Yu pikin gɛt prɔblɛm wit in bren? Lan bɔt Holoprosɛnsɛfali (HPE) .

Wɔd nɔ go ebul fɔ sho di gladi at ɛn lɔv we wi kin fil we wi de luk pikin we dɛn jɔs bɔn, nɔto so? Bɔt sɔmtɛm, wi pikin dɛn kin kam na dis wɔl wit wɛlbɔdi prɔblɛm we wi nɔ de ɛkspɛkt. Tide, wi go tɔk bɔt wan bɔn prɔblɛm we kɔmplikt smɔl, bɔt we wi fɔ no bɔt.

Wetin na Holoprosɛfali (HPE)?

Fɔ tɔk am simpul wan, Holoprosencephaly, we dɛn kin kɔl bak HPE, na wan sik we dɛn bɔn wit we pikin stil de na di bɛlɛ. Dis na prɔblɛm we dɛn bɔn pikin. insay dis kכndishכn, di bren fכ di pikin we de bכn nכ de sεparayt fayn fayn wan insay di rayt εn lεft εmisfya we i de divεlכp. Yu no se wi bren nɔmal fɔ sheb to tu men pat dɛn, di rayt ɛmisfya ɛn di lɛft ɛmisfya. dis tu εmisfya dεm de kכnekt to dεn wan dεm εn de chenj infכmeshכn tru wan bכndεl fכ nεv fayb dεm we dεn kכl kכpas kכlכsum. כlso, εvri wan pan dεn εmisfya dεm ya dεn sheb to כda pat dεm lεk di fכnt lכb, di parietal lכb, di כksipital lכb, εn di tεmporal lכb.

Dis we aw di bren de sheb to pat dɛn rili impɔtant. Bikɔs dis divɛlɔpmɛnt de ɛp di bren fɔ prosɛs bɔku infɔmeshɔn di sem tɛm ɛn du difrɛn tin dɛn. so, lεk di kes fכ `(HPE)`, if dis divεlכpmεnt nכ de apin we di bren de divεlכp fayn fayn wan, i kin kכz nכmba כf prכblεm dεm we de rilet to di fכshal εn nεv sεstem.

dis kכndyushכn we dεn kכl ‘HPE’ de apin rili ali insay di pikin in divεlכpmεnt. Dis min se i kin ivin bi bifo yu no se yu gɛt bɛlɛ. Difrɛn kayn holoprosencephaly de, ɛn aw dɛn kin tranga ɛn aw dɛn kin si am kin difrɛn. Di we aw de sik kin afɛkt ɛni pikin kin difrɛn bak.

Wetin na di men kayn holoprosencephaly (HPE)?

Tri men kayn holoprosencephaly (HPE) de. Lɛ wi luk dɛn insay di ɔda we aw dɛn de du bɔku to di wan dɛn we nɔ rili bad:

Alobar ɔloprosɛnsɛfali we dɛn kɔl

Dis na di kayn we we kin rili bad . wetin de apin ya na di pikin in bren nכ de sεparayt to tu εmisfya dεm atכl. dis kin mek di strכkchכ dεm we de bitwin di bren εn di fes kin lכs, εn di bren kכva dεm kin miks. Along wit dis, dεn kin si siriכs difכmεshכn dεm na di fes. bכku tεm, pikin dεm we gεt dis kayn `(HPE)` kin bכn day כ dεn kin day sכm tεm afta dεn bכn dεm.

Semilobar ɔloprosɛnsɛfali

insay dis kayn we, di pikin in bren nכ de sheb to tu εmisfya . dis kin apin biכs di lεft say na di bren de kכnekt to di rayt say na εria dεm we dεn kכl di ``frכnt lכb dεm`` εn di ``parietal lכb dεm``. כlso, di divayd layn bitwin di rayt εn lεft εmispεri dεm na di bren, di ``inta hεmisfεrik fis,`` de כnli na di bak pat pan di bren.

