Anencephaly: wetin yu nid fכ no bכt wan kכndyushכn we di bren εn di sכkul nכ de fכm fayn fayn wan na di pikin we de bכn

Tide wi go tɔk bɔt wan tɔpik we gɛt sɔm kayn sɛns, ɛn we de mek bɔku mama ɛn papa dɛn shɔk. Dat na di sik we dɛn kin bɔn we dɛn kɔl Anencephaly. Sɔntɛm yu nɔ ivin yɛri bɔt dis nem. Bɔt i rili impɔtant fɔ mek ɛnibɔdi we de op fɔ gɛt nyu pikin no bɔt dis. We yu rid dis, dat kin mek yu fil bad ɛn fred. Bɔt wi de tɔk bɔt dis fɔ tich una, nɔto fɔ mek una fred. So lɛ wi tɔk bɔt dis ditayli ɛn simpul wan.

Fɔ tɔk am simpul wan, wetin na Anɛnsɛfali?

Anɛnsɛfali na wan sik we rili siriɔs, we dɛn kin bɔn wit (we kin de we dɛn bɔn am) . Fɔ tɔk am simpul wan, insay dis kɔndishɔn, dɛn kin bɔn pikin we nɔ gɛt sɔm impɔtant pat dɛn na in bren ɛn in skel. Dis na kɔndishɔn we rili sɔri.

Di bren de kɔntrol ɔltin we wi bɔdi de du. Frɔm we yu de blo to we yu de tink ɛn fil, di bren impɔtant fɔ ɔltin. So, biכs pat dεm na di bren nכ fכm fayn, pikin we dεn bכn wit Anencephaly gεt rili sכm chans fכ liv. Bɔku tɛm, dɛn kayn bɛlɛ dɛn de kin dɔn we uman kin kɔmɔt na bɛlɛ ɔ we dɛn kin bɔn pikin we dɔn day. Ivin if dɛn bɔn dɛn, dɛn pikin dɛn de jɔs de liv fɔ sɔm minit, sɔm awa, ɔ fɔ sɔm dez at ɔl.

Aw dis kin apin? Wetin na di nyural tiub?

Fɔ ɔndastand dis, wi nid fɔ go bak to di fɔs wik dɛn we di pikin de gro. Tink bɔt am, insay di fɔs wik dɛn we di pikin de gro, mɔ bitwin di tɔd ɛn di fɔs wik we i gɛt bɛlɛ , di pikin in nervɔs sistɛm kin bigin fɔ fɔm. I kin bigin lɛk wan flat pat pan di tisu. afta dat dis tisu de fol εn fכm to wan shep we lεk tכb. Wi kɔl dis di nyural tiub .

dis nyural tyub na di fawndeshכn fכ di pikin in כl nεv sεstem.

• di bren εn di sכkul de fכm frכ m di כp pat pan di tכb .
• di spεnal kכd de divεlכp frכ m di midul pat pan di tכb .
• di lכw pat pan di tכb de fכm di bakbon dεm.

anεnsεfali kin apin we di tכp pat pan di nyural tכb nכ de kכloz fayn . Dis min se di bren ɛn di skel nɔ de lɔk fayn usay dɛn fɔ lɔk. Dis kin mek impɔtant pat dɛn na di pikin in bren lɛk di fɔs bren ɛn di sɛribra nɔ de divɛlɔp. Pan ɔl we sɔm ɔda pat dɛn na di bren kin fɔm, dɛn de na do, nɔto skel ɔ skin kɔba dɛn. Wi kin kɔl dɛn kayn difrɛns ya Nyural Tiub Difɛkt (NTD) .

Yu tink se men kayn anɛnsɛfali de?

Yɛs, tri men kayn anencephaly de. כl di tri tכp dεm de kil di pikin.

• Meroanencephaly: Insay dis kayn, pat dεm na di bren stεm εn midbren de divεlכp sכm pat dεm. Sɔm skin ɛn sɔm pat dɛn na di skel kin kɔba di bren bak.
• Ɔlɔnɛnsɛfali:Dis na di kayn sik wae kin kam pan pɔrsin wae gɛt anɛnsɛfa. pan dis kכndyushכn, di bren nכ de divεlכp atכl.
• Craniorachischisis: Dis na di kayn we we kin rili bad. If na so i bi, di bren, di sכkul, εn di spεnal kכd nכ de divεlכp atכl.

Aw dis sik kin kɔmɔn? Wetin na di sayn dɛm we pɔsin kin si we uman gɛt bɛlɛ?

