Ingaba umqolo womntwana yingxaki yokuzalwa? Masithethe nge-myelomeningocele!

Hayi indlela ekumnandi ngayo ukucinga ngomntwana wakho osesiswini sakho! Kodwa ngamanye amaxesha, abantwana bethu bafika kweli hlabathi beneengxaki zempilo ezingalindelekanga. Namhlanje, siza kuthetha ngesiphene esinzima sokuzalwa esenzeka ngexesha lokukhula komqolo, okanye umqolo, ngelixa umntwana esesesibelekweni. Oku kubizwa ngokuba yi-myelomeningocele. Usenokuba ukhe weva ngayo ngokuthi "i-Open Spina Bifida". Le yimeko apho umqolo womntwana, okanye umqolo, ungavaleki kakuhle.

Yintoni kanye kanye i-myelomeningocele?

Ngamafutshane, i-myelomeningocele sisifo sokuzalwa apho umqolo womntwana wakho kunye nomjelo womgogodla zingavaleki ngokupheleleyo ngaphambi kokuzalwa, esibelekweni. Olu luhlobo lwesifo se-neural tube defect (NTD). Usenokuba nobunzima bokubiza eli gama, akunjalo? Libizwa ngokuthi 'my-e-lo-men-in-go-ceil'.

I-Myelomeningocele yenzeka kwiiveki ezine zokuqala zokukhulelwa. Oku kwenzeka xa umbhobho we-neural womntwana ungavaleki kakuhle, nto leyo ebangela ukuba ingxowa egcwele ulwelo iphume ngasemva komqolo womntwana. Ngokukodwa, ingxowa inokuba ne:

• Inxalenye yomqolo wabo
• I-Meninges - izicubu ezigubungela umqolo wazo
• Imiva
• Ulwelo lweCerebrospinal (CSF) lulwelo olubalulekileyo olufumaneka engqondweni nasemgogodleni.

I-Myelomeningocele inokwenzeka naphi na emqolweni womntwana, kodwa idla ngokubonakala kumqolo ongezantsi (kwiindawo ze-lumbar nakwi-sacral) , oko kukuthi, kwindawo yesinqe.

Into ebuhlungu kukuba umqolo kunye nemithambo-luvo engaphakathi kwesingxobo yonakele. Oku kudla ngokubangela ubuthathaka okanye ukuphelelwa zimvakalelo kwiindawo zomzimba ezingaphantsi kwesingxobo . Kwezinye iimeko, isingxobo sinokuqhekeka. Oku kunokwenzeka ngenxa yokunyakaza okuqhelekileyo komntwana ngelixa esesibelekweni, okanye kunokwenzeka ekuzalweni.

I-Myelomeningocele lolona hlobo lubi kakhulu lwe-spina bifida, kwaye inokubangela ukukhubazeka okuphakathi ukuya kokukhulu. Umzekelo, ubuthathaka bemisipha, ukulahlekelwa kulawulo lwesinyi okanye amathumbu, kunye/okanye ukukhubazeka . Nangona kunjalo, abantwana abanale meko badla ngokuba neempawu ezimbalwa kuneentsana ezinele meko phezulu kumqolo.

Yintoni i-neural tube defect?

Iingxaki zeMibhobho yeNyelo (ii-NTD) ziziphene zokuzalwa (iimeko zokuzalwa) zobuchopho, umqolo, okanye umqolo. Zihlala zisenzeka kwinyanga yokuqala yokukhulelwa - ngamanye amaxesha ngaphambi kokuba wazi nokuba ukhulelwe. Iintlobo ezimbini eziphambili zeziphene zemibhobho yenelo yi-spina bifida kunye ne-anencephaly.

Oku kuqhele ukwenzeka: Kwinyanga yokuqala yokukhulelwa, amacala amabini omqolo womntwana adibana ukuze enze isigqubuthelo sokukhusela umqolo, imithambo-luvo yomgogodla, kunye ne-meninges (izicubu ezigubungela umqolo). Kule ndawo, ingqondo ekhulayo kunye nomqolo womntwana ongekazalwa zibizwa ngokuba yi-neural tube.

Ngoko ke, ukuba kukho impazamo okanye ingxaki ekwakhiweni kwale tyhubhu ye-neural, ibizwa ngokuba yi-neural tube defect.

Yintoni umahluko phakathi kwe-Spin Bifida kunye ne-Myelomeningocele?

I-'Spina Bifida' ibhekisa kuyo nayiphi na ingxaki yokuzalwa apho umbhobho wemithambo-luvo ojikeleze umqolo ungavali ngokupheleleyo.