Lobar holoprosɛnsɛfali we dɛn kɔl lobar

insay dis kayn we, di pikin in bren de divayd bכku pan tu εmisfya dεm., bɔt dɛn nɔ separet ɔl. pan tap we tu εmisfya dεm de (rayt εn lεft), di sεribra εmispεri dεm de kכnekt tכgeda insay di ``frכnt kכtεks``. Dis na di les siriכs fכm f כ ``(HPE)``.

Midul Intahemisfεrik (MIH) vεryכnt

apat frכm dεn tri men tכp dεm ya, wan fכs sכbtayp de we dεn kכl di Midul Intaεmisfεrik (MIH) vεryכnt. dis na di say we di pikin in bren de kכnekt togeda na di midul.

Wetin na di difrɛns bitwin haydranɛnsɛfali ɛn ɔloprosɛnsɛfali?

Yu go kɔnfyus wit dɛn tu nem ya. Hydranencephaly εn holoprosencephaly na dεn tu tin dεm we dεn bכn we de afekt di pikin in bren, bכt difrεns de bitwin dεn tu.

Hydranencephaly na we yu pikin in bren de lɔs. Dis na wan sik we nɔ kin apin so ɔltɛm we dɛn kɔl haydrosɛfalɔs (wata ed). Bebi dεm we gεt dis kכndyushכn kin gεt ed we big.

כltu, Holoprosencephaly na we di bren nכ de sεparayt fayn fayn wan insay di rayt εn lεft εmisfya di tεm we di εmbrayo de stej. Yu ɔndastand da difrɛns de?

Udat dis sik kin afɛkt? Aw i kɔmɔn?

Holoprosencephaly (HPE) na wan kכndyushכn we de afekt di pikin dεm we de divεlכp na di bεlε. i kin apin insay di sεkכn εn tכd wik we di pikin de divεlכp. Dis min se bɔku tɛm bifo yu ivin no se yu gɛt bɛlɛ.

rεsכch dεm se holoprosεnsεfali de afekt lεk 1 pan 250 pikin dεm we di εmbrayo de bigin (di sεkכn εn tכd wik we di bεlε de). Bɔt bɔku pan dɛn bɛlɛ ya kin dɔn we uman nɔ gɛt bɛlɛ ɔ we dɛn bɔn pikin we dɔn day.

fכ dat, holoprosencephaly na wan sik we nכ kin apin we dεn bכn layf layf wan, i kin apin pan lεk 1 pan 16,000 pikin dεm we dεn bכn layf layf wan.

Wetin na di sayn dɛm fɔ holoprosencephaly (HPE)?

Bikɔs difrɛn kayn holoprosencephaly (HPE) de, di kayn we aw i kin tranga ɛn di sayn dɛm kin difrɛn. Dis min se dɛn sik ya kin difrɛn frɔm wan pikin to ɔda wan.

Di kɔmɔn sayn dɛm

Di kɔmɔn sayn dɛm fɔ HPE na:

• Divɛlɔpmɛnt dilɛys dɛn .
• Intɛlektual disabiliti.
• Epilepsy ɛn sik we de mek pɔsin sik.
• Fɔ gɛt smɔl ed (maykrosɛfali).
• Fɔ gɛt big ed (macrocephaly).
• di wata we de kכmכt pasmak na di bren (haydrosefalus).
• Di tin dɛn we nɔ kin apin na di fes .
• di tit abnכmaliti dεm (fכ egzampl, fכ gεt wan sεntri insaysכr).
• Klɛft lip ɛn/ɔ palata.
• I nɔ kin izi fɔ kɔntrol di bɔdi in tɛmpracha, di at rit, ɛn di we aw i de blo.
• I nɔ izi fɔ it.

Karakteristik fɔ Alobar HPE

Dis na di kayn wae wae kin pasmak, so de sik kin tranga pasmak:

• Fɔ gɛt wan yay (sayklopia), fɔ gɛt yay we dɛn put tu nia togɛda (ɛthmocephaly), ɔ we nɔ gɛt yay atɔl (anophthalmia).
• fכ gεt rili sכm aybol dεm (maykroftalmia) εn wan nos we lεk tyub (proboscis).
• flat nos wit klos-sεt yay (orbital hypotelorism) כ wan cleft lip we de apin na di midul pan di lip (midya cleft lip) כ na di tu say dεm (baylateral cleft lip).

