Oh, sɔntɛnde wi kin rili sɔri ɛn shɔk wit di tin dɛn we wi kin yɛri, nɔto so? Ɛspɛshali we i de bɔt nyu bebi we de kam na dis wɔl. Tide wi go tɔk bɔt wan rare condition wae kin sensitive smɔl, bɔt e rili impɔtant fɔ wi fɔ no bɔt. Wi kin kɔl dis Iniencephaly.
So, wetin na Iniencephaly?
Fɔ tɔk am simpul wan, Iniencephaly na wan kɔmpleks sik we dɛn bɔn wit . I kin mɔna di pikin in ed, in nɛk, ɛn in spayna. di pikin dεm we dεn bכn wit dis kכndyushכn kin gεt rili sכt nεk, כ ivin nכ gεt nεk atכl. Dɛn kin gɛt bak ed we bɛn ɛn spɛnal difɔmiti. Imajin aw dis kin at fɔ du. Bɔku tɛm, apat frɔm dɛn men prɔblɛm ya, tin dɛn kin apin we nɔ kin fayn na ɔda say dɛn na di pikin in bɔdi lɛk di at ɛn in lɔng.
Bɔku tɛm, di pikin dɛn we dɛn bɔn wit dis sik kin day bifo dɛn bɔn dɛn, ilɛksɛf na di bɛlɛ ɔ jɔs afta dɛn bɔn dɛn. Na smɔl tɛm nɔmɔ, pikin we nɔ gɛt bɛtɛ sik kin liv fɔ lɔng tɛm.
Aw dis sik kin kɔmɔn?
infakt, dis kכndyushכn we dεn kכl ``Iniencephaly`` nכ kin bכku . Dat min se, dɛn nɔ kin si am bɔku tɛm. Sayɛnsman dɛn bin fɔs ripɔt dis sik frɔm 1836. Frɔm di tin dɛn we dɛn dɔn rayt naw, dɛn se dis sik kin apin to lɛk wan to wan ɔndrɛd pikin dɛn pan ɛvri ɔndrɛd tawzin pikin dɛn we dɛn bɔn. Bɔt dɛn kɔlkyulɛshɔn ya difrɛn smɔl. כda tin na dat dεn se dis kכndyushכn de sכmtεm bכku pan uman bebi dεm bak.
Aw iniencephaly kin apin?
Lɛ wi si aw dis Iniencephaly kin apin. Dis na rili wan prɔblɛm we dɛn bɔn wit di nervɔs sistɛm . Dɔktɔ dɛn kɔl dis ``Nyural Tiub Difɛkt''. Yu no se di fɔs wik dɛn afta dɛn gɛt bɛlɛ, rili impɔtant? na dis tεm we di ``nyural tכb'', we di pikin in bren, spεnal kכd, εn spεnal kכd (di men nεv we de rכn tru di spεnal kכd) de bigin fכ fכm. nכmal wan, bay di tכd כ fכ wik we di bεlε de, dis nyural tכb kin kכmplit, εn di nεv sεstem fכ divεlכp fayn fayn wan. Bɔt pan di kes fɔ Iniencephaly, fɔ sɔm rizin dɛn kin ambɔg dis prɔses, ɛn di nervɔs sistɛm nɔ kin divɛlɔp fayn fayn wan.
Wetin na de tin wae kin mek pɔrsin gɛt iniencephaly?
I at fɔ tɔk di rayt tin we kin mek i apin. di dכkta dεm biliv se na kכmbaynshכn fכ di jεnεtik (i.e. inhεrit) εn di envayroment fכktכ dεm. insay sכm kes dεm, dεn fכnshכn se di kromozom abnכmaliti dεm, lεk `(Monosomy X)`, `(Trisomy 13)` εn `(Trisomy 18)`, de sho se dεn gεt am.
apat frכm dat, sכm tin dεm we de apin na di envayroment we uman bεlε kin mek dis risk bכku bak. Dɛn tin ya na:
- Fɔlik asid we nɔ de: .Dis na tin we rili impɔtant. Wi go tɔk mɔ bɔt dis.