I-Spine Bifida inokwenzeka naphi na emgogodleni womntwana, njengoko bekutshiwo ngaphambili, ukuba ityhubhu ye-neural ayivali ngokupheleleyo esibelekweni. Xa oku kusenzeka, intambo yomgogodla, ekhusela intambo yomgogodla, ayivali kakuhle. Oku kunokubangela umonakalo kumgogodleni womntwana kunye nemithambo-luvo yakhe.

I-Myelomeningocele luhlobo lwe-spina bifida – kwaye yeyona inzima kakhulu. Yingxowa egcwele ulwelo oluphuma emqolo womntwana, equlethe inxalenye yomqolo kunye nemithambo-luvo. Ezinye iintlobo ze-spina bifida yi-meningocele kunye ne-spina bifida occulta.

Yintoni umahluko phakathi kweMeningocele neMyelomeningocele?

I-Myelomeningocele kunye ne-meningocele zombini ziintlobo ze-spina bifida, kodwa kukho umahluko omncinci.

I-Meningocele yimeko apho ingxowa egcwele ulwelo iphuma kwindawo evulekileyo emqolo womntwana, kodwa ingxowa ayinayo intambo yomqolo yomntwana . Oku kudla ngokubangela umonakalo omncinci okanye kungabikho kwamonakalo kwimithambo-luvo.

Kodwa kwi- myelomeningocele , kukho inxalenye yomqolo kunye nemithambo-luvo ngaphakathi kweso singxobo, kwaye zonakele . Yiyo loo nto iyenza ibe mandundu.

Ngubani ochaphazeleka yiMyelomeningocele?

I-Myelomeningocele inokuchaphazela nasiphi na isibeleko. Nangona izazinzulu zingaqinisekanga ukuba yintoni ebangela oku, zichonge izinto ezithile zemfuza, ezingqongileyo, kunye nezondlo ezonyusa umngcipheko womntwana wokufumana esi sifo.

Ixhaphake kangakanani le meko?

I-Myelomeningocele yimeko eyenzeka kwinkqubo yemithambo-luvo ephakathi.Eyona meko ixhaphakileyo yokuzalwa (isiphene sokuzalwa). Umzekelo, le meko ichaphazela malunga neentsana ezili-1,645 ezizalwa minyaka le eMelika. Abantwana nabo bazalwa benesi simo eSri Lanka.

Zithini iimpawu zeMyelomeningocele?

Umntwana one-myelomeningocele unengxowa egcwele ulwelo ehla ngomqolo isuka embindini womqolo . Oogqirha badla ngokubona imeko ngexesha lokukhulelwa nge-ultrasound scan.

Umntwana one-myelomeningocele usenokuba nezinye iziphene zokuzalwa . Malunga ne-8 kwi-10 yeentsana ezinale meko nazo zinesifo esibizwa ngokuba yi-hydrocephalus, esiluqokelelo lolwelo engqondweni .

Ezinye iingxaki ze-spinal cord okanye ze-musculoskeletal system ezinokunxulunyaniswa ne-myelomeningocele ziquka:

• I-Syringomyelia (i-cyst egcwele ulwelo ngaphakathi kwintambo yomqolo)
• Ukususwa kwesinqe

Zithini izizathu zeMyelomeningocele?

Oogqirha kunye nososayensi abakayazi eyona nto ibangela i-myelomeningocele, kodwa bakholelwa ukuba yimeko enzima ebangelwa kukudibana kwezinto zemfuza, izondlo kunye neemeko ezingqongileyo .

Ngokukodwa, amanqanaba aphantsi e-folic acid emzimbeni kamama ngaphambi nangexesha lokukhulelwa abonakalisiwe ukuba anegalelo ekwenzekeni kolu hlobo lwesiphene sokuzalwa. I-folic acid (ekwaziwa ngokuba yi-folate) ibalulekile ekuphuhlisweni kwengqondo yomntwana kunye nomqolo.

Ifunyanwa njani iMyelomeningocele ngaphambi kokuba umntwana azalwe?

