He hopohopo iki paha kou a he kānalua paha e pili ana i ka ulu ʻana o kāu keiki liʻiliʻi? I kekahi manawa, ʻoi aku ka hopohopo o kākou ke lohe kākou i nā inoa hou mai nā kauka, ʻeā? ʻĀ, i kēia lā e kamaʻilio kākou e pili ana i kahi maʻi lolo laha ʻole āu i lohe ʻole ai, akā he mea pono ke ʻike. Ua kapa ʻia kēia ʻo Schizencephaly.
He aha ka Schizencephaly?
I ka ʻōlelo maʻalahi, ʻo ka schizencephaly kahi ʻano ʻē o ka lolo e kū mai ana i ka wā hānau, ʻo ia hoʻi, ke komo mai kahi pēpē i kēia ao. ʻElua ʻāpana o ko kākou lolo i kapa ʻia ʻo cerebral hemispheres , ʻo ia hoʻi, ʻo ka ʻaoʻao ʻākau a me ka ʻaoʻao hema. ʻO kēia nā ʻāpana e hoʻomalu i kā kākou mau mākau neʻe e like me ka ʻōlelo ʻana a me ka hele wāwae ʻana, ko kākou ʻano noʻonoʻo ʻana, ʻo ia hoʻi, ka hana noʻonoʻo , ko kākou mau manaʻo , ka lohe ʻana , a me ka ʻike ʻana , a me nā mea nui ʻē aʻe. I ka schizencephaly, he māwae a lua paha (cleft) e hana ʻia ma kēia mau hemispheres cerebral, ʻo ia hoʻi, ma kēia mau ʻaoʻao o ka lolo. Hiki i kēia māwae ke noho ma kekahi ʻaoʻao o ka lolo (`unilateral`), a i ʻole hiki ke noho ma nā ʻaoʻao ʻelua (`bilateral`).
E noʻonoʻo, aia kahi wai i kapa ʻia ʻo ka wai cerebrospinal e pale a hānai i ko kākou lolo. Eia kekahi, aia kekahi ʻano ʻiʻo i kapa ʻia ʻo ka hina hina . Kōkua kēia i ka hoʻomalu ʻana i kā mākou neʻe ʻana, ka hoʻomanaʻo, a me nā manaʻo. I kēia manawa, i loko o kēlā hakahaka, ua hoʻopiha ʻia kēia wai cerebrospinal a me ka hina hina. Eia naʻe, inā hōʻiliʻili nui kēia mau mea, kū mai nā pilikia, ʻo ia hoʻi, hoʻomaka nā hōʻailona e ʻike ʻia. No ka laʻana, hiki ke lohi ka ulu ʻana o ka pēpē, hiki ke loaʻa ka maʻi lolo , a i ʻole liʻiliʻi paha ka nui o ke poʻo .
He aha nā ʻano nui o ka schizencephaly?
ʻElua ʻano nui o kēia maʻi, ʻo Schizencephaly.
- ʻO ka schizencephaly lehelehe hāmama: I kēia hihia, hoʻolōʻihi ka māwae mai waho o ka lolo a hiki i loko o nā ventricles , nā keʻena i loko o ka lolo i piha i ka wai cerebrospinal. ʻO ke ʻano kēia he ʻoi aku ka nui a me ka hohonu o ka māwae.
- ʻO ka schizencephaly lehelehe pani: I kēia ʻano, ʻoi aku ka pōkole o ka māwae. ʻAʻole ia e hoʻolōʻihi a hiki i nā ventricles. I kekahi manawa, hiki ke ʻike ʻole ʻia kēia ʻano.
Pehea ka maʻamau o kēia ʻano?
He maʻi laha ʻole ka Schizencephaly. ʻAʻole ia he mea e hana ʻia i nā poʻe he nui. Ma ke ʻano helu, hoʻopilikia ia ma kahi o 1.5 o kēlā me kēia 100,000 pēpē i hānau ʻia ma ʻAmelika Hui Pū ʻIa. Ma United Kingdom, hoʻopilikia ia ma kahi o 1.48 o kēlā me kēia 100,000 pēpē. No laila hiki iā ʻoe ke ʻike i ke ʻano o kēia mea laha ʻole.
He aha nā hōʻailona o ka Schizencephaly?
Hiki ke ʻokoʻa nā hōʻailona o kēia maʻi mai kēlā kanaka a kēia kanaka, ma muli o ka nui a me kahi o ka ʻeha o ka lolo. Eia kekahi mau hōʻailona maʻamau:
- ʻUmi ka nui o ke poʻo ma mua o ka maʻamau.