Karakteristik fɔ Semilobar HPE

• di yay dεm we de nia di ples (orbital hypotelorism), di yay dεm we rili sכm (maycrophthalmia), כ wan כ mכr yay dεm (anophthalmia).
• Flat we di brij ɛn di tip na di nos de flat.
• Wan singl nos.
• Midyan klif lip ɔ baylatarɛl klif lip.
• Klɛft palata.

Karakta dɛn fɔ Lobar HPE

Dis na de kayn wae nɔr kin pasmak, bɔt yu kin si dɛn sayn ya:

• Baylatarɛl klif lip.
• Klos-ap fɔ di yay dɛn.
• Nos we flat ɔ we dɔn sink.

dis kכndyushכn we dεn kכl holoprosencephaly kin apin bak as pat pan sεvεra difrεn jεnεtik sεndrכm dεm. Ɛni wan pan dɛn sik ya gɛt in yon sayn ɛn sayn dɛm.

Wetin kin mek pɔsin gɛt holoprosencephaly (HPE)?

nכmal wan, di pikin in bren de sheb to tu εmisfya dεm we i de divεlכp. Holoprosencephaly (HPE) kin apin we di fכnt pat pan di bren, di prosencephalon, nכ de separet fayn fayn wan insay di rayt εn lεft εmisfya. dat min se insted fכ di lεft εn rayt sayd na di fכnt pat na di bren fכ separet kכmplit, wan abnכmal kכnεkshכn de bitwin di tu.

sכm spεshal wan, holoprosεnsεfali kin kכz bay:

• mכtεshכn kin apin insay at le 14 difrεn jin dεm .
• Di tin dɛn we nɔ kin apin to di kromozom dɛn .
• Sɔm jenɛtik sindrom dɛn .

Bɔt bɔku tɛm, dɔktɔ dɛn nɔ kin ebul fɔ fɛn di rayt rizin.

Di chenj dɛn we de apin na di jɛnɛtiks

jεnεtik mכtεshכn na we yu de chenj di we aw yu DNA de sikyud. dis sikεns fכ DNA de gi yu sεl dεm di infכmeshכn we dεn nid fכ du dεn wok. So, if pat pan wan sikwins DNA nɔ kɔmplit ɔ i dɔn pwɛl, yu kin gɛt sayn dɛn fɔ wan jenɛtik kɔndishɔn.

di pikin kin gεt wan jεnεtik mכtεshכn frכm wan כ כl tu in mama εn papa, i dipכnt pan aw dεn pas di mכtεshכn. Bɔt sɔm muteshon dɛn kin apin bak randomly, we min se nɔbɔdi nɔ de na di famili we gɛt histri bɔt di mutation.

Sayɛnsman dɛn dɔn sho se di chenj dɛn we de apin na dɛn jin ya gɛt sɔntin fɔ du wit di sik (HPE):

• `SHH`
• `SIKS3`
• `TGIF1`
• `ZIC2`
• `PTCH1`
• `FOXH1`
• `NODAL`
• `KDƆN`
• `FGF8`
• `GLI2`

dis mכtεshכn dεm de mek di jin dεm εn di protin dεm we dεn de mek nכ de wok fayn. dis na wetin de afekt di divεlכpmεnt fכ di fetal bren εn de mek holoprosencephaly.