Amaxesha amaninzi (kodwa kungekhona rhoqo) oogqirha banokuxilonga i-myelomeningocele kumntwana ongekazalwa ngexesha lokukhulelwa. Basebenzisa ezi mvavanyo:

• Uvavanyo lwegazi: Ugqirha wakho uza kuyalela uvavanyo lwegazi phakathi kweeveki ezili-16 neli-18 zokukhulelwa olulinganisa into ebizwa ngokuba yi-alpha-fetoprotein (AFP). Malunga ne-75% ukuya kwi-80% yabasetyhini abakhulelweyo abathwele umntwana one-spina bifida banamanqanaba aphezulu kunesiqhelo e-AFP. Ukuba inqanaba lakho nalo liphezulu, ugqirha wakho uza kuyalela ezinye iimvavanyo, ezifana ne-ultrasound scan, ukuze ahlolisise umntwana ngakumbi.
• I-ultrasound yokukhulelwa kwemveku: I-ultrasound scan ngexesha lokukhulelwa yeyona ndlela ichanekileyo yokufumanisa i-myelomeningocele. Oogqirha badla ngokucebisa ii-ultrasound scans kwi-trimester yokuqala (iiveki 11-14) nakwi-trimester yesibini (iiveki 18-22). I-ultrasound yesibini inokuxilonga imeko ngokuchanekileyo.
• Uvavanyo lwe-Amniocentesis:Ukuba iskeni ye-ultrasound ye-fetal iqinisekisa i-myelomeningocele, ugqirha wakho unokucebisa uvavanyo lwe-amniocentesis. Oku kwenzelwa ukujonga iimeko ezingaqhelekanga zemfuza ezinxulumene ne-myelomeningocele. Oku kubandakanya ugqirha esebenzisa inaliti ukuthatha isampuli yolwelo oluvela kwi-amniotic sac ejikeleze usana. Kukho iingozi ezithile ngolu vavanyo, ngoko ke kubalulekile ukuxoxa ngale nto nogqirha wakho.

Ukuba ayifunyaniswanga ngexesha lokukhulelwa, i-myelomeningocele ifunyaniswa emva kokuba umntwana ezelwe kusetyenziswa iimvavanyo zomfanekiso ezifana ne-MRI (Magnetic Resonance Imaging) scan okanye i-CT (Computed Tomography) scan.

Ziziphi iindlela zonyango lweMyelomeningocele?

Unyango oluqhelekileyo lwe-myelomeningocele lutyando lokuvala umngxuma kumqolo womntwana .

Oogqirha banokwenza olu tyando ngaphambi kokuba umntwana azalwe (utyando lwe-fetal) okanye emva nje kokuzalwa (utyando lwasemva kokubeleka) .

Ngenxa yokuba iintsana ezine-myelomeningocele zihlala zine-hydrocephalus (ukwakheka kolwelo engqondweni), i-ventriculoperitoneal (VP) shunt inokufuneka ukuze kususwe ulwelo olongezelelweyo engqondweni yomntwana.

Abantwana abaninzi baya kufuna unyango lobomi bonke ukuze balawule iingxaki ezibangelwa kukonakala komqolo wabo kunye nemithambo-luvo. Unyango oluqhelekileyo luquka amayeza okubulala iintsholongwane ukuthintela usulelo olufana ne-meningitis (usulelo lobuchopho) okanye usulelo lomchamo (UTIs) kunye nonyango lomzimba.

Utyando losana olungenamntwana kwi-myelomeningocele

Utyando losana olungekazalwa lukhetho olunokukhethwa ngokuxhomekeke kubukhali be-myelomeningocele kunye nempilo kamama okhulelweyo. Olu hlobo lotyando luya luxhaphaka ngakumbi.

Nangona olu tyando lunokuthintela iimpawu ukuba zingabi zimbi, alunakulungisa umonakalo osele wenziwe kwi-spinal cord okanye kwi-nerves .

Kubalulekile: Kukho iingxaki ezinxulumene nolu tyando losana olungekazalwa, njengomngcipheko okhulayo wokuzala ngaphambi kwexesha kunye nokuphuma kwesibeleko.

Utyando emva kokubeleka lwe-myelomeningocele

Ukuba umntwana wakho akazange enziwe utyando lokulungisa i-spina bifida engekazalwa, utyando kufuneka lwenziwe ngokukhawuleza emva kokuzalwa - kungcono ukuba luqhutywe kwiiyure zokuqala ezingama-48 zokuzalwa - ukunciphisa umngcipheko wokosuleleka.

Ngoobani oogqirha ekufuneka umntwana wam one-myelomeningocele ababone?

Abantwana abaninzi abane-myelomeningocele bayazuza kwinkxaso yeqela elinamacandelo amaninzi ukuze liququzelele ukhathalelo lwabo kunye nolawulo. Iingcali ezinokuba negalelo ekunyamekeleni umntwana wakho ziquka:

• Ingcali yezifo zengqondo
• Ugqirha wezifo zengqondo
• Ugqirha wosana olungekazalwa
• Ingcali yoMchamo
• Ugqirha wamathambo
• Ingcali yesikhumba
• Ingcali yonyango lomzimba

Ziziphi izinto ezibangela umngcipheko we-myelomeningocele?

