Namuhla sizokhuluma ngesihloko esibucayi, futhi esithusa abazali abaningi. Leso yisifo sokuzalwa esibizwa ngokuthi i-Anencephaly. Kungenzeka ukuthi awukaze uzwe ngaleli gama. Kodwa-ke, kubaluleke kakhulu ukuthi noma ubani olindele umntwana omusha aqaphele lokhu. Ukufunda lokhu kungakwenza uzizwe udangele futhi wesaba. Kodwa sikhuluma ngalokhu ukuze sikufundise, hhayi ukuze sikuthuse. Ngakho-ke ake sixoxe ngalokhu ngokuningiliziwe nangokulula.
Kalula nje, iyini i-Anencephaly?
I-Anencephaly iyisifo esibi kakhulu, esizalwa naso (esikhona ngesikhathi sokuzalwa) . Kalula nje, kulesi simo, umntwana uzalwa engenazo izingxenye ezibalulekile zobuchopho kanye nogebhezi. Lesi yisimo esidabukisayo kakhulu.
Ubuchopho bulawula yonke imisebenzi emizimbeni yethu. Kusukela ekuphefumuleni kuya ekucabangeni nasekuzizweni, ubuchopho bubalulekile kukho konke. Ngakho-ke, ngenxa yokuthi izingxenye zobuchopho azakheki kahle, umntwana ozelwe ene-Anencephaly unethuba elincane kakhulu lokusinda. Esikhathini esiningi, ukukhulelwa okunjalo kugcina ngokuphuphuma kwesisu noma ukuzalwa kwengane isishonile. Ngisho noma bezalwa, labo bantwana baphila imizuzu embalwa, amahora ambalwa, noma izinsuku ezimbalwa kuphela.
Kwenzeka kanjani lokhu? Iyini ithubhu yemizwa?
Ukuze siqonde lokhu, sidinga ukubuyela emuva emasontweni ambalwa okuqala okukhula komntwana. Cabanga ngakho, phakathi namasonto ambalwa okuqala okukhula komntwana, ikakhulukazi phakathi kwamasonto esithathu nelesine okukhulelwa , uhlelo lwezinzwa lomntwana luqala ukwakheka. Luqala njengengcezu yezicubu ezisicaba. Lesi zicubu bese sigoqeka bese sakha isimo esifana nesethubhu. Lokhu sikubiza ngokuthi ithubhu yemizwa .
Le tube yemizwa iyisisekelo salo lonke uhlelo lwemizwa lomntwana.
- Ubuchopho kanye nogebhezi kwakheka engxenyeni engenhla yepayipi .
- Intambo yomgogodla ikhula kusukela engxenyeni ephakathi yepayipi .
- Ingxenye engezansi yepayipi yakha umgogodla.
I-Anencephaly yenzeka lapho ingxenye ephezulu ye-neural tube ingavali kahle . Lokhu kusho ukuthi ubuchopho kanye ne-skull azivali kahle lapho kufanele khona. Ngenxa yalokho, izingxenye ezibalulekile zobuchopho bomntwana, njenge-forebrain kanye ne-cerebrum, azikhuli. Nakuba ezinye izingxenye zobuchopho zakha, zingaphandle, azimboziwe yi-skull noma isikhumba. Sivame ukubiza lezi zinhlobo zokukhubazeka ngokuthi ama-Neural Tube Defects (NTDs) .
Ingabe zikhona izinhlobo eziyinhloko ze-anencephaly?
Yebo, kunezinhlobo ezintathu eziyinhloko ze-anencephaly. Zonke izinhlobo ezintathu ziyingozi embungwini.
- I-Meroanencephaly: Kulolu hlobo, izingxenye ze-brainstem kanye ne-midbrain zikhula kancane. Ubuchopho bungase futhi bungambozwa yisikhumba kanye nezingxenye zekhanda.
- I-Holoanencephaly:Lolu uhlobo oluvame kakhulu lwesimo se-anencephaly. Kulesi simo, ubuchopho abukhuli nhlobo.
- I-Craniorachischisis: Lolu uhlobo olubi kakhulu. Kulesi simo, ubuchopho, ugebhezi, kanye nomgogodla akukhuli nhlobo.
