Ko musana wemwana idambudziko rekuzvarwa naro here? Ngatitaurei nezve myelomeningocele!

Zvinofadza sei kufunga nezvemwana wako mudumbu mako! Asi dzimwe nguva, vana vedu vanouya munyika ino vaine matambudziko ehutano asingatarisirwi. Nhasi, tichataura nezvedambudziko rakaoma rekuzvarwa naro rinoitika panguva yekukura kwemutsipa wemusana, kana kuti musana, mwana achiri mudumbu. Izvi zvinonzi myelomeningocele. Ungave wakambozvinzwawo se "Open Spina Bifida". Ichi chirwere chaicho apo musana wemwana, kana kuti muzongoza, hauvharike zvakanaka.

Chii chaizvo chinonzi myelomeningocele?

Zvichitaurwa zviri nyore, myelomeningocele chirwere chekuzvarwa nacho umo musana wemwana wako nemuzongoza hazvivharike zvachose asati aberekwa, ari mudumbu. Iyi imhando ye neural tube defect (NTD). Ungave wakaomerwa nekududza zita iri, handiti? Rinodaidzwa sekuti 'my-e-lo-men-in-go-ceil'.

Myelomeningocele inoitika mukati memavhiki mana ekutanga ekubata pamuviri. Apa ndipo apo tsinga yemwana inotadza kuvharika zvakanaka, zvichiita kuti saga rakazara nemvura ribude kubva kumusana wemwana. Kunyanya, saga racho rinogona kunge riine:

• Chikamu chemusana wavo
• Matumbu - matishu anofukidza musana wavo
• Tsinga
• Mvura yemusana (CSF) imvura inokosha inowanikwa muuropi nemumusana.

Myelomeningocele inogona kuitika chero kupi zvako pamusana wemwana, asi inowanzoonekwa mumusana wepazasi (nzvimbo dzepachiuno nedzepachiuno) , kureva kuti, munzvimbo yechiuno.

Chinosuwisa ndechekuti musana netsinga dziri mukati mebhegi zvinokuvadzwa. Izvi zvinowanzo kukonzera kushaya simba kana kurasikirwa nemanzwiro muzvikamu zvemuviri zviri pasi pebhegi . Muzvimwe zviitiko, bhegi rinogona kuputika. Izvi zvinogona kuitika nekuda kwekufamba kwenguva dzose kwemwana ari mudumbu, kana kuti zvinogona kuitika pakuzvarwa.

Myelomeningocele ndiyo mhando yakanyanya ye spina bifida, uye inogona kukonzera kuremara kuri pakati nepakati kusvika kwakanyanya. Semuenzaniso, kushaya simba kwetsandanyama, kurasikirwa nekutonga kwedundira kana ura, uye/kana kuoma mitezo . Zvisinei, vacheche vane chirwere ichi vanodzika pasi pemusana vanowanzova nezviratidzo zvishoma pane vacheche vane chirwere ichi kumusoro kwemusana.

Chii chinonzi neural tube defect?

Zvirwere zveNeural Tube (NTDs) zvirema zvekuzvarwa nazvo (mamiriro ekuzvarwa nawo) muuropi, musana, kana musana. Zvinowanzoitika mukati memwedzi wekutanga wepamuviri - dzimwe nguva usati watomboziva kuti une pamuviri. Mhando mbiri huru dzezvirema zveneural tube ndedze spina bifida neanencephaly.

Izvi ndizvo zvinowanzoitika: Mumwedzi wekutanga wepamuviri, mativi maviri emusana wemwana anosangana pamwe chete kuti agadzire chifukidziro chemusana, tsinga dzemusana, uye meninges (nyama inofukidza musana). Panguva iyi, uropi huri kukura nemusana wemwana hunonzi neural tube.

Saka, kana paine chikanganiso kana dambudziko pakuumbwa kwechubhu iyi yetsinga, inonzi defect yechubhu yetsinga.

Musiyano uripo pakati peSpine Bifida neMyelomeningocele ndeupi?

`Spina Bifida` zvinoreva chero dambudziko rekuzvarwa naro iro tsinga yetsinga yakakomberedza musana isingavharike zvachose.

Spina Bifida inogona kuitika chero kupi zvako pamusana wemwana, sezvambotaurwa, kana tsinga yeropa ikasavhara zvachose mudumbu. Kana izvi zvikaitika, tsinga yemusana, iyo inodzivirira tsinga yemusana, haivhari zvakanaka. Izvi zvinogona kukonzera kukuvara kwetsinga dzemusana netsinga dzemwana.