Anɛnsɛfali na wan kɔmɔn nyural tyub dɛfɛkt. Stɔdi dɔn sho se i kin apin pan lɛk 1 pan ɛvri 1,000 bɛlɛ dɛn. Bɔt as wi bin dɔn tɔk, bikɔs bɔku pan dɛn bɛlɛ ya kin dɔn wit bɛlɛ, di rial nɔmba fɔ di pikin dɛn we dɛn kin bɔn wit dis sik kin smɔl pasmak.

yu kin no dis kכndyushכn kwik kwik wan tru tεst dεm we dεn kin du we uman bεlε. Bɔku sayn dɛn de we kin sho dis.

Wetin na di sayn dɛm fɔ dis sik pan pikin we dɛn jɔs bɔn?

Dis bak rili at fɔ tɔk bɔt. Bikɔs pikin we dɛn bɔn wit anɛnsɛfali nɔ gɛt big pat dɛn na in bren, dɛn nɔ kin no ɔ no bɔt ɛnitin.

Dat min se, .

• Dɛn nɔ ebul fɔ si .
• Dɛn nɔ de yɛri .
• Dɛn nɔ kin fil pen .

Sɔntɛnde, if di pikin in bren stem dɔn ful-ɔp, di pikin kin gɛt sɔm tin dɛn we i kin du . Dis min se dɛn kin flinch smɔl we yu tɔch dɛn. Dis kin rili mek mama ɛn papa dɛn fil fayn. Bɔt, wi nid fɔ ɔndastand se dis nɔ min se di pikin no natin, i kin fil yu, ɔ i kin liv fɔ lɔng tɛm. Na jɔs sɔntin we kin apin ɔtomɛtik wan.

Wetin na di tin dɛm wae kin mek pɔrsin gɛt anɛnsɛfali ɛn di tin dɛm wae kin mek pɔrsin gɛt dis sik?

I nɔ kin izi fɔ no wan tin we kin mek pɔsin gɛt dis sik. Dɛn biliv se bɔku tɛm na bikɔs ɔf di tin dɛn we de apin na di bɔdi ɛn di tin dɛn we de apin na di say we dɛn de.

Dis na sɔntin we kɔmɔt frɔm jɛnɛreshɔn?

Nɔto ɔltɛm pɔsin kin gɛt anɛnsɛfali. Bɔrku tɛm, i kin kam bikɔs ɔf wan jɛnɛtik muteshɔn we kin apin wan wan tɛm, we nɔr kin gɛt famili histri.

Bɔt if yu bin dɔn gɛt pikin we gɛt nyural tyub prɔblɛm (e.g. spina bifida) , yu risk fɔ gɛt ɔda pikin we gɛt di sem prɔblɛm na lɛk 20 tɛm pas di avɛrej pɔsin.

Aw fɔ no dis sik we uman gɛt bɛlɛ?

wit di tεknכlכji we de naw, dεn kin no se anεnsεfali wit hכy akכda tru tεst bifo dεn bכn. Dɛn kin du dɛn tɛst ya bitwin 18-20 wiks we uman gɛt bɛlɛ.

• Kwad Mak Skrin: Dis na tɛst we dɛn kin du pan blɔd sɛmpul we dɛn tek frɔm di mama. I de chɛk fɔ 4 tin dɛn na di mama in blɔd. dis tεst de chεk bak fכ di alfa-fεtoprotein (AFP) lεvεl we wi bin tכk bכt bifo. if di AFP lεvεl rili hכy, na sayn fכ nyural tyub dεfekt.
• Ultrasound: Dis na sɔntin we bɔku pipul dɛn sabi. I de yuz sawnd wev fɔ tek pikchɔ fɔ di pikin. Na ya, di dɔktɔ kin chɛk aw di pikin in skel, in bren, ɛn in spaynal kɔd de gro. Dɛn kin no klia wan se dɛn gɛt anɛnsɛfali wit dis skan.
• Fetal MRI scan: Sɔntɛnde, if dɛn nid fɔ kɔnfɔm mɔ, di dɔktɔ kin rifer yu fɔ mek dɛn du MRI skan. dis kin mek yu mek klia, mכr ditayl imej dεm fכ di bren εn spεnal kכd.
• Amniocentesis: insay dis tεst, dεn de put wan nidul we rili tכn insay di uterus εn dεn tek sכm sכm sεmpl fכ di amniotic fluid we de rawnd di pikin. dεn de tεst di fכs fכ di lεvεl dεm fכ wan εnzym we dεn kכl AFP εn asetilkolinεstεrayz. if dεn lεvεl dεm ya hכy, na strכng sayn fכ nyural tyub dεfekt.

