Wi no se di big tin we una ɔl want, as mama, na fɔ bɔn pikin we gɛt wɛlbɔdi ɛn we dɔn ful-ɔp. Bɔt sɔntɛnde, prɔblɛm dɛn kin apin we wi nɔ bin ɛva imajin. Anencephaly na wan tɔpik wae rili sɛnsitiv fɔ yɛri bɔt. Dis na difεkt we dεn bכn pikin we de apin we di pikin in bren εn in sכkul nכ de divεlכp fayn. Di pen ɛn shɔk we yu kin fil we yu lan bɔt sɔntin lɛk dis, yu nɔ go ebul fɔ tɔk bɔt am. Bɔt i rili impɔtant fɔ mek yu ɔndastand dis kɔndishɔn kɔrɛkt wan ɛn simpul wan. Tide, wi go tɔk bɔt dis sik we dɛn kɔl Anencephaly.
Fɔ tɔk am simpul wan, wetin na Anɛnsɛfali?
Anɛnsɛfali na wan sik we dɛn bɔn wit we kin apin we dɛn bɔn am. pan dis kכndyushכn, sכm imכtant pat dεm na di pikin in bren εn in sכkul nכ de divεlכp. Dis na siriɔs tin we kin afɛkt di pikin in nervɔs sistɛm.
Imajin, insay di fɔs mɔnt we di pikin gɛt bɛlɛ, di pikin in bren, in skel, in spayna, ɛn in spaynal kɔd kin bigin fɔ mek. dis dεm de fכm insay wan spεshal strכkchכ we dεn kכl di 'nyural tכb'. Dis tiub nid fɔ lɔk, jɔs lɛk zip. if di kes fכ anεnsεfali, di כp pat pan dis nyural tכb, we na di say we di bren εn di sכkul de fכm, nכ de kכloz fayn fayn wan. Na dat mek dɛn kin kɔl am bak nyural tiub dɛfɛkt .
Di bren de kɔntrol ɔltin na wi layf, i de mek wi kɔntinyu fɔ liv. So i nɔ kin izi fɔ mek pikin liv if di men pat dɛn na in bren nɔ de. So, di pikin dεm we dεn bכn wit anεsεfali kin כnli liv fכ fכ minit, awa כ de dεm. Bɔku tɛm, dɛn kayn bɛlɛ dɛn de kin dɔn we uman kin kɔmɔt na bɛlɛ ɔ we dɛn kin bɔn pikin we dɔn day.
Wi no se dis na tin we rili at fɔ mek yu no. Bɔt dis nɔto yu fɔlt. Dis na kɔmplikɛshɔn we kin apin insay di fɔs wik dɛn we yu gɛt bɛlɛ, we yu nɔ kin ivin no se yu gɛt bɛlɛ.
Yu tink se men kayn anɛnsɛfali de?
Yɛs, tri men kayn anencephaly de. Ɔl di tri kayn tin dɛn kin rili afɛkt pikin in layf.
| Tayp fɔ di sik we dɛn kɔl anencephaly | Simpul ɛksplen |
|---|---|
| Meroanɛnsɛfali we dɛn kɔl Meroanencephaly | insay dis kayn, pat dεm na di bren stεm εn di midbren de divεlכp sכm pat dεm. Sɔm skin ɛn skel kin de we de kɔba di bren. |
| Holoanencephaly we gɛt di sik | Dis na di kayn we we pipul dɛn kin gɛt mɔ. Di bren nɔ de divɛlɔp atɔl. |
| Kraniɔrachischisis we de mek pɔsin gɛt sik | Dis na di kayn we we kin rili bad. na ya, di bren, di sכkul, εn di spεnal kכd nכ de divεlכp gud gud wan. |
Wetin na de sayn dɛm wae kin no dis sik?
yu kin no dis kכndyushכn kwik kwik wan tru tεst dεm we uman bεlε. Dɔktɔ dɛn de pe atɛnshɔn to dis.
- Blɔd tɛst: Di mama in blɔd lɛvɛl fɔ wan prɔtin we dɛn kɔl alfa-fetoprotein (AFP) rili ay. dis na tεst we dεn kin du insay di sεkכn trimεst we di bεlε de.
- Skan: di amount of amniotic fluid we de rawnd di pikin kin tu hכy. Dɛn kɔl dis polyhydramnios . Dɔn bak, we dɛn tek ɔltra saund skan, i kin sho klia wan se sɔm pat dɛn na di pikin in skel ɛn in bren nɔ de.
- Di we aw di pikin de luk: We dɛn bɔn am, yu go notis se sɔm pat dɛn na di pikin in skel nɔ de, in bren tisu dɛn de na do, ɛn di ed smɔl pas aw yu bin de tink.
Wetin pikin we dɛn jɔs bɔn kin fil?