- Yuz rɔm: Fɔ drink rɔm we yu gɛt bɛlɛ.
- Smok: Dat min tin dɛn lɛk fɔ smok sigrɛt.
- Dayabitis: Di mama gɛt dayabitis we i nɔ ebul fɔ kɔntrol.
- Fat pasmak: Di mama in bɔdi wet pas di wet we dɛn se i fɔ gɛt.
- Yuz sɔm mɛrɛsin dɛn: Dɛn kin yuz sɔm mɛrɛsin dɛn, mɔ we uman gɛt bɛlɛ kwik kwik wan. Sɔm ɛgzampul dɛn na sɔlfa drɔgs, antiseizure drɔgs, diuretics, ɛn antihistamines.
di tin we impɔtant pas ɔl na dat if yu pikin bin gɛt nyural tyub dɛfekt we yu bin gɛt bɛlɛ bifo, di risk go bɔku smɔl insay yu nɛks bɛlɛ.
Aw dɛn kin no se pɔsin gɛt Iniencephaly?
As soon as dεn bכn di pikin, dכkta dεm kin no di kכndyushכn fכ iniencephaly bay we dεn luk di pikin in sכkul εn spayna. Dat min se, dɛn kin no bay di sayn dɛn we de na do . If di pikin liv fɔ lɔng tɛm, di dɔktɔ kin yuz tɛst dɛn lɛk ɔltra saund, CT skan, ɛn MRI fɔ no di sik fayn fayn wan ɛn disayd us tritmɛnt de.
Yu nɔ go ebul fɔ no dis bifo dɛn bɔn di pikin?
Yɛs, dis na kwɛstyɔn we rili impɔtant. Bɔku tɛst dɛn de we kin mek pɔsin no if di nyural tyub nɔ fayn, lɛk iniencephaly, ivin bifo dɛn bɔn di pikin, dat na we i gɛt bɛlɛ . Yu dɔktɔ kin tɛl yu fɔ du dɛn tɛst ya as pat pan di chɛk-ap we dɛn kin du ɔltɛm, ɔ if dɛn tink se yu bɛlɛ de pan denja.
- Prenatal ultrasound: Dis na di skan we wi ɔl sabi. I de yuz sawnd wev fɔ tek pikchɔ fɔ di pikin we de na di bɛlɛ. di dכkta de yuz dis skan fכ luk gud wan pan di pikin in ed, in nεk, εn spayna fכ chεk fכ eni abnכmal tin dεm.
- Kwad mak skrin: Dis na blɔd tɛst we dɛn kin du pan di mama. I de luk fɔ sɔm ɔmon ɛn prɔtin dɛn. wan imכtant protin we dεn de luk pan na alfa-fεtoprotein (AFP). Dis AFP na di pikin de mek am. Dɔn i kin pas insay di mama in blɔd. if di lεvεl fכ AFP na di mama in bכdi rili ay, i kin sho se di pikin kin gεt nyural tyub dεfekt.
- Amniocentesis we dɛn kin yuz: .insay dis tεst, di dכkta de yuz wan tint nidul fכ pul sכm sכm pan di amniotic fluid we de rawnd di pikin. di lab de mכsu di lεvεl fכ AFP insay dis amniotic fluid, εn i de du tεst bak we dεn kכl ``Karyotype testing'' fכ chεk fכ kromozom abnכmaliti dεm. Dɛn tu tɛst ya kin gi yu aidia fɔ no if nyural tiub prɔblɛm de ɛn wetin na di kɔz.
- Fetal MRI: Dis na wan kayn skan bak. I de yuz redio wev ɛn wan strɔng magnɛtik fil fɔ mek rili klia, ditayli pikchɔ dɛn bɔt di pikin in bon ɛn tisu dɛn. di bεst pat na dat MRI skan nכ de mek di pikin kכmכt rεdyushכn.