- Ka nāwaliwali o nā ʻiʻo a i ʻole ka nalowale o ka ikaika (hemiparesis). Manaʻo ia me he mea lā ua lolo kahi lālā.
- ʻOʻoleʻa a paʻakikī paha nā ʻiʻo (`(spasticity)`).
- Ka maʻi lolo : ʻO ke ʻano kēia ua maʻi lolo kekahi hapa a i ʻole ke kino holoʻokoʻa.
- Nā kūlana epileptic , ʻo ia hoʻi, nā hopu ʻana .
- ʻO ka nui o ka wai cerebrospinal (CSF) i loko o ka lolo ua kapa ʻia ʻo hydrocephalus .
- ʻO kahi loli i ke kūlana o nā maka , e like me ka strabismus .
Eia kekahi, hiki i ka schizencephaly ke hoʻopaneʻe i ka ulu ʻana o nā keiki . ʻO ke ʻano kēia, ʻoi aku ka lōʻihi o ka manawa e aʻo ai kēia mau keiki a hana i nā mea a ke keiki e hoʻomaka mau ai e hana i kekahi mau makahiki.
- E neʻe a puni iā ʻoe iho, e hoʻopā i nā mea (nā mākau neʻe nui a maikaʻi).
- E ʻōlelo a kamaʻilio me nā poʻe ʻē aʻe (nā mākau ʻōlelo a me ka ʻōlelo).
- E aʻo a hoʻomanaʻo i nā mea hou (nā mākau noʻonoʻo).
- E pāʻani a launa pū me nā poʻe ʻē aʻe (nā mākau pilikanaka a me ka naʻau).
Akā e hoʻomanaʻo, ʻo kekahi mau keiki me ka schizencephaly lehelehe pani i ʻōlelo ʻia ma mua ʻaʻole paha e hōʻike i kekahi mau hōʻailona .
He aha nā kumu o ka Schizencephaly?
ʻO kaʻoiaʻiʻo, ʻaʻole ʻike ʻia ke kumu pololei o Schizencephaly . Eia nō naʻe, hōʻike ka noiʻi e hiki ke hana ʻia ma muli o ka ʻike ʻana i kekahi mau mea i ka wā o ka ulu ʻana o ka fetal .
- ʻO kekahi mau lāʻau lapaʻau , no ka laʻana, nā lāʻau hoʻokahe koko e like me Warfarin.
- ʻO kekahi mau lāʻau lapaʻau , no ka laʻana `(Cocaine)`.
- ʻO kekahi mau maʻi viral , no ka laʻana '(Zika virus)' a i ʻole '(Cytomegalovirus)'.
- Hiki paha ke kumu o kekahi mau pilikia e kū mai ana i ka wā o kahi hoʻokolohua i kapa ʻia ʻo "Amniocentesis" i hana ʻia i ka wā hāpai.
Eia kekahi, hiki i nā loli genetic (mutations) ke hoʻopilikia i ke ʻano o ka ulu ʻana o ka lolo o kahi fetus. ʻO nā loli genetic nā loli i loko o kā mākou DNA. Hiki ke hana pinepine ʻia kēia mau mea me ka manaʻo ʻole, ʻo ia hoʻi, ʻaʻohe mea o ka ʻohana i loaʻa i ke ʻano ma mua, akā hiki ke hana koke ʻia. He mea kākaʻikahi loa, hiki ke hoʻoili ʻia ke ʻano mai kēlā hanauna a i kēia hanauna.
ʻO wai ka mea i pilikia nui no kēia maʻi?
Inā hana kekahi mau mea i ka wā hāpai, hiki ke piʻi iki aʻe ka pilikia o ka loaʻa ʻana o kahi pēpē me ka schizencephaly.
- Ka maʻi hoʻohana ʻona.
- Ke hoʻomohala nei i kahi maʻi viral (e like me, Cytomegalovirus a i ʻole Zika virus).
- Ka haʻahaʻa o ka oxygen i loko o ke koko (hypoxia).
- Hoʻāʻo amniocentesis .
- Ke ʻike nei i kekahi haʻalulu a ʻeha paha (Trauma) .
- Ke hoʻohana nei i ka lāʻau lapaʻau "(Warfarin)" i kauoha ʻia e ke kauka.
Ua ʻōlelo ʻia hoʻi ʻo ka makahiki o ka makuahine, ma lalo o 25 , e hoʻohui i kekahi pilikia i kēia maʻi.
Hiki i nā kūlana ʻē aʻe ke hana me ka schizencephaly?