Myelomeningocele rudzi rwe spina bifida - uye yakanyanya kuoma. Ibhegi rakazara nemvura inobuda kumusana wemwana, ine chikamu chemusana netsinga. Mamwe marudzi e spina bifida ndiwo meningocele ne spina bifida occulta.

Musiyano uripo pakati peMeningocele neMyelomeningocele ndeupi?

Myelomeningocele nemeningocele mhando mbiri dze spina bifida, asi pane musiyano mudiki.

Meningocele chirwere apo saga rakazara nemvura rinobuda paburi riri kumusana wemwana, asi saga racho harina musana wemwana . Izvi zvinowanzo kukonzera kukuvara kushoma kana kusakonzera kukuvara kwetsinga.

Asi mu myelomeningocele , mune chikamu chemusana netsinga mukati mebhegi iroro, uye zvakakuvara . Ndizvo zvinoita kuti zvinhu zviwedzere kuipa.

Ndiani anobatwa neMyelomeningocele?

Myelomeningocele inogona kukanganisa chero mwana ari mudumbu. Kunyange hazvo masayendisiti asina chokwadi kuti chii chinokonzera izvi, vakaona zvimwe zvinhu zvakaita semajini, zvakatipoteredza, uye zvekudya zvinowedzera njodzi yemwana yekuva nechirwere ichi.

Dambudziko iri rakajairika zvakadii?

Myelomeningocele chirwere chinoitika mutsinga huru dzetsinga.Dambudziko rekuzvarwa naro rinowanzoonekwa (kuremara kwekuzvarwa naro). Semuenzaniso, chirwere ichi chinokanganisa vana vanosvika 1,645 vanoberekwa gore rega rega muUnited States. Vana vanozvarwawo vaine chirwere ichi muSri Lanka.

Ndezvipi zviratidzo zveMyelomeningocele?

Mwana ane myelomeningocele ane bhegi rakazara nemvura rinoyerera nemusana kubva pakati pemusana . Vanachiremba vanowanzoona chirwere ichi panguva yekuzvitakura ne ultrasound scan.

Mwana ane myelomeningocele anogonawo kuva nezvimwe zvirema zvekuzvarwa nazvo. Vana vanosvika 8 pa10 vane chirwere ichi vanewo chirwere chinonzi hydrocephalus, chinova chinhu chinounganidzwa muuropi .

Mamwe matambudziko emusana kana musculoskeletal system anogona kunge aine chekuita ne myelomeningocele anosanganisira:

• Syringomyelia (chirwere chizere nemvura mukati memuzongoza)
• Kubuda kwehudyu

Ndezvipi zvinokonzera Myelomeningocele?

Vanachiremba nemasayendisiti havasati vaziva chikonzero chaicho che myelomeningocele, asi vanotenda kuti chirwere ichi chakaoma chinokonzerwa nekusanganiswa kwezvinhu zvemajini, zvekudya, uye zvakatipoteredza .

Zvikuru sei, huwandu hushoma hwe folic acid mumuviri waamai vasati vasvika uye panguva yekuzvitakura hwakaratidzwa kuti hunokonzera kukanganiswa kwerudzi urwu rwekuzvarwa narwo. Folic acid (inozivikanwawo se folate) inokosha pakukura kwehuropi hwemwana ari mudumbu nemusana.

Myelomeningocele inoonekwa sei mwana asati aberekwa?

Kazhinji (asi kwete nguva dzose) vanachiremba vanogona kuongorora myelomeningocele mumwana ari mudumbu panguva yekuzvitakura. Vanoshandisa bvunzo idzi:

• Kuongororwa kweropa: Chiremba wako acharaira kuti ropa riongororwe pakati pemavhiki gumi nematanhatu kusvika gumi nemasere ekuzvitakura iro rinoyera chinhu chinonzi alpha-fetoprotein (AFP). Vanenge 75% kusvika 80% yevakadzi vane pamuviri vane mwana ane spina bifida vane huwandu hwakakwira hweAFP iyi kupfuura hwakajairika. Kana huwandu hwako hwakakwirawo, chiremba wako acharaira mimwe miedzo, yakaita se ultrasound scan, kuti mwana awedzere kuongororwa.
• Ultrasound yemwana asati aberekwa: Kuongororwa kweultrasound panguva yekuzvitakura ndiyo nzira chaiyo yekuongorora myelomeningocele. Vanachiremba vanowanzo kurudzira kuongororwa kweultrasound mu trimester yekutanga (vhiki 11-14) uye trimester yechipiri (vhiki 18-22). Kuongororwa kwe trimester yechipiri kunogona kunyatsoongorora chirwere chacho.
• Kuongororwa kweAmniocentesis:Kana ultrasound yemwana asati aberekwa ikaonekwa kuti ane myelomeningocele, chiremba wako anogona kukurudzira kuti uedze amniocentesis test. Izvi zvinoitirwa kutarisa zvirwere zvisingawanzoitiki zvine chekuita nemyelomeningocele. Izvi zvinosanganisira chiremba kushandisa tsono kutora mvura kubva muamniotic sac yakakomberedza mwana asati aberekwa. Pane njodzi dzakati wandei nebvunzo iyi, saka zvakakosha kukurukura izvi nachiremba wako.

Kana isina kuonekwa panguva yekuzvitakura, myelomeningocele inoonekwa mushure mekunge mwana aberekwa uchishandisa bvunzo dzemifananidzo dzakadai seMRI (Magnetic Resonance Imaging) scan kana CT (Computed Tomography) scan.

Ndeapi marapirwo ekurapa Myelomeningocele?

Kurapa kwe myelomeningocele kwakajairika kuvhiyiwa kwekuvhara buri riri mumusana wemwana .

Vanachiremba vanogona kuita oparesheni iyi mwana asati aberekwa (fetal surgery) kana kuti nguva pfupi mushure mekuzvarwa (postnatal surgery) .

Nekuti vacheche vane myelomeningocele vanowanzova nehydrocephalus (kuungana kwemvura muuropi), ventriculoperitoneal (VP) shunt inogonawo kudiwa kubvisa mvura yakawandisa muuropi hwemwana.

Vana vazhinji vachada kurapwa kwehupenyu hwavo hwese kuti vagadzirise matambudziko anokonzerwa nekukuvara kwemusana wavo netsinga. Mishonga inowanzo shandiswa inosanganisira mishonga inorwisa mabhakitiriya kudzivirira hutachiona hwakadai semeningitis (hutachiona hweuropi) kana hutachiona hweweti (UTIs) uye kurapwa kwemuviri.

Kuvhiyiwa kwemwana asati aberekwa kwe myelomeningocele

Kuvhiyiwa kwemwana asati aberekwa inzira inogona kusarudzwa zvichienderana nekuoma kwe myelomeningocele uye hutano hwaamai vane pamuviri. Rudzi urwu rwekuvhiyiwa rwuri kuramba ruchiwanda.

Kunyangwe kuvhiyiwa uku kuchigona kudzivirira zviratidzo kuti zvisawedzere kuipa, hakugone kugadzirisa kukuvara kwakatoitwa kumusana kana tsinga .

Zvakakosha: Kune matambudziko ane chekuita nekuvhiyiwa uku kwemwana ari mudumbu, akadai sekuwedzera kwenjodzi yekusununguka nguva isati yakwana uye kubuda kweropa muchibereko.

Kuvhiyiwa kwe myelomeningocele mushure mekusununguka

Kana mwana wako asina kuvhiyiwa mwana ari mudumbu kuti agadzirise spina bifida, kuvhiyiwa kunofanira kuitwa nekukurumidza mushure mekuzvarwa - zvakanaka mukati memaawa makumi mana nemasere ekutanga ekuzvarwa - kuderedza njodzi yekutapukirwa.

Vanachiremba vapi vanofanira kuoona mwana wangu ane myelomeningocele?

Vana vazhinji vane myelomeningocele vanobatsirwa nerutsigiro rwechikwata chevanhu vane hunyanzvi hwakasiyana-siyana kuti varonge kutarisirwa kwavo nekutarisira. Nyanzvi dzinogona kunge dzichibatanidzwa mukutarisirwa kwemwana wenyu dzinosanganisira:

• Chiremba wetsinga
• Chiremba wepfungwa
• Chiremba wemwana asati aberekwa
• Chiremba wezvedundira
• Chiremba wemapfupa
• Chiremba weganda
• Murapi wemuviri

Ndezvipi zvinhu zvinokonzera myelomeningocele?

