Ese urutirigongo rw'umwana ni ikibazo cy'ivuka? Reka tuvuge kuri myelomeningocele!

Mbega ukuntu ari byiza gutekereza ku mwana wawe uri mu nda yawe! Ariko rimwe na rimwe, abana bacu baza muri iyi si bafite ibibazo by'ubuzima bitunguranye. Uyu munsi, tugiye kuvuga ku kibazo gikomeye cyo kuvukana kivuka mu gihe cy'imikurire y'umugongo, cyangwa uruti rw'umugongo, mu gihe umwana akiri mu nda. Ibi byitwa myelomeningocele. Ushobora kuba warigeze kubyumva nka "Open Spina Bifida". Iyi ni indwara aho uruti rw'umugongo rw'umwana, cyangwa uruti rw'umugongo, rudafunga neza.

Mu by'ukuri, myelomeningocele ni iki?

Mu magambo make, myelomeningocele ni indwara iterwa n'uko uruti rw'umugongo rw'umwana wawe n'umuyoboro w'umugongo bidafunga neza mbere yo kuvuka, mu nda ya nyina. Ubu ni ubwoko bw'indwara y'imitsi yo mu bwonko (NTD). Ushobora kugorwa no kuvuga iri zina, si byo se? Rivugwa nka 'my-e-lo-men-in-go-ceil'.

Myelomeningocele ibaho mu byumweru bine bya mbere nyuma yo gusama. Ibi bibaho iyo umuyoboro w'imitsi y'umwana unaniwe gufunga neza, bigatuma agasaho kuzuye amazi gasohoka inyuma y'umugongo w'umwana. By'umwihariko, agasakoshi gashobora kuba karimo:

• Igice cy'umugongo wabo
• Meninges - ingirangingo zipfutse uruti rw'umugongo
• Imitsi
• Amazi yo mu bwonko (CSF) ni amazi y'ingenzi aboneka mu bwonko no mu ruti rw'umugongo.

Myelomeningocele ishobora kugaragara ahantu hose ku ruti rw'umugongo rw'umwana, ariko ikunze kugaragara cyane mu mugongo wo hasi (mu gice cyo ku ruhu no mu gice cyo hasi cy'umugongo) , ni ukuvuga mu gice cyo mu rukenyerero.

Ikibabaje ni uko uruti rw'umugongo n'imitsi iri mu gafuka byangiritse. Ibi akenshi bitera intege nke cyangwa kubura ibyiyumvo mu bice by'umubiri biri munsi y'agafuka . Hari ubwo agafuka gashobora gucika. Ibi bishobora guterwa n'ingendo zisanzwe z'umwana akiri mu nda, cyangwa bikabaho akivuka.

Myelomeningocele ni yo ndwara ikomeye cyane ya spina bifida, kandi ishobora gutera ubumuga buri hagati y’ibipimo n’ibipimo bikomeye. Urugero, intege nke z’imitsi, kubura uburyo bwo kugenzura uruhago cyangwa amara, cyangwa ubumuga . Ariko, abana bafite iyi ndwara bamanura uruti rw’umugongo mu gihe gito bagaragaza ibimenyetso bike ugereranyije n’abana bafite iyi ndwara mu gihe cyo hejuru mu ruti rw’umugongo.

Ubusembwa bw'imiyoboro y'ubwonko ni iki?

Ubusembwa bw'imiyoboro y'ubwonko (NTDs) ni ubusembwa bw'ubwonko, uruti rw'umugongo, cyangwa uruti rw'umugongo. Bukunze kubaho mu kwezi kwa mbere utwite - rimwe na rimwe mbere yuko umenya ko utwite. Ubwoko bubiri bw'ingenzi bw'ubusembwa bw'imiyoboro y'ubwonko ni spina bifida na anencephaly.

Ibi ni byo bikunze kubaho: Mu kwezi kwa mbere gutwita, impande ebyiri z'umugongo w'umwana uri mu nda zirahuza zigakora igipfundikizo cy'umugongo, imitsi yo mu ruti rw'umugongo, na meninges (ingingo itwikira umugongo). Muri iki gihe, ubwonko n'umugongo w'umwana uri mu nda bikura byitwa umuyoboro w'ubwonko.

Rero, iyo habayeho ikosa cyangwa ikibazo mu ikorwa ry'uyu muyoboro w'imitsi, byitwa inenge y'umuyoboro w'imitsi.

Ni irihe tandukaniro riri hagati ya Spina Bifida na Myelomeningocele?