Ngelishwa, iziphene zokuzalwa ezifana ne-myelomeningocele azinakuthintelwa ngokupheleleyo - umngcipheko unokuncipha kuphela . Uninzi lwexesha, le meko yenzeka ngamaxesha athile. Kodwa izazinzulu zichonge izinto ezininzi ezinobungozi ezinxulumene nale meko. Nazi:

• Ukunqongophala kwe-folate (folic acid): I-folate, uhlobo lwendalo lwe-vitamin B9, ibalulekile ekukhuleni okunempilo kwe-fetus. Ukunqongophala kwe-folate kwandisa umngcipheko we-spina bifida kunye nezinye iziphene ze-neural tube (NTDs). Ukuba ukhulelwe okanye uceba ukukhulelwa, kubalulekile ukuthatha iivithamini zokukhulelwa ukuqinisekisa ukuba ufumana i-folate (folic acid) kunye nezinye izondlo ozidingayo ukuze ukhulelwe kakuhle.
• Imbali yosapho lweziphene ze-neural tube: Abantu abaye baba nomntwana omnye one-neural tube defect banomngcipheko ongaphezulu nge-3% wokuba nomntwana wesibini one-neural tube defect. Kwakhona, abafazi abaye baba ne-neural tube defect (NTD) banamathuba amaninzi okuba nomntwana one-myelomeningocele kunabo bangenayo le meko. Nangona kunjalo, uninzi lweentsana ezine-myelomeningocele zizalwa ngabazali abangenayo imbali yosapho yale meko.
• Amayeza okulwa nokuxhuzula: Amanye amayeza okulwa nokuxhuzula afunyenwe enxulumene nomngcipheko ophezulu weziphene zemithambo-luvo xa ethathwa ngexesha lokukhulelwa.
• Isifo seswekile: Abafazi abakhulelweyo abanesifo seswekile esingalawulekiyo basengozini enkulu yokuba nomntwana one-myelomeningocele.
• Ukutyeba kakhulu: Abafazi abatyebe kakhulu ngaphambi kokukhulelwa basengozini enkulu yokuba nomntwana one-neural tube defect, kuquka ne-myelomeningocele.
• Ubushushu bomzimba obunyukileyo:Kufunyaniswe ukuba ukunyuka kobushushu bomzimba ophakathi (i-hyperthermia) kwiiveki zokuqala zokukhulelwa, nokuba kungenxa yomkhuhlane ongapheliyo okanye ukusebenzisa i-sauna okanye i-hot tub, kuyawandisa kancinci umngcipheko we-myelomeningocele.

Khumbula, ukuba nomntwana one-myelomeningocele akulotyala lakho. Wonke umntu oneminyaka yobudala yokuzala usengozini yokukhulelwa ngenxa yesiphene sokuzalwa.

Ithini ingqikelelo ye-myelomeningocele?

Akukho bantu babini abane-myelomeningocele abachaphazeleka ngendlela efanayo. Uqikelelo lwesi sifo luxhomekeke kwizinto ezininzi. Ezi ziquka:

• Imeko yokuqala yomqolo kunye nemithambo-luvo yabo.
• Ukuba umngxuma uphezulu okanye uphantsi kangakanani emgogodleni.
• Ingaba loo bhegi ivuliwe okanye ivaliwe?
• Nokuba benze utyando ngaphambi okanye emva kokuzalwa.

Izinga lokufa kwabantu abane-spina bifida limalunga ne-1% ngonyaka phakathi kweminyaka emi-5 nengama-30. Okukhona isilonda siphezulu kwi-spinal cord, kokukhona umngcipheko weengxaki nokufa uphezulu.

Iziphumo ebezingalindelekanga kunye neengxaki ze-myelomeningocele zinokuchaphazela kakhulu umgangatho wobomi. Abantu abanale meko banamathuba amaninzi okuba noxinzelelo, ixhala, kunye nokuziphatha okuthatha umngcipheko .

Zithini iingxaki ze-myelomeningocele?

