zviitiko zvakawanda zvinoitika pasina nhoroondo yemhuri yematambudziko emwoyo.

Zvisinei, kune zvinhu zvishoma zvinogona kuwedzera mukana zvishoma:

• Kuva nenhoroondo yemhuri yeHLHS kana mamwe matambudziko emwoyo akaberekwa nayo
• Zvimwe zvirwere zvemajini, kunyange zvazvo izvi zvisingawanzoitika
• Kuita pamuviri nemukomana (HLHS inokanganisa vakomana zvakanyanya kupfuura vasikana)

Zvakakosha kuyeuka kuti aya maitiro haarevi kuti HLHS ichaitika. Vana vazhinji vane aya njodzi vanoberekwa nemwoyo unogara zvakanaka, uye vana vazhinji vane HLHS havafaniri kuva neaya njodzi.

Ndeapi matambudziko anogona kuitika eHypoplastic Left Heart Syndrome?

Pasina kurapwa, HLHS inotyisa mukati memaawa mashoma kana mavhiki ekutanga ehupenyu. Kunyange nekurapwa, kune matambudziko anogara achienderera mberi ayo timu yako yekurapa ichakubatsira kufamba nawo.

Matambudziko anogona kuitika anogona kusanganisira:

• Matambudziko emwoyo (arrhythmias)
• Kugwamba kweropa kunogona kufamba kuenda kune dzimwe nzvimbo dzemuviri
• Kuderedzwa kwekuita zvemitambo sezvo mwana wako achikura
• Stroke, kunyange zvazvo izvi zvisingawanzoitika nekutarisirwa kwakakodzera kwemurapi
• Matambudziko etsinga kana itsvo kubva pakuderera kweropa
• Kunetseka kukura, kunyange zvazvo vana vazhinji vakakura zvakanaka
• Kuoda kuvhiya kwemwoyo kunowedzera gare gare muhupenyu

Kunyangwe runyorwa urwu runonzwa rwakanyanya, rangarira kuti timu yemwana wako yekurapa inonyatsoziva kudzivirira nekutarisira aya matambudziko. Vana vakawanda vane HLHS vanopinda chikoro, kutamba mitambo, uye kuita mabasa akajairika ehudiki.

Hypoplastic Left Heart Syndrome inozwiwa sei?

HLHS inowanzozivikanwa usati waberekwa panguva yekutarisa kwenguva dzose kwepakati. Chiremba wako anogona kuona chimiro chemwoyo uye kuziva kana divi rekuruboshwe risina kukura zvakanaka.

Kana HLHS isina kuonekwa usati waberekwa, vanachiremba vanogona kuiziva mushure mekuberekwa vachishandisa bvunzo dzakati wandei. Izvi zvinosanganisira echocardiogram (ultrasound yemwoyo), iyo inoratidza mifananidzo yakadzama yechimiro nemabasa emwoyo wemwana wako.

Bvunzo dzimwe dzinosanganisira X-rays yechipfuva, electrocardiograms (EKGs), uye pulse oximetry kuyera mazinga eoksijeni muropa remwana wako. Aya bvunzo anobatsira vanachiremba kunzwisisa chaizvo kuti mwoyo wemwana wako uri kushanda sei uye kuronga nzira yakanaka yekurapa.

Kurapa kweHypoplastic Left Heart Syndrome ndekupi?

Kurapa kweHLHS kunosanganisira kuita kuvhiya katatu kwakarongwa, kazhinji kunonzi Norwood procedure pathway. Aya kuvhiya anobatsira kutungamira ropa kuti mwoyo wemwana wako ugone kushanda neventricle imwe chete inoshanda.

Kuvhiya kwekutanga (Norwood procedure) kunowanzoitika mukati mevhiki yekutanga yehupenyu. Kuvhiya kwechipiri (Glenn procedure) kunoitika anenge makore 4-6 ekuberekwa, uye kuvhiya kwechitatu (Fontan procedure) kunowanzoitwa pakati pemakore 2-4.

Pakati pekuvhiya, mwana wako achafanira kutarisirwa zvakanyatsonaka uye angada mishonga yekubatsira mwoyo wavo kushanda zvakanaka. Mimwe mhuri inofungawo nezvekusimudzirwa kwemwoyo seimwe nzira yekurapa, kunyange nzira iyi ine matambudziko ayo uye zvinhu zvekufunga nezvazvo.

Timu yako yekurapa ichaita basa newe kuti uone hurongwa hwakanaka hwekurapa hwakakodzera mamiriro ako chaiwo. Mwana wese akasiyana, uye nguva inogona kuchinja zvichienderana nekuti mwana wako ari kukura sei uye kupindura sei kurapwa.

Maitiro ekutarisira mumba mwana ane Hypoplastic Left Heart Syndrome?

Kutarisira mwana ane HLHS kumba kunoda kutarisisa kune zvinodiwa zvavo zvakasiyana, asi mhuri dzakawanda dzinowana maitiro avo achikurumidza kuita zvakanaka nenguva nekudzidzira.

Mwana wako angada mishonga yenguva dzose yekubatsira mwoyo wavo kushanda zvakanaka. Izvi zvinogona kusanganisira diuretics kubvisa mvura yakawandisa, mishonga yekubatsira mwoyo kupomba zvakanaka, kana blood thinners kudzivirira clots.

Kudya kunogona kuva dambudziko nekuti vana vane HLHS vanowanzopera simba nekukurumidza. Ungada kupa zviduku, zvokudya zvakawanda uye kushanda nemunyanzvi wezvokudya kuve nechokwadi chekuti mwana wako ari kuwana macalories akakwana ekukura kwakanaka.