I rili impɔtant fɔ no dis sik kwik kwik wan . We dɛn no di pikin kwik kwik wan, di dɔktɔ dɛn kin ɛksplen di pikin in sik to di famili ɛn gi di mama ɛn papa di sɔpɔt we dɛn nid fɔ gɛt pan in maynd. If di bɛlɛ kɔntinyu, dɛn abnɔmal tin ya kin mek di mama gɛt sɔm prɔblɛm dɛn bak we i de bɔn pikin.
Wetin na di tritmɛnt dɛm fɔ Iniencephaly?
Infakt, no patikyula tritmɛnt nɔr de fɔ dis sik, Iniencephaly. Bɔku pan di pikin dɛn we gɛt dis sik kin day we dɛn gɛt bɛlɛ, we dɛn de na di bɛlɛ, ɔ insay sɔm awa afta dɛn bɔn dɛn. Dis na tin we rili sɔri. Dɔktɔ ɛn wɛlbɔdi wokman dɛn kin gi di famili di sɔpɔt we dɛn nid fɔ bia wit dis pwɛl at ɛn fɔ bia wit am.
Na smɔl tɛm nɔmɔ, we min se na smɔl nɔmba pan di pikin dɛn kin liv fɔ lɔng tɛm, dɔktɔ dɛn kin trit ɛni pikin wan bay wan, bay di sayn dɛn we kin apin da tɛm de.
Fɔlik asid kin mek dis nɔ apin?
Dis na di impɔtant tin we wi ɔl nid fɔ no bɔt . di imכtant tin we yu kin du fכ mek yu nכ gεt nyural tyub dεfekt, inklud anencephaly, na fכ tek fכlik asid bifo εn we yu bεlε . Fɔlik asid na wan B vaytamɛn. I impɔtant fɔ mek nyu sɛl dɛn na wi bɔdi.
Risach dɔn sho se if yu tek 400 maykrogram (mcg) fɔlik asid fɔ wan de , i kin ridyus di risk fɔ mek yu gɛt nyural tyub difrɛns bay lɛk 70% . I rili impɔtant fɔ mek ɔl uman dɛn we dɔn rich di ej fɔ bɔn pikin fɔ tek dis mɔni ɛvride. Tu rizin dɛn de fɔ dis:
- Bɔku bɛlɛ dɛn nɔ kin plan.
- di nyural tyub dεfekt kin apin insay di fכs wik dεm we di bεlε de, we bכku pipul dεn nכ kin ivin no se dεn bεlε.
So, if yu de op fɔ bɔn pikin, ɔ yu dɔn rich di ej fɔ bɔn pikin, mek shɔ se yu tɔk to yu dɔktɔ bɔt fɔlik asid. If yu de plan fɔ gɛt bɛlɛ, aks yu dɔktɔ fɔ tɛl yu wan spɛshal vaytamɛn we dɛn mek bifo yu bɔn we gɛt fɔlik asid.
uman dεm we bin dכn bכn pikin bifo we gεt nyural tyub dεfεkt εn we de εkspεkt כda pikin kin nid ivin mכr fכlik asid. di U.S. Centers for Disease Control and Prevention (CDC) se yu fɔ tek 4,000 maykrogram (4 miligram) fɔlik asid ɛvride, fɔ bigin wan mɔnt bifo yu gɛt bɛlɛ ɛn kɔntinyu fɔ tek di fɔs tri mɔnt we yu gɛt bɛlɛ. Bɔt i nɔ fayn fɔ tek bɔku folik asid . So, mek shɔ se yu go to yu dɔktɔ bifo yu it mɔ fɔlik asid.
Wetin ɔda tin dɛn kin du fɔ ridyus di prɔblɛm?
Apat frɔm we yu tek fɔlik asid, sɔm ɔda tin dɛn de we yu kin du fɔ ridyus di risk fɔ gɛt anɛnsɛfali:
- Fɔ avɔyd sɔm mɛrɛsin dɛn we dɛn no se kin mek yu nyural tyub nɔ fayn. (Tɔk to yu dɔktɔ bɔt dis.)