Di kromozom dɛn we nɔ de wok fayn

Wi ɔl gɛt 46 kromozom dɛn na wi sɛl dɛn, we dɛn arenj insay 23 tu tu. Dɛn kromozom ya kin kɛr wi DNA. Fɔ tɔk am simpul wan, dɛn gɛt di tin dɛn we wi bɔdi fɔ gro ɛn wok. Wi kin gɛt wan sɛt fɔ kromozom frɔm wi mama ɛn wan sɛt frɔm wi papa.

lεk wan tכd pan di pikin dεm we dεn bכn wit holoprosencephaly gεt wan kromozom abnכmaliti. di kromozom abnכmaliti we kin kכmכn wit HPE na di prεsεns fכ tri kכpi kromozom 13, we dεn kכl trisomy 13. Trisomy 18 (tri kכpi fכ kromozom 18) εn triploidy (di prεsεns fכ 69 kromozom dεm na wan sεl insted fכ di nכmal 46) kin mek HPE bak.

Jɛnɛtik sindrom dɛn

Sɔntɛnde, holoprosencephaly kin apin as pat pan sɔm jɛnɛtik sindrom dɛm we kin mek ɔda mɛrɛsin prɔblɛm dɛn apat frɔm HPE.

Sɔm pan di jenɛtik sindrom dɛm wae gɛt fɔ du wit HPE na:

• `(Hartsfield sindrom)`
• `(Kallman sindrom tu)`
• `(Steinfeld sindrom)`
• `(Smit-Lemli-Opitz sindrom)`
• `(Stromme sindrom)`

Aw dɛn kin no se pɔsin gɛt holoprosencephaly (HPE)?

Bɔku tɛm, dɔktɔ dɛn kin no di sik we dɛn kɔl holoprosencephaly (HPE), mɔ di wan dɛn we rili bad, bifo dɛn bɔn pikin, ɛn dɛn kin yuz ɔltrasɔund skan we dɛn kin du bifo dɛn bɔn pikin. dεn kin no di kכndyushכn bak bifo dεn bכn wit di fetal MRI (Magnetic Resonance Imaging) skan.

Pan ɔl we dɛn tɛst ya we dɛn kin du bifo dɛn bɔn pikin kin no HPE, bɔku tɛm dɛn kin no HPE afta dɛn bɔn di pikin , we di fes nɔ fayn ɔ di nyurolɔjik prɔblɛm dɛn kin bigin fɔ apia. afta dat dεn kin du imej tεst dεm fכ di ed fכ kכnfכm di diagnosis.

di pikin dεm we gεt di kayn holoprosencephaly we rili mild, dεn nכ kin no di sik te dεn ol lεk wan ia. insay dεn kayn kes dεm ya, we di divεlכpmεnt delay kin bi wan clue fכ se prכblεm kin de wit di nεv sεstem. Dɔn di dɔktɔ dɛn go ɔda fɔ mek dɛn du tɛst fɔ mek dɛn tek pikchɔ dɛn na di bren.

Test dɛn fɔ no if pɔsin gɛt di sik

Dɔktɔ dɛn kin yuz dɛn imej tɛst ya fɔ no if i gɛt holoprosencephaly afta dɛn bɔn di pikin:

• Ɛd ɔltra saund: Ɔltra saund (dɛn kin kɔl am bak sonografi) na wan tɛst we nɔ de mek pɔsin fil pen, we nɔ de ambɔg pɔsin we de yuz ay frikyuɛnsi sawnd wev fɔ mek layf imej ɔ fim dɛn we de sho di tisu dɛn lɛk di ɔgan dɛn we de insay ɔ di blɔd vesel dɛn.
• Magnɛtik rɛsɔnans imej (MRI) bren skan:MRI skan na tɛst bak we nɔ de mek pɔsin fil pen. I kin mek rili klia pikchɔ dɛn bɔt di strɔkchɔ ɛn tisu dɛn na yu pikin in bren. MRI kin yuz big magnet, redio wev, ɛn kɔmpyuta. I nɔ de yuz X-ray (rɛdyushɔn).
• Head computed tomography (CT) scan: CT scan na tɛst we dɛn kin yuz X-ray ɛn kɔmpyuta fɔ mek bɔku tri-dimɛnshɔnal (3D) pikchɔ dɛn fɔ di bɔdi pat we dɛn de chɛk (insay dis kes, yu pikin in ed ɛn bren).