Iingxaki ezinxulumene ne-myelomeningocele zezi:

• Ukukhubazeka kunye/okanye ukulahlekelwa yimvakalelo kwiindawo zomzimba ezingaphantsi kwendawo yengxowa egcwele ulwelo (isilonda).
• Ukuncipha kokuhambahamba ngenxa yobuthathaka bemisipha.
• Iingxaki zamathambo ezinxulumene nokukhubazeka , umzekelo i-scoliosis (ukugoba komqolo), ukugoba, kunye nokuphuma kwesinqe.
• Ukulahlekelwa kulawulo lwesinyi kunye/okanye amathumbu.
• Ukuvela rhoqo kwezifo zomchamo (UTIs).
• I-Meningitis (usulelo lobuchopho).
• Ukunganyamezelani neLatex.
• Umahluko ekufundeni okanye ukulibaziseka kokukhula (ukuphazamiseka kwengqondo).
• Isifo sokuwa `(Ukuxhuzula)`.

Ndingamnyamekela njani umntwana wam one-myelomeningocele?

Eyona nto ibalulekileyo ekufuneka uyikhumbule kukuba akukho bantu babini abane-myelomeningocele abachaphazeleka ngendlela efanayo. Akukho ndlela yokwazi ngokuqinisekileyo ukuba umntwana wakho uza kuchaphazeleka njani. Eyona nto ingcono onokuyenza kukuthetha nogqirha ogxile ekuphandeni nasekunyangeni i-spina bifida kunye ne-myelomeningocele.

Njengoko umntwana wakho ekhula, iqela loogqirha abaziingcali liza kunceda ekunyamekeleni iimfuno zakhe.Unokuba luncedo.

Ndingathetha nini nogqirha womntwana wam nge-myelomeningocele?

Ukuba umntwana wakho uzelwe ene-myelomeningocele, kuya kufuneka abone ugqirha wakhe - okanye iqela loogqirha - rhoqo ebomini bakhe bonke.

Ngokukodwa, kubaluleke kakhulu ukuthetha nogqirha womntwana wakho ngezi zizathu zilandelayo:

• Ukuba umntwana wakho uphuze kakhulu ukuba aqale ukuhamba okanye uphuze kakhulu ukuba aqale ukukhasa.
• Ukuba umntwana wakho uneempawu ze-hydrocephalus, umzekelo, indawo ethambileyo ebunzini, ukucaphuka, ukozela kakhulu, kunye nobunzima bokutya.
• Ukuba umntwana wakho uneempawu ze-meningitis, usenokuba nomkhuhlane, intamo eqinileyo, ukucaphuka, kunye nokukhala kakhulu.

Yeyiphi imibuzo endifanele ndiyibuze ugqirha wam malunga ne-myelomeningocele?

Ukuba ugqirha wakho urhanela ukuba une-myelomeningocele, kunokuba luncedo ukukubuza le mibuzo:

• Ndingenza ntoni ukuze ndihlale ndisempilweni kulo lonke ixesha lokukhulelwa kwam?
• Ngaba ungacebisa oogqirha kunye neengcali ezigxile kwi-Spin Bifida kunye ne-Myelomeningocele?
• Ziziphi iindlela zonyango lwe-myelomeningocele?
• Zithini iingozi kunye neenzuzo zotyando lokulungisa umntwana ongekazalwa kunye notyando lokulungisa emva kokubeleka?
• Ngaba ndisemngciphekweni wokuba nomnye umntwana one-myelomeningocele?
• Ngaba unalo ulwazi malunga namaqela enkxaso kubantu abane-myelomeningocele kunye nabazali babantwana abanjalo?

Ukufumanisa ukuba umntwana wakho unesifo esinzulu kunokuba nzima kakhulu. Kodwa khumbula ukuba awuwedwa – zininzi izixhobo zokukunceda wena nosapho lwakho. Kubalulekile ukuthetha nogqirha onolwazi nge-myelomeningocele ukuze ufunde ngakumbi ngendlela echaphazela ngayo umntwana wakho kunye nendlela yokulungiselela.

Umyalezo Ovela Kuthi Omele Uwuthathe Ekhaya

I-Myelomeningocele sisifo esinzima kakhulu ekuzalweni. Kodwa ngonyango olufanelekileyo, inkxaso, kunye nothando, aba bantwana banokuphila ubomi obuhle . Kubalulekile ukuqaphela esi sifo kwimveku kwaye ufune unyango ngokukhawuleza. Ukuthatha amanyathelo anjengokufumana i-folic acid eyaneleyo kunokunciphisa umngcipheko wesi sifo. Ukuba unemibuzo engaphezulu malunga noku, ungathandabuzi ukuthetha nogqirha wakho.

I- Myelomeningocele, i-spinal bifida, iziphene zokuzalwa, iziphene zetyhubhu ye-neural, umqolo, impilo yomntwana, ukukhulelwa