Tarisa zviratidzo zvinogona kuratidza kuti mwana wako anoda rubatsiro rwekurapa, sekukura kunetseka kufema, kudya zvishoma, kuwedzera kuchema, kana kuchinja mumaitiro avo akajairika. Timu yako yekurapa ichakudzidzisa chaizvo zvekutarisa uye rini yekufona.

Ungagadzirira sei kuenda kunochiremba?

Kuagadzirira kuenda kunochiremba kunogona kukubatsira kuti uwane zvakawanda panguva yako netimu yekurapa yemwana wako. Chengetedza runyorwa rwemibvunzo inouya pakati pekuenda kunochiremba, uye usambofa wakashamisika kubvunza nezve chero chinhu chinokunetsa.

Uya nerecordi yemishonga yemwana wako, kusanganisira nguva yavanoidya uye chero zvinhu zvakaipa zvawaona. Uyewo, chengetedza maitiro ekudya emwana wako, mazinga emagetsi, uye chero zviratidzo zvawaona.

Kana zvichibvira, uya nemumwe wemhuri kana shamwari kuenda kunochiremba. Kuva nekutsigirwa kunogona kukubatsira kuyeuka ruzivo rwakakosha uye kunzwa kushoma kunetseka. Mhuri dzakawanda dzinowana kubatsira kunyora panguva yekuenda kunochiremba kana kubvunza kana vanganyora mirairo yakakosha.

Chii chinonyanya kukosha nezve Hypoplastic Left Heart Syndrome?

HLHS ndechokwadi chirwere chakakomba chemwoyo chinoda kutarisirwa kwenguva refu, asi zvakakosha kuziva kuti vana vakawanda vane HLHS vanokura kuti vararame hupenyu hunogutsa. Kufambira mberi mune zvekuvhiya uye kurapwa kwakavandudza zvikuru zvibereko mumakore mashoma apfuura.

Timu yemwana wako yekurapa inonyatsoziva kutarisira vana vane matambudziko emwoyo akaoma, uye vachava shamwari dzako mukufamba uku. Kunyangwe paine matambudziko, mhuri dzakawanda dzinowana kuti vana vavo vane HLHS vane simba, vana vanoshanda vanopinda chikoro, mitambo, uye mabasa evanhu.

Rangarira kuti hausi wega mukufamba uku. Kune mapoka ekutsigira, nharaunda dzepaIndaneti, uye zviwanikwa zvakasarudzika zvemhuri dzakabatwa neHLHS. Kubatana nemhuri dzimwe kunogona kupa mazano anoshanda, rutsigiro rwepfungwa, uye tariro yeramangwana.

Mibvunzo inowanzo bvunzwa nezve Hypoplastic Left Heart Syndrome

Mwana wangu ane HLHS anogona kurarama hupenyu hunowanzoitika here?

Vana vakawanda vane HLHS vanokura kuti vararame hupenyu hunoshanda, hunogutsa, kunyange zvazvo vachida kutarisirwa kwemwoyo kwenguva refu. Kunyange zvazvo kungave kune mamwe miganho yekuita, vana vakawanda vanopinda chikoro, mitambo, uye mabasa evanhu. Mwana wese akasiyana, uye timu yako yekurapa ichakubatsira kuona zvakakodzera mamiriro ako chaiwo.

Mwana wangu achada kusimudzirwa kwemwoyo here pakupedzisira?

Kwete zvakakosha. Nzira yekuvhiya ine nhanho nhatu (Norwood pathway) yakagadzirirwa kubatsira mwoyo wemwana wako kushanda kwenguva refu neventricle imwe chete. Kunyange zvazvo vamwe vana vangada kusimudzirwa kwemwoyo pakupedzisira, vazhinji vanorarama kwemakore akawanda nemwoyo wavo wakagadzirwa nekuvhiya. Timu yako yekurapa ichaongorora basa remwoyo wemwana wako uye kukurukura sarudzo kana zvichidiwa.

Ndingava nevana vakawanda here mushure mekuva nemwana ane HLHS?

Hungu, mhuri dzakawanda dzinoramba dzichiva nevana vakawanda. Kunyange zvazvo paine mukana wakakura zvishoma (anenge 2-3%) wekuva nemwana mumwe ane chirwere chemwoyo, vakawanda vevana vanotevera vanoberekwa nemwoyo unogara zvakanaka. Chiremba wako anogona kukurukura genetic counseling kana uchida ruzivo rwakadzama nezvenjodzi.

Kuvhiya kunotora nguva yakareba sei uye kudzoreredzwa kunoitwa sei?

Kuvhiya kwese kunowanzoita maawa akawanda, uye nguva yekudzoreredzwa inochinja zvichienderana nekuvhiya uye kupindura kwemwana wako. Kuvhiya kwekutanga kunowanzodiwa nguva yakareba yekugara muchipatara, kazhinji mavhiki akawanda. Kuvhiya kunotevera kungave nemakore ekudzoreredzwa mafupi. Timu yako yekuvhiya ichakupa nguva chaiyo uye zvaunotarisira kune imwe neimwe nzira.

Mabasa api emwana wangu achaita paanokura?

Mazano ekushanda anosiyana kune mumwe nemumwe mwana zvichienderana nebasa remwoyo wavo uye hutano hwese. Vana vakawanda vane HLHS vanogona kuita mabasa ekushambadzira, mitambo yechikoro, uye zviitiko zvevanhu. Cardiologist yako ichaita basa newe kuti uone mazinga ekushanda akakodzera uye inogona kukurudzira kudzivisa mamwe mitambo ine simba yakakwirira nepo uchikurudzira mamwe marudzi ekuita zvemuviri.