Dis na sɔntin we kin mek mama ɔ papa fil pen we pɔsin nɔ go ebul fɔ imajin. Fɔ pikin dɛn we dɛn bɔn wit dis sik:
- No kɔnshɛns nɔ de.
- Nɔ vishɔn nɔ de.
- Nɔbɔdi nɔ de yɛri.
- A nɔ de fil pen.
sכmtεm, pikin dεm we in bren stεm dεn dכn divεlכp sכmtεm kin sho sכm rεflεks dεm we dεn tכch dεm. Tin dɛn lɛk fɔ blo, fɔ muv dɛn an ɛn fut dɛn. We yu si dɛn tin ya, yu go gɛt di aidia se di pikin de fil wi. Bɔt i nɔto rili sɔntin we dɛn kin du wit ɔl dɛn at. Na sɔntin we kin apin ɔtomɛtik wan. Bikɔs di big pat dɛn na di bren nɔ de, di pikin nɔ de fil ɔ ɔndastand ɛnitin.
Wetin na di tin dɛm wae kin mek pɔrsin gɛt anɛnsɛfali ɛn di tin dɛm wae kin mek pɔrsin gɛt dis sik?
I nɔ pɔsibul fɔ tɔk klia wan wetin kin mek pɔsin gɛt anɛnsɛfa, bɔt dɛn dɔn no bɔku tin dɛn we kin mek i gɛt dis sik.
De impɔtant tin na dat dis sik nɔr kin ɔltɛm gɛt frɔm dɛn mama ɛn papa. Dis min se i kin apin randomly, ivin if nɔbɔdi nɔ bin dɔn gɛt am na di famili. Bɔt if yu bin dɔn gɛt pikin we bin dɔn gɛt nyural tyub prɔblɛm (lɛk spina bifida), di risk fɔ mek yu nɛks pikin gɛt di sem sik go bɔku smɔl. I rili impɔtant fɔ tɔk to yu dɔktɔ bɔt dis.
| Risk factor | Diskripshɔn ɛn wetin fɔ du |
|---|---|
| Fɔlik Asid we Nɔ Gɛt | Dis na di men ɛn di tin we kin mek pɔsin nɔ gɛt dis sik. Fɔlik asid na wan kayn vaytamɛn B9. i implεnt fכ gεt inof fכlik asid frכm di tεm we yu de tray fכ bεlε εn insay di fכs 3 mכnt dεm we yu bεlε. Tek di doz we dɛn se (bɔku tɛm na 400 mcg) ɛvride lɛk aw yu dɔktɔ se. |
| Shuga | If di mama gɛt dayabitis we i nɔ ebul fɔ kɔntrol, dat bak na risk. I impɔtant fɔ kɔntrol di blɔd shuga lɛvɛl fayn fayn wan bifo yu gɛt bɛlɛ. |
| Sɔm mɛrɛsin dɛn | Mɛrɛsin fɔ siz, maygren, ɛn sɔm mental sik dɛm (lɛk valproic acid) kin mek dis risk bɔku. If yu de tek ɛni mɛrɛsin, tɔk to yu dɔktɔ bɔt am jɔs afta yu plan fɔ gɛt bɛlɛ. Nɔ stɔp fɔ tek ɛni mɛrɛsin if yu dɔktɔ nɔ advays yu. |
| Yuz drɔgs | di yus fכ drog lεk opioid insay di fכs tu mכnt dεm we di bεlε de, i kin mek bak di nyural tyub dεfekt. |
Aw εksεkεkt dεn kin no dis kכndyush כn we uman bεlε?
We yu go na di klinik we yu gɛt bɛlɛ, dɔktɔ dɛn go du bɔku tɛst fɔ no if yu bɔn pikin we nɔ fayn. Dɛn tɛst ya kin ɛp mɔ fɔ no if pɔsin gɛt anɛnsɛfa.
- Kwad Mak Skrin: Dis na tɛst we dɛn kin du pan di mama in blɔd. i de chεk tin dεm lεk AFP lεvεl fכ gεt aydia fכ nyural tyub dεfekt εn כda jεnεtik kכndishכn dεm.
- Ultrasound scan: Dis na di we aw dɛn kin yuz mɔ. wan anomaly skan, we dεn kin du bitwin 18-20 wik, de egzamin di pikin in sכkul, in bren, εn in spεnal kכd. If anɛnsɛfali de, dɛn kin no am klia wan wit dis skan. Sɔmtɛm dɛn kin no am ivin bifo tɛm, arawnd 8-12 wik.
- Fetal MRI (Magnetic Resonance Imaging): If di skan sho ɛni prɔblɛm, yu dɔktɔ kin tɛl yu fɔ du MRI fɔ stɔdi di bren ɛn di spɛnal kɔd dip wan.