- Fɔ stɔp fɔ drink rɔm ɔltogɛda.
- Fɔ mek yu gɛt wɛlbɔdi bɔdi wet fɔ yu.
- If yu gɛt dayabitis, i impɔtant fɔ kɔntrol am fayn fayn wan.
- If yu de smok, stɔp.
Wetin na di lukin-grɔn fɔ iniencephaly?
Iniencephaly na wan rili kɔmpleks jenɛtik kɔndishɔn. So, bɔku tɛm, di tin we kin apin to dis sik nɔ kin rili fayn . Bɔku bɛlɛ kin dɔn we uman kin pwɛl bɛlɛ ɔ we dɛn bɔn pikin we dɔn day. Ivin if dɛn bɔn di pikin layf layf wan, chans de fɔ mek i day insay sɔm awa.
As of 2019, na et pikin dɛm nɔmɔ na di wɔl dɔn liv fɔ lɔng tɛm wit di sik we dɛn kɔl iniencephaly. Dɛn dɔn du ɔpreshɔn fɔ 4 pan dɛn pipul ya, ɛn dɛn ripɔt se di tritmɛnt dɔn wok fayn. Bɔt dis na tin we nɔ kin apin so ɔltɛm.
Aw fɔ plan fɔ gɛt bɛlɛ we gɛt wɛlbɔdi?
If yu dɔn rich di ej fɔ bɔn pikin, i impɔtant fɔ tek 400 maykrogram fɔlik asid ɛvride, ilɛksɛf yu nɔ de tray fɔ gɛt bɛlɛ. Bikɔs lɛk af pan ɔl di bɛlɛ dɛn we dɛn nɔ plan fɔ gɛt, di nyural tyub dɛn we nɔ fayn, inklud anɛnsɛfali, kin apin bifo bɔku pipul dɛn ivin no se dɛn gɛt bɛlɛ, ɛn fɔlik asid kin mek dɛn nɔ gɛt dɛn bɛlɛ.
Di wan dɛn we de plan fɔ gɛt bɛlɛ fɔ rili go to dɔktɔ ɛn gɛt advays bifo dɛn gɛt bɛlɛ . Insay dis apɔntinmɛnt, yu dɔktɔ go rivyu ɔl di tin dɛn we kin mek yu gɛt prɔblɛm ɛn tɛl yu di tin dɛn we yu kin du fɔ gɛt bɛlɛ we gɛt wɛlbɔdi.
Di tin dɛn we impɔtant pas ɔl we wi nid fɔ mɛmba frɔm dis stori na
Okay, so wi op se yu gɛt sɔm aidia bɔt di Iniencephaly we wi bin tɔk bɔt. Pan ɔl we dis na tin we nɔ kin apin so ɔltɛm ɛn we kin kɔmpleks, i rili impɔtant fɔ mek wi no bɔt am.
Mɛmba se i rili impɔtant fɔ ɔl uman dɛn we de ɛkspɛkt pikin fɔ gɛt di rayt fɔlik asid bifo dɛn gɛt bɛlɛ ɛn insay di fɔs tri mɔnt we dɛn gɛt bɛlɛ.
dis kin ridyus di risk fכ nyural tyub dεfekt lεk iniencephaly bכku bכku wan. I rili impɔtant bak fɔ liv fayn layf, nɔ fɔ drink rɔm ɛn smok, ɛn fɔ kɔntrol tin dɛn lɛk dayabitis. If yu gɛt ɛni kwɛstyɔn ɔ dawt, mek shɔ se yu tɔk to yu dɔktɔ. Dɛn go gi yu di advays we yu nid.
` Iniencephaly, bכn difεkt, nyural tyub dεfekt, fכlik asid, bεlε, we dεn bכn am











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