'Spine Bifida' yerekeza ku busembwa ubwo aribwo bwose umuntu avukana aho umuyoboro w'imitsi ukikije uruti rw'umugongo udafunga neza.

Uruti rw'umugongo rushobora kugaragara ahantu hose ku ruti rw'umugongo rw'umwana, nk'uko byavuzwe mbere, iyo umuyoboro w'imitsi udafunze neza mu nda. Iyo ibi bibaye, uruti rw'umugongo, rurinda uruti rw'umugongo, ntirufunze neza. Ibi bishobora kwangiza uruti rw'umugongo rw'umwana n'imitsi ye.

Myelomeningocele ni ubwoko bwa spina bifida - kandi ikaze cyane. Ni agafuka kuzuyemo amazi aturuka mu mugongo w'umwana, karimo igice cy'umugongo n'imitsi. Ubundi bwoko bwa spina bifida ni meningocele na spina bifida occulta.

Ni irihe tandukaniro riri hagati ya Meningocele na Myelomeningocele?

Myelomeningocele na meningocele byombi ni ubwoko bwa spina bifida, ariko hari itandukaniro rito.

Meningocele ni indwara aho agasabo kuzuye amazi gasohoka mu mwenge uri mu mugongo w'umwana, ariko agasabo kakaba kadafite uruti rw'umugongo rw'umwana . Ibi akenshi bitera kwangirika guke cyangwa ntibigire ingaruka ku mitsi.

Ariko muri myelomeningocele , harimo igice cy'umugongo n'imitsi biri muri ako gafuka, kandi byangiritse . Ibyo nibyo bituma birushaho kuba bibi.

Ni nde ubangamirwa na Myelomeningocele?

Myelomeningocele ishobora kugira ingaruka ku mwana uwo ari we wese uri mu nda. Nubwo abahanga mu bya siyansi batazi neza impamvu ibitera, basanze hari ibintu bimwe na bimwe bigize imiterere y’umubiri, ibidukikije, n’imirire byongera ibyago byo kurwara iyi ndwara ku mwana.

Iyi ndwara ikunze kugaragara gute?

Myelomeningocele ni indwara igaragara mu mitsi yo hagati.Indwara ikunze kugaragara cyane mu gihe umuntu avukana (ubumuga bwo kuvukana). Urugero, iyi ndwara yibasira abana bagera ku 1.645 bavuka buri mwaka muri Leta Zunze Ubumwe za Amerika. Abana nabo bavukana iyi ndwara muri Sri Lanka.

Ni ibihe bimenyetso bya Myelomeningocele?

Umwana urwaye myelomeningocele afite agasakoshi kuzuyemo amazi gaca mu mugongo kava hagati mu mugongo . Abaganga bakunze kumenya ikibazo mu gihe atwite bakoresheje ultrasound scan.

Umwana urwaye myelomeningocele ashobora no kugira ubundi busembwa avukana . Abana bagera kuri 8 kuri 10 bafite iyi ndwara nabo bafite indwara yitwa hydrocephalus, ikaba ari ukwirundanya kw'amazi mu bwonko .

Izindi ngorane z'umugongo cyangwa imitsi n'amagufwa zishobora kuba zifitanye isano na myelomeningocele zirimo:

• Syringomyelia (ikibyimba cyuzuye amazi kiri mu mugongo)
• Gucika kw'ikibuno

Ni izihe mpamvu zitera Myelomeningocele?

Abaganga n'abahanga mu bya siyansi ntibaramenya neza impamvu nyayo ya myelomeningocele, ariko bizera ko ari indwara ikomeye iterwa n'uruvange rw'ibintu bigize imiterere y'umubiri, imirire, n'ibidukikije .

By’umwihariko, byagaragaye ko urugero ruto rwa aside folike mu mubiri w’umubyeyi mbere no mu gihe atwite rugira uruhare mu gutuma habaho ubu busembwa bw’umwana avuka. Aside folike (izwi kandi ku izina rya folate) ni ingenzi mu iterambere ry’ubwonko n’uruti rw’umugongo by’umwana uri mu nda.

Ni gute Myelomeningocele ipimwa mbere yuko umwana avuka?