Ukufunda ngalesi simo kungaba buhlungu kakhulu kubazali. Kodwa ukuqaphela izinto ezinjengalezi kungakusiza ukuthi uthathe izinyathelo zokuphepha ngesikhathi sokukhulelwa.
Sivame kangakanani lesi simo? Yiziphi izimpawu ezingabonakala ngesikhathi sokukhulelwa?
I-Anencephaly iyinkinga evamile ye-neural tube. Izifundo zisikisela ukuthi iyenzeka cishe koyedwa kwabayi-1,000 abakhulelwe. Kodwa-ke, njengoba sishilo ngaphambili, ngenxa yokuthi iningi lalaba bakhulelwe ligcina ngokuphuphuma kwesisu, inani langempela lezingane ezizalwa nalesi simo liphansi kakhulu.
Lesi simo singatholakala kusenesikhathi ngokuhlolwa okwenziwa ngesikhathi sokukhulelwa. Kunezimpawu eziningana ezingakhomba lokhu.
| Uphawu | Incazelo elula |
|---|---|
| Amazinga aphezulu e-alpha-fetoprotein (AFP) | Lena iphrotheni ekhiqizwa yisibindi somntwana. Ezimweni ezifana ne-anencephaly, le phrotheni ivuza kakhulu egazini likamama kanye noketshezi lwe-amniotic oluzungeze umntwana. Lokhu kungatholakala ngokuhlolwa kwegazi okwenziwe ku-trimester yesibili yokukhulelwa. |
| Ama-Polyhydramnios | Uma inani le-amniotic fluid elizungeze ingane liphezulu kakhulu, kungaba uphawu lwenkinga. Udokotela angakubona lokhu ngesikhathi sokuhlolwa kwe-ultrasound. |
| Izinto ezingavamile ezibonwe kuskeni | Ukuskena kungabonisa ngokusobala ukuthi izingxenye zogebhezi lobuchopho bomntwana azikho noma azibonakali ngaphandle kwezicubu zobuchopho ezizimbozile. Ikhanda lomntwana nalo lingase libe lincane kakhulu kunalokho obekulindelekile. |
Yiziphi izimpawu zalesi simo enganeni esanda kuzalwa?
Lokhu kunzima kakhulu ukukhuluma ngakho. Ngenxa yokuthi ingane ezelwe ine-anencephaly ayinazo izingxenye ezinkulu zobuchopho, ayinalo ulwazi noma ulwazi nganoma yini.
Lokho kusho ukuthi,
- Abakwazi ukubona .
- Abazwa .
- Abazizwa ubuhlungu .
Ngezinye izikhathi, uma i-brainstem yengane isikhule ngokugcwele, ingane ingaba nokusabela okuthile. Lokhu kusho ukuthi ingase ishaqeke kancane uma uyithinta. Lokhu kungabaqinisekisa kakhulu abazali. Kodwa-ke, sidinga ukuqonda ukuthi lokhu akusho ukuthi ingane iyazi, ukuthi ingakuzwa, noma ukuthi ingaphila isikhathi eside. Kuyinto nje eyenzeka ngokuzenzakalelayo.
Yiziphi izimbangela kanye nezici eziyingozi ze-anencephaly?
Kunzima ukukhomba imbangela eyodwa yalesi simo. Kukholelwa ukuthi sivame ukubangelwa yinhlanganisela yezici zofuzo kanye nezemvelo.
Ingabe lokhu kuyinto evela ezizukulwaneni ngezizukulwane?
I-Anencephaly ayivamile ukutholwa njengefa. Ezimweni eziningi, ibangelwa ukuguquka kwezakhi zofuzo okungahleliwe, okungenawo umlando womndeni.