Wetin na di tritmɛnt ɛn aw fɔ si am?

Dis rili de mek wi at pwɛl. Naw, nɔr tritmɛnt ɔr mɛrɛsin nɔr de fɔ anencephaly, bikɔs di bren nɔr kin ebul fɔ gɛt bak wans i dɔn lɔs.

Dis kɔndishɔn kin kil pɔsin. I min se di pikin nɔ gɛt chans fɔ liv. Bɔku tɛm, di pikin we de na di bɛlɛ kin day na di bɛlɛ. Ivin if dɛn bɔn am, i kin day insay sɔm awa ɔ sɔm dez. Dis na pen we di mama ɛn papa dɛn nɔ ebul fɔ bia. Na dis kayn tɛm, yu dɔktɔ, nɔs, ɛn ɔda mɛdikal wokman dɛm go gi yu ɛn yu famili di saykolojik sɔpɔt we yu nid ɛn ɛp yu fɔ bia wit dis pwɛl hat.

Wetin wi go du fɔ mek dis kayn tin nɔ apin?

Pan ɔl we dɛn nɔ kin ebul fɔ stɔp wan sik lɛk anɛnsɛfali 100%, bɔku tin dɛn de we wi kin du fɔ ridyus di prɔblɛm bad bad wan .

• Fɔ gɛt inof fɔlik asid: Dis na di tin we impɔtant pas ɔl. כl uman we de plan fכ bכn pikin fכ bigin tek 400 mcg (maykrogram) fכlik asid evride fכ at le wan mכnt bifo i bεlε. di nyural tyub dεfekt kin apin insay di fכs mכnt we yu bεlε, bifo yu ivin no se yu bεlε. Na dat mek i impɔtant fɔ bigin tek fɔlik asid kwik kwik wan. If yu dɔn gɛt pikin we gɛt nyural tyub prɔblɛm bifo, yu dɔktɔ kin tɛl yu fɔ gi am mɔ doz.
• Fɔ tɔk to yu dɔktɔ bɔt di mɛrɛsin dɛn we yu de tek: If yu de plan fɔ bɔn pikin, tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn we yu de tek naw. Sɔm mɛrɛsin dɛn kin ambɔg di pikin we de na di bɛlɛ, so yu dɔktɔ kin tɛl yu fɔ tek ɔda mɛrɛsin dɛn we fayn fɔ yu.
• Aw fɔ kɔntrol yu wɛlbɔdi prɔblɛm: If yu gɛt ɔda sik lɛk dayabitis, mek shɔ se yu kɔntrol am fayn fayn wan bifo yu gɛt bɛlɛ. Tɔk to yu dɔktɔ fɔ advays.

Aw yu kin dil wit di sɔri we yu kin fil we yu lɔs yu pikin?

Fɔ no se yu pikin gɛt Anencephaly kin bi wan pan di bad bad tin dɛn we ɛni mama ɔ papa na di wɔl kin gɛt. Na pen we pɔsin nɔ go ebul fɔ tɔk. Na nɔmal tin fɔ fil bɔku tin dɛn dis tɛm, lɛk fɔ fil bad, fɔ vɛks, fɔ nɔ gɛt op, ɛn fɔ fil gilti.

Nɔ tray fɔ bia dis sɔri-at yu wan.

• Tɔk bɔt aw yu de fil wit yu man/wɛf, fambul, ɛn padi dɛn we yu kin abop pan.
• Di mɛdikal staf go gi yu di sɔpɔt we yu nid. Dɛn kin rifer yu to mɛntɛl hεlth pɔrsin ɔr sɔpɔt grup wit ɔda mama ɛn papa dɛm wae dɔn go tru di sem kayn ɛkspiriɛns.
• I go tek tɛm fɔ mek wi wɛl frɔm dis sɔri-at. Mek yusɛf dil wit dis pan yu yon pawa.

Ivin if yu du ɔl wetin yu dɔktɔ tɛl yu fɔ du fɔ gɛt bɛlɛ we gɛt wɛlbɔdi, sɔntɛnde dɛn siriɔs prɔblɛm ya we yu bɔn kin apin. Dat na di harsh rialiti. Anencephaly na wan sik we kin rili mek pɔsin in at pwɛl. Bɔt nɔto yu wan de pan dis waka. Nɔ shem fɔ gɛt di sɔpɔt we yu nid.