Akenshi (ariko si buri gihe) abaganga bashobora gusuzuma myelomeningocele mu mwana uri mu nda igihe atwite. Bakoresha ibi bipimo:

• Isuzuma ry'amaraso: Muganga wawe azagutegeka ko upima amaraso hagati y'ibyumweru 16 na 18 utwite, agapima ikintu cyitwa alpha-fetoprotein (AFP). Abagore batwite bagera kuri 75% kugeza kuri 80% batwite bafite umwana ufite spina bifida bafite ingano iri hejuru y'iyi AFP isanzwe. Niba urwego rwawe narwo ruri hejuru, muganga wawe azagutegeka ko usuzuma andi masuzuma, nka ultrasound scan, kugira ngo barusheho gusuzuma umwana.
• Ultrasound yo mu gihe cyo kubyara: Gupima umwana utwite hakoreshejwe ultrasound ni bwo buryo bwiza bwo gusuzuma myelomeningocele. Abaganga bakunze gutanga inama yo gusuzuma ultrasound mu gihembwe cya mbere (ibyumweru 11-14) no mu gihembwe cya kabiri (ibyumweru 18-22). Gupima umwana utwite hakoreshejwe ultrasound bishobora gusuzuma neza ikibazo.
• Ikizamini cya amniocentesis:Iyo isuzuma rya ultrasound ry’umwana uri mu nda ryemeza ko myelomeningocele yanduye, muganga wawe ashobora kukugira inama yo gupima amniocentesis. Ibi bikorwa kugira ngo harebwe niba hari indwara zidasanzwe ziterwa na myelomeningocele. Ibi bisaba ko muganga akoresha urushinge kugira ngo afate icyitegererezo cy’amazi ava mu gafuka k’umwana uri mu nda. Hari ingaruka zimwe na zimwe muri iki kizamini, bityo ni ngombwa kubiganiraho na muganga wawe.

Iyo bitagaragaye mu gihe cyo gutwita, myelomeningocele irasuzumwa nyuma y'uko umwana avutse hakoreshejwe ibizamini byo gufata amashusho nka MRI (Magnetic Resonance Imaging) cyangwa CT (Computed Tomography).

Ni ubuhe buryo bwo kuvura Myelomeningocele?

Uburyo busanzwe bwo kuvura myelomeningocele ni ukubaga kugira ngo hafunge umwenge uri mu ruti rw'umugongo rw'umwana .

Abaganga bashobora kubaga umwana mbere yuko avuka (kubaga umwana uri mu nda) cyangwa nyuma gato yo kuvuka (kubaga nyuma yo kubyara) .

Kubera ko abana bafite myelomeningocele bakunze kugira hydrocephalus (amazi yiyongera ku bwonko), shunt ya ventriculoperitoneal (VP) ishobora no gukenerwa kugira ngo amazi arenze mu bwonko bw'umwana akurwe.

Abana benshi bazakenera kuvurwa ubuzima bwabo bwose kugira ngo bakemure ibibazo biterwa no kwangirika k'umugongo wabo n'imitsi. Uburyo busanzwe bwo kuvura burimo imiti yica udukoko nka meningite (indwara zo mu bwonko) cyangwa indwara zo mu nzira y'inkari (UTI) hamwe n'ubuvuzi bw'umubiri.

Kubaga myelomeningocele mu mwana uri mu nda

Kubaga umwana uri mu nda ni amahitamo ashobora gutorwa bitewe n'uburemere bwa myelomeningocele n'ubuzima bw'umubyeyi utwite. Ubwo bwoko bw'ububaji burimo kwiyongera cyane.

Nubwo ubu buvuzi bushobora gukumira ibimenyetso birushaho kwiyongera, ntibushobora gukosora ibyangiritse byamaze gukorwa ku ruti rw'umugongo cyangwa imitsi .

Icy'ingenzi: Hari ingorane zijyanye n'ubu buryo bwo kubaga umwana uri mu nda, nko kwiyongera k'ibyago byo kubyara igihe kitageze no gutakaza ububobere mu nda.

Kubaga myelomeningocele nyuma yo kubyara

Niba umwana wawe atarabazwe umwana uri mu nda kugira ngo asane umugongo, agomba kubagwa vuba bishoboka nyuma yo kuvuka - byaba byiza mu masaha 48 ya mbere yo kuvuka - kugira ngo agabanye ibyago byo kwandura.

Ni abahe baganga umwana wanjye ufite myelomeningocele agomba kubonana na bo?

Abana benshi bafite myelomeningocele bungukirwa n'inkunga y'itsinda ry'abantu benshi kugira ngo bahuze ubuvuzi bwabo n'imicungire yabo. Impuguke zishobora kuba zifite uruhare mu kwita ku mwana wawe zirimo:

• Inzobere mu ndwara z'imitsi
• Umuganga w'indwara z'ubwonko
• Umuganga w'inzobere mu kubaga umwana ukiri mu nda
• Umuganga w'inkari
• Umuganga w'amagufwa
• Inzobere mu by'uruhu
• Umuganga w'umubiri

Ni ibihe bintu bishobora gutera myelomeningocele?