Kodwa-ke, uma uke waba nengane enenkinga ye-neural tube (isib. i-spina bifida) , ingozi yakho yokuba nenye ingane enenkinga efanayo iphakeme ngokuphindwe ka-20 kunomuntu ojwayelekile.
| Isici Sengozi | Incazelo |
|---|---|
| Ukuntuleka kwe-Folic Acid | Lesi yisici esiyinhloko nesingavinjelwa kakhulu sengozi. Ukungatholi i-folic acid (i-vitamin B9) eyanele ngaphambi nangesikhathi sokukhulelwa kwandisa kakhulu ingozi yokukhubazeka kwe-neural tube. |
| Isifo sikashukela | Uma umama enesifo sikashukela futhi engalawuli amazinga kashukela egazini lakhe ngesikhathi sokukhulelwa, kungathinta ingane ekhula futhi kwandise ingozi yalezi zinkinga. |
| Eminye imithi | Eminye imithi esetshenziselwa ukwelapha ukuxhuzula, i-migraines, noma i-bipolar disorder (isb., i-phenytoin, i-carbamazepine, i-valproic acid) ingandisa le ngozi. Uma uhlela ukukhulelwa, kubalulekile ukukhuluma nodokotela wakho ngayo yonke imithi oyithathayo. Ungalokothi uyeke ukuthatha noma yimuphi umuthi ngaphandle kokubuza udokotela wakho kuqala. |
| Ukusetshenziswa kwe-opioid | Ukusetshenziswa kwezidakamizwa ezifana ne-heroin noma ezinye izidakamizwa zokunciphisa ubuhlungu ezinikezwa ngudokotela (isib. i-hydrocodone) phakathi nezinyanga ezimbili zokuqala zokukhulelwa nakho kungabangela ukukhubazeka kwe-neural tube. |
Ungasithola kanjani lesi simo ngesikhathi sokukhulelwa?
Ngobuchwepheshe bamanje, i-anencephaly ingatholakala ngokunemba okuphezulu ngokuhlolwa kokukhulelwa. Lokhu kuhlolwa kuvame ukwenziwa phakathi kwamasonto ayi-18-20 okukhulelwa.
- Isikrini Sokumaka Okune: Lokhu ukuhlolwa okwenziwa kusampula yegazi elithathwe kumama. Kuhlola izinto ezine egazini likamama. Lokhu kuhlolwa kuhlola nezinga le-alpha-fetoprotein (AFP) esikhulume ngalo ngaphambili. Uma izinga le-AFP liphezulu kakhulu, kuyisibonakaliso sokukhubazeka kwe-neural tube.
- I-Ultrasound: Lokhu kuyinto abantu abaningi abajwayelene nayo. Isebenzisa amaza omsindo ukuthatha izithombe zomntwana. Lapha, udokotela angahlola ukukhula kogebhezi lomntwana, ubuchopho bakhe, kanye nomgogodla wakhe. I-Anencephaly ingabonakala ngokucacile ngalesi sikeni.
- Ukuskena kwe-MRI yengane esanda kuzalwa: Ngezinye izikhathi, uma kudingeka ukuqinisekiswa okwengeziwe, udokotela angase akuthumelele ukuskena kwe-MRI. Lokhu kungaveza izithombe ezicacile nezinemininingwane eminingi zobuchopho nomgogodla.
- I-Amniocentesis: Kulolu vivinyo, kufakwa inalithi encane kakhulu esibelethweni bese kuthathwa isampula encane yoketshezi lwe-amniotic oluzungeze umntwana. Uketshezi luhlolwa amazinga e-enzyme ebizwa ngokuthi i-AFP kanye ne-acetylcholinesterase. Uma la mazinga ephezulu, kuwuphawu oluqinile lokukhubazeka kwe-neural tube.
Iyini indlela yokwelapha kanye nombono?
Lokhu kuyadabukisa ngempela. Okwamanje akukho ukwelashwa noma ikhambi le-anencephaly, njengoba ubuchopho bungakwazi ukuvuselela uma sebulahlekile.
Lesi simo siyabulala. Kusho ukuthi ingane ayinalo ithuba lokusinda. Esikhathini esiningi, umbungu ufela esibelethweni. Ngisho noma uzalwa, uyafa zingakapheli amahora noma izinsuku ezimbalwa. Lokhu kubuhlungu obungabekezeleleki kubazali. Ngesikhathi esinjengalesi, odokotela bakho, abahlengikazi, kanye nabanye abasebenzi bezokwelapha bazokunikeza wena nomndeni wakho ukwesekwa kwengqondo okudingekayo futhi bakusize ubhekane nalolu sizi.
Yini esingayenza ukuze sivimbele lolu hlobo lwesimo?