If i pɔsibul, dɔktɔ dɛn go du DNA stɔdi, inklud di kromozom analisis, saytojɛnɛtik ɛn mɔlikul tɛst, fɔ no di rayt kɔz fɔ HPE.

If we dɛn tɛst yu jɛnɛtiks, yu si se yu gɛt prɔblɛm wit yu kromozom ɔ yu jenɛtiks we gɛt fɔ du wit holoprosencephaly, yu dɔktɔ go tɛl yu fɔ go to yu jenɛtik advays if yu de plan fɔ bɔn ɔda pikin.

Wetin na di tritmɛnt dɛm fɔ holoprosencephaly (HPE)?

I sɔri fɔ no se naw, no mɛrɛsin ɔ big tritmɛnt nɔ de fɔ di sik we dɛn kɔl holoprosencephaly (HPE). Bifo dat, dɔktɔ dɛn kin trit ɛni pikin wit HPE bay di patikyula sayn dɛn we dɛn gɛt. Dis min se di tritmɛnt we dɛn kin pik kin difrɛn frɔm wan pikin to ɔda pikin.

Dis tritmɛnt kin nid fɔ mek wan tim we gɛt difrɛn spɛshal pipul dɛn wok togɛda, lɛk:

• Di dɔktɔ dɛn we de mɛn pikin dɛn
• Di wan dɛn we de stɔdi bɔt nyurolɔji
• Ɛndokrinɔlɔjis dɛn
• Plastik ɔspitul dɔktɔ dɛn
• Di wan dɛn we de mɛn pipul dɛn we de mɛn dɛn wok ɛn di wan dɛn we de mɛn dɛn bɔdi
• Di tim we de kia fɔ di sik we dɛn kɔl palliativ kia
• Komplex kia tim

Pipul dɛn lɛk dat kin de insay.

Kɔmɔn tritmɛnt dɛn

Na sɔm pan di tritmɛnt dɛm wae dɛn kin yuse fɔ HPE:

• Anti- sik fɔ mek yu nɔ gɛt sik, fɔ ridyus, ɔ fɔ kɔntrol yu sik.
• If yu pikin gɛt haydrosɛfalɔs, dɛn kin trit am wit ventriculoperitoneal (VP) shunt.
• Mεdikeshכn εn wok εn fyzikal tεrapi kin εp wit muvmεnt dizayd lεk mכsul dεm stiffness (spasticity) εn invכlכntary muvmεnt (dystonia).
• Plastik rikostrɔktiv ɔpreshɔn fɔ cleft lip ɛn palata ɔ ɔda fes ficha dɛn.
• Mεdikeshכn dεm fכ trit di hכmon imbalans na di pituitary gland.
• Fɔ tek stɛp fɔ mek di pikin dɛn we gɛt prɔblɛm wit it fɔ it bɛtɛ. fכ egzampl, fכ it tru wan tכb insay di bεlε (gastrostomy tube - G-tube).

Dɛn kin du ɔl dis fɔ mek di pikin gɛt di bɛst kwaliti fɔ liv.

Yu tink se dɛn kin mek dɛn nɔ gɛt holoprosencephaly (HPE)?

Bɔt i sɔri fɔ no se, ɔloprosɛnsɛfali (HPE) kin apinBɔku kes dɛn nɔ kin ebul fɔ stɔp. dis na biכs dεn kin kכz fכ "hiden" inhεrit jεnεtik prכblεm dεm. If yu de plan fɔ bɔn pikin, i go fayn fɔ tɔk to yu dɔktɔ bɔt aw fɔ tɛst yu jenɛtiks fɔ ɔndastand di risk we yu pikin gɛt fɔ gɛt jenɛtik kɔndishɔn ɔ inhɛrit jin muteshɔn, lɛk HPE.