Ikibabaje ni uko ubusembwa bw'abana bavukana nka myelomeningocele budashobora kwirindwa burundu - ibyago bishobora kugabanuka gusa . Akenshi, iyi ndwara ibaho rimwe na rimwe. Ariko abahanga mu bya siyansi bagaragaje ibintu byinshi bishobora gutera iyi ndwara. Ibyo ni ibi bikurikira:

• Kubura folate (aside folic): Folate, ubwoko karemano bwa vitamine B9, ni ingenzi cyane kugira ngo umwana akure neza. Kubura folate byongera ibyago byo kurwara spina bifida n'izindi ndwara zo mu miyoboro y'ubwonko (NTDs). Niba utwite cyangwa uteganya gutwita, ni ngombwa gufata vitamine zo mu gihe cyo kubyara kugira ngo umenye neza ko ubona folate (aside folic) n'izindi ntungamubiri ukeneye kugira ngo utwite neza.
• Amateka y’imiryango y’abafite ubumuga bw’imiyoboro y’ubwonko: Abantu babyaye umwana umwe ufite ubumuga bw’imiyoboro y’ubwonko bafite ibyago byiyongeraho 3% byo kubyara undi mwana ufite ubwo bumuga. Nanone, abagore barwaye ubumuga bw’imiyoboro y’ubwonko (NTD) bafite amahirwe menshi yo kubyara umwana ufite myelomeningocele kurusha abadafite ubwo bumuga. Ariko, abana benshi bafite myelomeningocele bavuka ku babyeyi badafite amateka y’ubwo bumuga mu muryango.
• Imiti igabanya ubukana bw'indwara zo mu mutwe: Hari imiti imwe n'imwe igabanya ubukana bw'indwara zo mu mutwe iyo ifashwe mu gihe cyo gutwita yagaragaye ko ifitanye isano n'ibyago byo kurwara indwara zo mu miyoboro y'ubwonko.
• Diyabete: Abagore batwite bafite diyabete idagenzuwe neza bafite ibyago byinshi byo kubyara umwana ufite myelomeningocele.
• Umubyibuho ukabije: Abagore bafite umubyibuho ukabije mbere yo gutwita bafite ibyago byinshi byo kubyara umwana ufite ikibazo cy’imiyoboro y’ubwonko, harimo na myelomeningocele.
• Ubwiyongere bw'ubushyuhe bw'umubiri:Byagaragaye ko kwiyongera k'ubushyuhe bw'umubiri (hyperthermia) mu byumweru bya mbere byo gutwita, byaba biterwa n'umuriro udashira cyangwa gukoresha sauna cyangwa hot tub, byongera gato ibyago byo kurwara myelomeningocele.

Wibuke ko kubyara umwana ufite myelomeningocele atari ikosa ryawe. Abantu bose bageze mu kigero cyo kubyara bashobora gutwita bitewe n'ubumuga bavukanye.

Ni iki giteganyijwe ku ndwara ya myelomeningocele?

Nta bantu babiri barwaye myelomeningocele barwara kimwe. Isuzuma ry'uko iyi ndwara izabaho riterwa n'ibintu byinshi. Muri byo harimo:

• Imiterere y'umwimerere y'umugongo wabo n'imitsi yabo.
• Uko umwanya uri hejuru cyangwa hasi mu mugongo.
• Ese icyo gikapu kirafunguye cyangwa gifunze?
• Niba barabazwe mbere cyangwa nyuma yo kubyara.

Igipimo cy'impfu ku bantu barwaye spina bifida kiri hagati ya 1% ku mwaka hagati y'imyaka 5 na 30. Uko igisebe cy'umugongo kirushaho kuba kinini, niko ibyago byo kugira ibibazo n'urupfu byiyongera.

Ingaruka mbi n'ingorane za myelomeningocele bishobora kugira ingaruka zikomeye ku mibereho y'abantu. Abantu bafite iyi ndwara bashobora kugira ihungabana, guhangayika, no kugira imyitwarire yo kwishyira mu kaga .

Ni izihe ngorane za myelomeningocele?