- Amniocentesis: insay dis tεst, dεn de tek wan rili sכm sεmpl fכ di amniotic fluid we de rawnd di pikin εn tεst am. if di lεvεl fכ AFP insay da wata de εlevεt, i kin bi sayn fכ nyural tyub dεfekt.
Yu tink se tritmɛnt de fɔ dis?
Dis na di harsh trut fɔ dis tɔpik. No tritmɛnt ɔ mɛrɛsin nɔr de fɔ anencephaly. Na kɔndishɔn we nɔ gri wit layf.
We yu gɛt diagnosis lɛk dis, dɔktɔ ɛn ɔspitul wokman dɛn go gi yu ɛn yu famili di sɔpɔt we yu nid pan filin. Dɛn go ɛksplen to yu di tin we de apin, tɔk bɔt di tin dɛn we yu go ebul fɔ du, ɛn ɛp yu fɔ pas dis tranga tɛm.
Yu kin wɔri se yu pikin go fil pen. Bɔt lɛk aw wi bin dɔn tɔk, pikin dɛn we gɛt anɛnsɛfali nɔ kin fil pen bikɔs di men pat dɛn na dɛn bren nɔ de. So nɔ wɔri bɔt am.
Yu tink se dɛn go ebul fɔ du ɛnitin fɔ mek dis kayn tin nɔ apin?
Pan ɔl we e nɔr pɔsibul fɔ mek yu nɔr gɛt am kpatakpata, sɔm tin dɛn de wae yu kin du fɔ ridyus yu risk. Dɛn tin ya impɔtant mɔ if yu de plan fɔ gɛt bɛlɛ bak.
- Tek fɔlik asid: Dis na di tin we impɔtant pas ɔl. Start fɔ tek 400 mcg (maykrogram) fɔlik asid ɛvride at le 3 mɔnt bifo yu gɛt bɛlɛ. biכs di nyural tyub dεfekt kin apin insay di fכs wik dεm we yu bεlε, i implεnt fכ tek fכlik asid frכm di tεm we yu de tray fכ bεlε. If yu dɔn gɛt pikin we gɛt nyural tyub prɔblɛm bifo, yu dɔktɔ kin tɛl yu fɔ gi yu mɔ folik asid.
- Sek dɔktɔ advays (Preconception Counseling):If yu de plan fɔ gɛt bɛlɛ, go to dɔktɔ bifo yu gɛt bɛlɛ. Tɔk bɔt di mɛrɛsin dɛm wae yu de tek, ɛni ɔda mɛrɛsin wae yu gɛt (lɛk dayabitis), ɛn gɛt di gayd wae yu nid fɔ gɛt wɛl bɔdi bɛlɛ.
- Wɛlbɔdi layf: It fayn it, nɔ drink rɔm ɛn smok. We yu tek kia ɔf yu wɛlbɔdi gud gud wan, dat kin afɛkt yu pikin in wɛlbɔdi dairekt wan.
Di pwɛl hat ɛn shɔk we pɔsin kin gɛt we i lɔs pikin lɛk dis, kin rili at fɔ bia. I rili impɔtant fɔ gɛt pɔsin fɔ tɔk to ɛn tɛl yu aw yu de fil. Tɔk to yu man, yu fambul, ɛn yu padi dɛn. If nid de, nɔ shem fɔ go to pɔsin we sabi bɔt mental wɛlbɔdi biznɛs fɔ ɛp yu. If yu kin jɔyn sɔpɔt grup wit ɔda mama ɛn papa dɛn we dɔn go tru di sem kayn ɛkspiriɛns, dat bak go bi big trɛnk fɔ yu.
Mɛsej we dɛn kin kɛr go na os
- Anɛnsɛfali na siriɔs prɔblɛm we dɛn bɔn we di pikin in bren ɛn in skel nɔ de divɛlɔp fayn.
- Nɔr mɛrɛsin nɔr de fɔ dis sik, ɛn i nɔr kin gri wit di pikin in layf.
- Dis nɔto di mama ɛn papa dɛn fɔlt. Na kɔmplikɛshɔn we kin apin rili ali we uman gɛt bɛlɛ.
- if yu tek fכlik asid bifo yu bεlε i kin ridyus di risk fכ dεn nyural tyub dεfekt ya bכku bכku wan.
- If yu de plan fɔ gɛt bɛlɛ, mɔ if yu bin dɔn gɛt pikin bifo we gɛt nyural tyub prɔblɛm, i rili impɔtant fɔ tɔk to yu dɔktɔ ɛn gɛt di advays we yu nid.
- If yu si am se i nɔ izi fɔ bia wit di pwɛl at we kin kam afta yu lɔs lɛk dis, nɔ shem fɔ aks fɔ sɔpɔt frɔm yu fambul, padi dɛn, ɔ pɔsin we sabi advays yu.
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