ʻAe, i kekahi manawa ke ʻike nā kauka i ka schizencephaly, ke ʻimi nei lākou i nā kūlana ʻē aʻe. Eia kekahi mau laʻana:
- ʻO ka lolo lolo (`(Cerebral Palsy)`)
- ʻO ka agenesis o ke corpus callosum ( kahi ʻāpana e like me ke alahaka o ka lolo e hoʻopili ai i nā hapalua ʻelua o ka lolo)
- ʻO ka dysplasia Septo-optic ( kahi kūlana e hoʻoulu ai i ka ʻike a me nā pilikia hormonal)
- ʻO nā cysts Arachnoid ( nā cysts i piha i ka wai ma waena o nā membrane e uhi ana i ka lolo)
Pehea e ʻike ai i kēia maʻi?
I ka manawa pinepine, hiki i nā kauka ke ʻike i nā hōʻailona o ka schizencephaly i ka wā o nā scan ultrasound prenatal ma hope o 20 mau pule o ka hāpai ʻana. Eia nō naʻe, hana ʻia ka ʻike pololei ma hope o ka hānau ʻana o ke pēpē . Hana ʻia kēia me ka hoʻohana ʻana i kahi scan MRI (Magnetic Resonance Imaging) a i ʻole kahi scan CT (Computed Tomography) . Hiki i kēia mau scan ke hōʻike maopopo i ka nui o ka hemahema o ka lolo a me ke ʻano o ia mea.
Eia kekahi, hiki i ke kauka o kāu keiki ke kauoha i kahi hoʻāʻo genetic . E nānā kēia i nā loli i ka DNA e hiki ke hoʻoulu i ke kūlana.
He aha nā lāʻau lapaʻau no ka Schizencephaly?
ʻO ke kumu nui o ka mālama ʻana no ka schizencephaly, ʻo ia ke kāohi a me ka hōʻemi ʻana i nā hōʻailona , ʻoiai ʻaʻole ia he maʻi hiki ke ho'ōla piha ʻia. ʻO nā koho lapaʻau e komo pū me:
- Ke hāʻawi ʻana i nā lāʻau lapaʻau e pale aku ai i nā hopu ʻana o ka epileptic .
- ʻO ke kūlana i kapa ʻia ʻo hydrocephalus , ʻo ia hoʻi ka wā e hōʻiliʻili ai ka wai i loko o ka lolo, pono ke ʻoki ʻana e hoʻokomo i kahi shunt a i ʻole ka tube . Hoʻohuli kēia i ka wai keu.
- Hana ʻia ke ʻoki kino i kekahi manawa e hōʻemi i ke kaomi i hoʻokumu ʻia e ka wai keu i loko o ka lolo.
- Hiki i nā lāʻau lapaʻau e like me ka hoʻoikaika kino , ka hoʻoikaika hana, a me/a i ʻole ka hoʻoikaika ʻōlelo ke kōkua nui i ka hoʻomaikaʻi ʻana i nā hiki o ke keiki.
- Ke komo nei lākou i nā papahana hoʻonaʻauao i kākoʻo ʻia e ke kula.
Aia kekahi mau hopena ʻaoʻao o ka lāʻau lapaʻau?
ʻOi aku ka maikaʻi o ke kamaʻilio ʻana me kāu kauka e pili ana i nā hopena ʻaoʻao o ka mālama ʻana i ka schizencephaly. Nui nā ʻano hopena ʻaoʻao e hiki ke loaʻa me ke ʻoki ʻana a me ka lāʻau lapaʻau. E loli kēia mau mea ma muli o ke ʻano o ka mālama ʻana iā ʻoe a i ʻole kāu keiki.
He aha ke kūlana no kekahi me ka schizencephaly?
ʻOkoʻa loa ka nānā ʻana no kekahi me ka schizencephaly ma muli o ka nui a me kahi o nā ʻeha o ka lolo . Loaʻa paha i kekahi poʻe kahi ʻeha liʻiliʻi wale nō, hiki ke hōʻike ʻole i nā hōʻailona a alakaʻi i kahi ola maʻamau. Eia nō naʻe, loaʻa paha i kekahi poʻe kahi ʻeha nui aʻe, hiki ke hōʻike i nā hōʻailona hou aʻe a pono paha ke kākoʻo no ke ola holoʻokoʻa.
Pehea lā ke ola holoʻokoʻa?
ʻAʻole pili pololei ka Schizencephaly i kou ola . ʻO ia hoʻi, ʻaʻole ia e hoʻopōkole i kou manaʻolana ola. Eia nō naʻe, hiki i kekahi mau pilikia o ke kūlana, e like me nā hopu ʻana i kaohi ʻole ʻia a i ʻole hydrocephalus, ke hoʻoweliweli i ke ola .