Zvinosuwisa kuti, matambudziko ekuzvarwa nawo akadai se myelomeningocele haagone kudzivirirwa zvachose - njodzi yacho inogona kuderedzwa chete . Kazhinji, chirwere ichi chinoitika nguva nenguva. Asi masayendisiti akaona zvinhu zvakawanda zvinokonzera njodzi zvine chekuita nechirwere ichi. Izvi ndeizvi:

• Kushaikwa kweFolate (folic acid): Folate, rudzi rwechisikigo rwevhitamini B9, rwakakosha pakukura kwakanaka kwemwana ari mudumbu. Kushaikwa kweFolate kunowedzera njodzi yekuva nespina bifida nezvimwe zvirwere zvetsinga dzemudumbu (NTDs). Kana uri nepamuviri kana kuti uchironga kuva nepamuviri, zvakakosha kutora mavitamini epamuviri kuti uve nechokwadi chekuti uri kuwana folate (folic acid) nezvimwe zvinovaka muviri zvaunoda kuti uve nepamuviri une hutano.
• Nhoroondo yemhuri yezvirwere zvetsinga dzemutsinga: Vanhu vane mwana mumwe chete ane chirwere chetsinga dzemutsinga vane mukana wekuwedzera we3% wekuva nemwana wechipiri ane chirwere ichi. Uyewo, vakadzi vane chirwere chetsinga dzemutsinga dzemutsinga (NTD) vane mukana wekuva nemwana ane chirwere chetsinga dzemutsinga kupfuura avo vasina chirwere ichi. Zvisinei, vacheche vazhinji vane chirwere chetsinga dzemutsinga vanozvarwa nevabereki vasina nhoroondo yemhuri yechirwere ichi.
• Mishonga yekudzivirira pfari: Mimwe mishonga yekudzivirira pfari yakawanikwa iine chekuita nekuwedzera kwenjodzi yekukanganisika kwetsinga dzeropa kana ikatorwa panguva yekuzvitakura.
• Chirwere cheshuga: Vakadzi vane pamuviri vane chirwere cheshuga chisina kudzorwa zvakanaka vane mukana wakawanda wekuva nemwana ane myelomeningocele.
• Kufuta: Vakadzi vakafuta vasati vabata pamuviri vane mukana wakawanda wekubereka mwana ane dambudziko retsinga dzemutsinga, kusanganisira myelomeningocele.
• Kupisa muviri kwakanyanya:Zvakaonekwa kuti kuwedzera kwekushisa kwemuviri (hyperthermia) mumavhiki ekutanga ekuzvitakura, kungave nekuda kwefivha isingaperi kana kushandisa sauna kana hot tub, kunowedzera zvishoma njodzi ye myelomeningocele.

Yeuka kuti kuva nemwana ane myelomeningocele haisi mhosva yako. Munhu wese ane zera rekubereka ari panjodzi yekuva nepamuviri wakakanganiswa nechirwere chekuzvarwa nacho.

Chii chinonzi fungidziro ye myelomeningocele?

Hapana vanhu vaviri vane myelomeningocele vanobatwa nenzira imwechete. Kufanotaura kwechirwere ichi kunoenderana nezvinhu zvakati wandei. Izvi zvinosanganisira:

• Mamiriro ekutanga emusana wavo netsinga dzavo.
• Kuti muromo wemusana wakakwira kana kuti wakaderera zvakadii.
• Bhegi iroro rakavhurika here kana kuti rakavharika?
• Vangave vakavhiyiwa vasati vaberekwa kana kuti mushure mekusununguka.

Huwandu hwevanhu vane spina bifida vanofa ne1% pagore vari pakati pemakore mashanu nemakumi matatu. Kana gomarara remusana rakwira, njodzi yematambudziko nerufu inowedzera.

Migumisiro nematambudziko e myelomeningocele zvinogona kukanganisa hupenyu hwevanhu zvakanyanya. Vanhu vane chirwere ichi vanowanzosangana nekuora mwoyo, kuzvidya mwoyo, uye maitiro ekuzvipa njodzi .

Ndezvipi zvinetso zve myelomeningocele?