Bɔt sayɛnsman dɛn dɔn no sɔm tin dɛn we kin mek di pikin gɛt holoprosencephaly. Dɛn tin ya na:

• Fɔ gɛt dayabitis: If yu bin gɛt tayp 1 ɔ tayp 2 dayabitis bifo yu gɛt bɛlɛ, yu kin gɛt mɔ risk fɔ gɛt pikin we gɛt HPE. Dis nɔ fɔ kɔnfyus wit gestational dayabitis, we kin apin we uman gɛt bɛlɛ.
• fכlet (fכlik asid) we dεn nכ de: fכlet, we na di nכmal fכm fכ vaytam in B9, implεnt fכ di pikin in divεlכpmεnt fכ hεlty, spεshal wan di bren εn di spεnal kכd. If yu nɔ gɛt folate bifo ɛn we yu gɛt bɛlɛ, dat kin mek yu gɛt pikin we gɛt HPE.
• di εksposhכn to tεratojen dεm: Tεratojen na tin dεm כ tin dεm we de mek prכblεm wit di pikin in divεlכpmεnt εn we de mek i bכn difεkt. If yu gɛt teratogens, lɛk ɛtɛnol (alcohol), retinoic acid, ɛn mycotoxins (mold toxins) frɔm it, i kin mek yu gɛt pikin we gɛt holoprosencephaly.

So, i rili impɔtant fɔ fala wɛlbɔdi layf, it fayn it, ɛn fala dɔktɔ advays we yu gɛt bɛlɛ ɛn bifo yu gɛt bɛlɛ.

Wetin na di prɔgnosis fɔ holoprosencephaly (HPE)?

Di lukin-grɔn, ɔ prɔgnosis, fɔ holoprosencephaly (HPE) kin difrɛn difrɛn wan bay aw di sik siriɔs ɛn di patikyula kɔz.

Di luk fɔ mɔdaret to siriɔs HPE kin jɔs pwɛl. Na smɔl pikin dɛn nɔmɔ we gɛt mɔdaret to siriɔs HPE kin liv te dɛn big. Pikin dɛn we gɛt smɔl to mɔdaret HPE kin liv te dɛn big, bɔt bɔku tɛm dɛn kin gɛt fɔ liv wit mɛdikal kɔmplikeshɔn dɛn we gɛt fɔ du wit HPE.

Bɔku pikin dɛn we gɛt holoprosencephaly nid mɛrɛsin ɛn tritmɛnt ɛvride fɔ mek dɛn nɔ gɛt sik ɛn fɔ trit ɔda prɔblɛm dɛn.

Di layf we pɔsin kin liv

Di layf we pɔsin we gɛt holoprosencephaly (HPE) kin liv kin dipen pan di kayn HPE we i gɛt ɛn di ɔndalayn kɔz fɔ di sik.

di pikin dεm we gεt Alobar HPE (di mכst siriכs fכm) kin day as dεn bכn pikin dεm we dεn bכn, jכs afta dεn bכn dεm כ insay di fכs siks mכnt dεm we dεn bכn.

mכr dan 50% pan di pikin dεm we gεt sεmilobar כ lobar HPE, εn we nכ gεt כda כgan abnכmaliti, de liv fכ at le 12 mכnt.

Pikin dɛm we gɛt smɔl kes dɛm fɔ HPE kin liv te dɛn big.

If mi pikin gɛt holoprosencephaly (HPE), wetin a fɔ ɛkspɛkt?

Dis rili impɔtant. Mɛmba se nɔ tu pikin dɛn we gɛt holoprosencephaly (HPE) kin afɛkt di sem we. No we nɔ de fɔ no fɔ tru aw yu pikin go afɛkt. Di bɛst tin we yu kin du fɔ rɛdi fɔ tumara bambay na fɔ tɔk to spɛshal pipul dɛn we de du risach ɛn trit holoprosencephaly. Dɛn kin gi yu mɔ infɔmeshɔn bɔt dis.

Aw a go kia fɔ mi pikin we gɛt holoprosencephaly (HPE)?