Ingorane zijyanye na myelomeningocele ni izi:

• Kurema cyangwa kubura ibyiyumvo mu bice by'umubiri biri munsi y'agasabo kuzuyemo amazi (ikibyimba).
• Kugabanuka k'ubushobozi bwo kugenda bitewe n'intege nke z'imitsi.
• Ibibazo by'amagufwa bifitanye isano no kurwara ubumuga , urugero nko kurwara amaguru n'amaboko, gucika kw'umugongo, no gucika kw'ikibuno.
• Kubura uburyo bwo kugenzura uruhago n'amara.
• Kugaragara kenshi kw'indwara zo mu nzira y'inkari (UTI).
• Meningite (ubwandu bw'ubwonko).
• Allergie ya latex.
• Itandukaniro mu myigire cyangwa gutinda mu mikurire (ubumuga bwo gutekereza).
• Indwara y'igicuri `(Indwara zo mu mutwe)`.

Ni gute nakwita ku mwana wanjye ufite myelomeningocele?

Ikintu cy'ingenzi ugomba kwibuka ni uko nta bantu babiri bafite myelomeningocele barwara kimwe. Nta buryo bwo kumenya neza uko umwana wawe azarwara. Ikintu cyiza wakora ni ukuganira n'umuganga w'inzobere mu gukora ubushakashatsi no kuvura spina bifida na myelomeningocele.

Uko umwana wawe akura, itsinda ry'abaganga b'inzobere rizamufasha kwita ku byo akeneye.Ashobora kuba ingirakamaro.

Ni ryari nkwiye kuvugana na muganga w'umwana wanjye ku bijyanye n'indwara ya myelomeningocele?

Niba umwana wawe avukanye myelomeningocele, azakenera kujya kwa muganga we - cyangwa itsinda ry'abaganga - buri gihe mu buzima bwe bwose.

By'umwihariko, ni ingenzi cyane kuvugana na muganga w'umwana wawe kubera izi mpamvu:

• Niba umwana wawe yatinze cyane gutangira kugenda cyangwa yatinze cyane gutangira kunyara.
• Niba umwana wawe afite ibimenyetso bya hydrocephalus, urugero, ahantu horoshye ku gahanga, kurakara, gusinzira cyane, no kugorwa no kurya.
• Niba umwana wawe afite ibimenyetso bya meningite, ashobora kugira umuriro, ijosi rigakomera, kurakara, no kurira cyane.

Ni ibihe bibazo ngomba kubaza muganga wanjye ku bijyanye n'indwara ya myelomeningocele?

Niba muganga wawe akeka ko afite myelomeningocele, byaba byiza kukubaza ibi bibazo:

• Ni iki nakora kugira ngo nkomeze kugira ubuzima bwiza mu gihe cyose ntwite?
• Ese ushobora gutanga inama ku baganga n'inzobere binzobere mu kuvura indwara ya Spina Bifida na Myelomeningocele?
• Ni ubuhe buryo bwo kuvura myelomeningocele?
• Ni izihe ngaruka n'inyungu zo kubaga umwana ukiri mu nda no kubaga umwana nyuma yo kubyara?
• Ese ndi mu kaga ko kubyara undi mwana ufite myelomeningocele?
• Ese ufite amakuru yerekeye amatsinda yo gufasha abantu bafite myelomeningocele n'ababyeyi b'abana nk'abo?

Kumenya ko umwana wawe afite ikibazo gikomeye cy’uburwayi bishobora kugutera ubwoba. Ariko ibuka ko utari wenyine - hari uburyo bwinshi bwo kugufasha wowe n’umuryango wawe. Ni ngombwa kuvugana n’umuganga uzi ibijyanye na myelomeningocele kugira ngo umenye byinshi ku ngaruka igira ku mwana wawe n’uko wayitegura.

Ubutumwa bwo kujyana mu rugo buturutse kuri twe

Myelomeningocele ni ikibazo gikomeye cyane mu gihe umuntu avukana. Ariko iyo uhawe ubuvuzi bukwiye, inkunga n'urukundo, aba bana bashobora kubaho ubuzima bwiza . Ni ngombwa kumenya iki kibazo mu mwana uri mu nda no gushaka ubuvuzi bwihuse. Gufata ingamba nko kubona aside folike ihagije nabyo bishobora kugabanya ibyago byo kurwara iki kibazo. Niba ufite ibindi bibazo kuri iki kibazo, ntutindiganye kuvugana na muganga wawe.

Myelomeningocele , spina bifida, ubusembwa bw'ivuka, ubusembwa bw'imiyoboro y'ubwonko, uruti rw'umugongo, ubuzima bw'umwana, gutwita