Matambudziko anokonzerwa ne myelomeningocele ndeaya:

• Kuoma mitezo uye/kana kurasikirwa nemanzwiro muzvikamu zvemuviri zviri pasi penzvimbo yebhegi rine mvura (ronda).
• Kusafamba zvakanaka nekuda kwekushaya simba kwetsandanyama.
• Matambudziko emapfupa ane chekuita nekuoma mitezo , semuenzaniso scoliosis (kukombama kwemusana), kukwenya kwechiuno, uye kutyoka kwechiuno.
• Kurasikirwa nekudzora dundira uye/kana ura.
• Kuwanikwa kwezvirwere zvemunzira yeweti (UTIs) kakawanda.
• Meningitis (hutachiona hweuropi).
• Kurwara neLatex.
• Kusiyana kwekudzidza kana kunonoka kukura (kusagadzikana kwepfungwa).
• Pfari `(Kubatwa nepfari)`.

Ndingachengeta sei mwana wangu ane myelomeningocele?

Chinhu chakakosha kurangarira ndechekuti hapana vanhu vaviri vane myelomeningocele vanobatwa nenzira imwechete. Hapana nzira yekuziva zvechokwadi kuti mwana wako achabatwa sei. Chinhu chakanakisa chaungaita kutaura nachiremba ane hunyanzvi mukutsvaga nekurapa spina bifida nemyelomeningocele.

Mwana wako paanokura, chikwata chevanachiremba vane hunyanzvi chichamubatsira kutarisira zvaanoda.Anogona kubatsira.

Ndirini pandinofanira kutaura nachiremba wemwana wangu nezve myelomeningocele?

Kana mwana wako akazvarwa aine myelomeningocele, anofanira kuona chiremba wake - kana timu yevanachiremba - nguva nenguva muhupenyu hwake hwese.

Zvikuru sei, zvakakosha kutaura nachiremba wemwana wako nekuda kwezvikonzero zvinotevera:

• Kana mwana wako anonoka kutanga kufamba kana kuti anonoka kutanga kukambaira.
• Kana mwana wako aine zviratidzo zvehydrocephalus, semuenzaniso, nzvimbo yakapfava yakazvimba pahuma, kushatirwa, hope dzakanyanya, uye kunetseka kudya.
• Kana mwana wako aine zviratidzo zve meningitis, anogona kunge aine fivha, mutsipa wakaoma, kushatirwa, uye kuchema zvakanyanya.

Mibvunzo ipi yandinofanira kubvunza chiremba wangu nezve myelomeningocele?

Kana chiremba wako achifungidzira kuti une myelomeningocele, zvingabatsira kukubvunza mibvunzo iyi:

• Ndingaitei kuti ndirambe ndiine hutano hwakanaka panguva yese yekuzvitakura kwangu?
• Mungakurudzira here vanachiremba nenyanzvi dzinonyanya kushandisa Spina Bifida neMyelomeningocele?
• Ndezvipi zvingasarudzwa zvekurapa myelomeningocele?
• Ndezvipi njodzi uye mabhenefiti ekuvhiyiwa kwemwana asati aberekwa uye kuvhiyiwa kwekugadzirisa mwana mushure mekusununguka?
• Ndiri panjodzi here yekuve nemumwe mwana ane myelomeningocele?
• Une ruzivo here nezvemapoka ekutsigira vanhu vane myelomeningocele nevabereki vevana vakadaro?

Kuziva kuti mwana wako ane chirwere chakakomba kunogona kukuomera. Asi yeuka kuti hausi wega - kune zvinhu zvakawanda zvekubatsira iwe nemhuri yako. Zvakakosha kutaura nachiremba ane ruzivo nezve myelomeningocele kuti udzidze zvakawanda nezvekuti inokanganisa sei mwana wako uye kuti ungagadzirira sei.

Mharidzo Yekuenda Nayo Kumba Kubva Kwatiri

Myelomeningocele chirwere chinonetsa kuzvarwa nacho. Asi kana ukapihwa rubatsiro rwakakodzera rwechiremba, rutsigiro, uye rudo, vana ava vanogona kurarama hupenyu hwakanaka . Zvakakosha kuziva chirwere ichi mumwana ari mudumbu uye kutsvaga kurapwa nekukurumidza. Kutora matanho akadai sekuwana folic acid yakakwana kunogonawo kuderedza njodzi yechirwere ichi. Kana uine mimwe mibvunzo nezveizvi, usazeza kutaura nachiremba wako.

Myelomeningocele , spina bifida, zvirema zvekuzvarwa, zvirema zve neural tube, musana, hutano hwemwana, pamuviri