Nakuba isimo esifana ne-anencephaly singenakuvinjelwa ngokuphelele, kunezinto eziningana esingazenza ukuze sinciphise kakhulu ingozi .
- Ukuthola i-folic acid eyanele: Lena yinto ebaluleke kakhulu. Wonke owesifazane ohlela ukuba nomntwana kufanele aqale ukuthatha ama-400 mcg (ama-microgram) e-folic acid nsuku zonke okungenani inyanga ngaphambi kokukhulelwa. Ukukhubazeka kwe-neural tube kwenzeka phakathi nenyanga yokuqala yokukhulelwa, ngaphambi kokuthi wazi nokuthi ukhulelwe. Yingakho kubalulekile ukuqala ukuthatha i-folic acid kusenesikhathi. Uma uke waba nomntwana one-neural tube defect ngaphambili, udokotela wakho angase akuncome umthamo ophezulu.
- Ukukhuluma nodokotela wakho ngemithi oyithathayo: Uma uhlela ukuba nomntwana, tshela udokotela wakho ngayo yonke imithi oyithathayo njengamanje. Eminye imithi ingaba yingozi embungwini, ngakho udokotela wakho angancoma ezinye izindlela ezifanele.
- Ukuphatha izimo zakho zempilo: Uma unesinye isimo sezokwelapha, njengesifo sikashukela, qiniseka ukuthi silawulwa kahle ngaphambi kokuba ukhulelwe. Khuluma nodokotela wakho ukuze uthole iseluleko.
Ubhekana kanjani nosizi lokulahlekelwa ingane?
Ukuthola ukuthi ingane yakho ine-Anencephaly kungaba ngenye yezinto ezibuhlungu kakhulu umzali angabhekana nazo. Kubuhlungu obungaphezu kwamandla. Kuvamile ukuzizwa unemizwa eyahlukahlukene ngalesi sikhathi, okuhlanganisa ukudabuka, intukuthelo, ukuphelelwa yithemba kanye nomuzwa wecala.
Into ebaluleke kakhulu ukuqonda ukuthi lokhu akulona iphutha lakho. Ungazizwa kabi ngalokho ngenxa yento oyenzile noma ongayenzanga.
Ungazami ukuthwala lolu sizi wedwa.
- Khuluma ngemizwa yakho nomyeni/umkakho, umndeni, kanye nabangani othembekile.
- Abasebenzi bezokwelapha bazokunikeza ukwesekwa okudingayo. Bangase bakuthumele kuchwepheshe wezempilo yengqondo noma eqenjini lokusekelana nabanye abazali abake badlula kokuhlangenwe nakho okufanayo.
- Kuzothatha isikhathi ukululama kulolu sizi. Zivumele ubhekane nalokhu ngesivinini sakho.
Ngisho noma wenza konke udokotela wakho akutshela ukuthi ukwenze ukuze ukhulelwe kahle, ngezinye izikhathi lezi ziphazamiso ezinkulu zokuzalwa zingenzeka. Lelo iqiniso elibuhlungu. I-Anencephaly iyisifo esibuhlungu ngempela. Kodwa awuwedwa kulolu hambo. Unganqikazi ukuthola ukwesekwa okudingayo.
Umlayezo Wokuya Nawe Ekhaya
- I-Anencephaly isifo esibi kakhulu nesibulalayo sokuzalwa esenzeka lapho ubuchopho bomntwana kanye nogebhezi kungakhuli kahle.
- Lokhu kuwela ngaphansi kwesigaba se-Neural Tube Defect (NTD).
- Ukuthatha i-folic acid ngaphambi kokukhulelwa kanye nangesikhathi sokukhulelwa kusenesikhathi kuyindlela engcono kakhulu yokunciphisa le ngozi.
- Uma unesifo esifana nesifo sikashukela noma isifo sokuwa, noma uphuza imithi yaso, qiniseka ukuthi uxoxa ngaso nodokotela wakho ngaphambi kokukhulelwa umntwana.
- Uma wena noma ingane yakho nithola lokhu kutholakala, qondani ukuthi akulona iphutha lenu. Unganqikazi ukufuna usizo eqenjini lezokwelapha, emndenini, kanye nochwepheshe bezempilo yengqondo ukuze bakusize ubhekane nalolu sizi.
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