Fɔ ɛp fɔ kia fɔ yu pikin we gɛt holoprosencephaly (HPE), fala dɛn advays ya frɔm dɛn dɔktɔ dɛn:

• Gi ɛni mɛrɛsin we dɛn gi yu lɛk aw dɛn tɛl yu fɔ gi am.
• Rifεr fכ divεlכpmεnt asesmεnt εn tεrapi dεm.
• Mek shɔ se yu atɛnd ɔl di fɔlɔp mɛdikal visit dɛn.

Holoprosensephaly kin mek yu gɛt prɔblɛm wit yu maynd, nyurolɔjik, ɛn/ɔ motoka. Bɔrku pikin dɛm wae gɛt HPE gɛt prɔblɛm wit dɛn divɛlɔpmɛnt ɛn dɛn kin nid ɛp fɔ du tin dɛm ɛvride ɔlsay na dɛn layf.

Yu pikin in mɛdikal tim kin ansa yu kwɛstyɔn dɛn ɛn gi yu sɔpɔt. Dɛn kin dayrɛkt yu bak to sɔpɔt grup dɛn na yu eria ɔ na di Intanɛt. Mɛmba se nɔto yu wangren de.

Ustɛm a fɔ go to mi pikin in dɔktɔ?

If dɛn dɔn no se yu pikin gɛt holoprosencephaly (HPE), dɛn go nid fɔ si dɛn mɛdikal tim ɔltɛm fɔ mek shɔ se dɛn tritmɛnt de wok ɛn fɔ no aw dɛn de divɛlɔp.

Fɔ no se yu pikin gɛt holoprosencephaly kin tranga fɔ bia wit am. Bɔt no se nɔto yu wangren de. Bɔku tin dɛn de fɔ ɛp yu ɛn yu famili. E fayn fɔ tɔk to dɔktɔ wae sabi bɔt dis sik. Dis go ɛp yu fɔ lan mɔ bɔt aw yu pikin go afɛkt ɛn aw fɔ rɛdi fɔ am.

Fɔ dɔn, tin dɛn fɔ mɛmba (Take-Home Message) .

Holoprosencephaly (HPE) na wan komplex difεkt we pikin de bכn we de apin we di pikin in bren nכ de sεparayt fayn fayn wan to tu εmisfya dεm na di bεlε.

• Difrɛn kayn ɛn di kayn we aw i kin tranga , so di sayn dɛm kin difrɛn frɔm wan pikin to ɔda pikin.
• Bɔku tɛm, di tin dɛn we kin mek pɔsin gɛt jɛnɛtiks ɛn di tin dɛn we nɔ kin apin na di kromozom kin apin, bɔt sɔntɛnde dɛn nɔ kin ebul fɔ fɛn di tin we kin mek i apin.
• Pan ɔl we dɛn kin no am bifo dɛn bɔn am wit ɔltra saund ɔ MRI, bɔku tɛm dɛn kin no am afta dɛn bɔn am.
• No patikyula mɛrɛsin nɔ de , bɔt difrɛn tritmɛnt dɛn de fɔ kɔntrol di sik dɛn ɛn sɔpɔt di pikin.
• Di we aw pipul dɛn kin si tin kin difrɛn difrɛn wan bay aw di sik kin tranga. If i nɔ tu te, pikin dɛn kin liv te dɛn big.
• If yu gɛt bɛlɛ ɔ yu de plan fɔ gɛt bɛlɛ, tek tɛm wit tin dɛn lɛk fɔ kɔntrol yu dayabitis ɛn fɔ tek fɔlik asid.
• Nɔto yu wan de pan dis kayn tin. Yu kin gɛt ɛp frɔm dɔktɔ dɛn, advaysa dɛn, ɛn sɔpɔt grup dɛn. Di kɔrɛkt infɔmeshɔn ɛn sɔpɔt rili impɔtant.

` Holoprosencephaly, HPE, bren dizayd, bכn difεkt, fetal divεlכpmεnt, jεnεtik sik, kromozom abnכmaliti, bεlε hεlth, pikin hεlth