Hiki ke pale ʻia kēia kūlana?
ʻOiaʻiʻo, ʻaʻohe ala e pale aku ai i ka schizencephaly. No ka mea, aia kekahi mau kumu ma waho o ko mākou mana. Eia nō naʻe, ma ka mālama pono ʻana iā ʻoe iho i ka wā hāpai , hiki iā ʻoe ke hōʻemi i ka pilikia o kāu pēpē e loaʻa ana i kēia maʻi i kekahi ʻano.
- E ʻike pinepine i ke kauka a e nānā ʻia ʻoe.
- E hana i nā hana e pono ai e pale aku iā ʻoe iho mai nā maʻi .
- E kamaʻilio me kāu kauka e pili ana i nā lāʻau lapaʻau āu e lawe nei. ʻAʻole kūpono kekahi mau lāʻau lapaʻau i ka wā hāpai.
- E pale loa i nā mea e hōʻino ai i ka pēpē i loko o ka ʻōpū, e like me nā lāʻau lapaʻau.
- He mea maikaʻi nō hoʻi inā hiki iā ʻoe ke hālāwai me kekahi kākā'ōlelo genetic e aʻo e pili ana i ka pilikia o ka loaʻa ʻana o kahi maʻi genetic i kahi keiki.
Āhea ʻoe e ʻike ai i ke kauka?
Inā loaʻa iā ʻoe a i kāu keiki paha kekahi o kēia mau hōʻailona, e ʻike koke i ke kauka:
- Ka loli ʻana o ke kani o nā ʻiʻo (paʻa a nāwaliwali paha).
- Inā ʻaʻole hiki iā ʻoe ke hoʻoneʻe i kahi ʻāpana o kou kino (e like me ka maʻi lolo).
- Inā lohi ke keiki i ka hiki ʻana i nā pae hoʻomohala kūpono no ko lākou mau makahiki.
ʻO ka mea nui loa: Inā loaʻa iā ʻoe a i ʻole kāu keiki kahi maʻi epileptic, e kāhea koke aku i ka 1990 Suwaseriya Ambulance Service a i ʻole e hele i ka haukapila kokoke loa.
He aha nā nīnau e pono iaʻu e nīnau aku i kaʻu kauka?
Ke ʻike ʻoe ua loaʻa i kāu keiki ka Schizencephaly, nui paha kāu mau nīnau. He manaʻo maikaʻi e nīnau i kāu kauka i nā mea e like me:
- He aha ke ʻano o ka schizencephaly i loaʻa i kaʻu keiki?
- Pehea lā wau e kākoʻo ai i kaʻu keiki?
- He aha nā pilikia e pono ai mākou e makaʻala nui?
- Pono anei kaʻu keiki i ke ʻoki kino?
- He aha nā koho lapaʻau āu e paipai nei?
- Aia kekahi mau hopena ʻaoʻao o ka lāʻau lapaʻau?
- Aia kekahi mau hui kākoʻo no nā mākua e mālama ana i nā keiki e like me kēia?
Nā mea e hoʻomanaʻo ai i ka pōkole
He mea maʻamau ka manaʻo kaumaha ke aʻo ʻoe e pili ana i kēia maʻi neurological kakaʻikahi, ʻo schizencephaly, a inā paha ʻoe, kāu keiki, a i ʻole kekahi āu e aloha ai. ʻOkoʻa ka Schizencephaly a me kona hopena iā ʻoe ma muli o ka nui o ka lolo o ka lolo. ʻAʻohe ou hōʻailona iki, a i ʻole pono paha ʻoe i ke kākoʻo i kou ola a pau. ʻAʻole pili pololei ke ʻano i kou ola, a ʻaʻole ia e hoʻopilikia i kou hiki ke hoʻokō i kāu mau pahuhopu o kēlā me kēia lā. Eia nō naʻe, hiki i kekahi mau mea ke paʻakikī ma mua o nā mea ʻē aʻe. Hiki i kāu hui lapaʻau ke kōkua iā ʻoe e aʻo hou e pili ana i ke ʻano a kūkākūkā i nā koho lapaʻau e hiki ke kōkua iā ʻoe e ʻoluʻolu. Mai manaʻo mehameha, a e kiʻi i ke kōkua āu e pono ai.
ʻO Schizencephaly, māwae lolo, nā ʻano ʻē o ka lolo, nā maʻi hānau mua, nā maʻi kamaliʻi, ka lohi o ka ulu ʻana, ka maʻi epilepsy, hydrocephalus, nā maʻi genetic











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