ʻAʻole paha ʻoe i lohe i kēia inoa ma mua. He kīnā hānau laha ʻole a koʻikoʻi loa ʻo Cyclopia. Hoʻokumu ʻia kēia maʻi e kahi ʻano ʻē i ka ulu ʻana o ka lolo o ka pēpē i nā pule mua o ka hāpai ʻana . Ma kēia ʻatikala, e kamaʻilio mākou e pili ana i kēia maʻi. ʻOiai he mea laha ʻole loa ia, he mea nui e makaʻala iā ia.
He aha maoli ʻo Cyclopia?
ʻO ke keiki me ke ʻano i kapa ʻia ʻo cyclopia ua hānau ʻia me hoʻokahi wale nō maka. Ma waho aʻe o ka maka, aia ma waenakonu o ka maka, ʻaʻohe ihu o kēia mau keiki. Akā, hiki ke ʻike ʻia kahi ʻano like me ka paipu (proboscis) ma luna o ka maka.
ʻO Alobar Holoprosencephaly ke kumu o kēia maʻi, ke ʻano koʻikoʻi loa o ka maʻi ulu lolo i kapa ʻia ʻo Holoprosencephaly . I ka ʻōlelo maʻalahi, i nā lā mua o ka hāpai ʻana, pono e ulu ka lolo o ka pēpē i ʻelua hemispheres, ka ʻākau a me ka hema. Akā i kēia hihia, ʻaʻole hana pono kēlā mahele ʻana. Noho ka lolo ma ke ʻano he puʻupuʻu hoʻokahi. Ma muli o kēia pilikia lolo, ʻaʻole ulu pono nā ʻāpana ʻē aʻe o ka maka, ʻoi aku hoʻi nā maka a me ka ihu.
ʻO ka mea nui loa, he maʻi laha ʻole ka cyclopia. Hoʻokahi wale nō ia i loko o 100,000 mau pēpē hānau hou .
ʻO nā loli ʻē aʻe o ka helehelena e hiki ke hana ma muli o kēia ʻano:
- ʻAʻohe ihu.
- Loaʻa kahi ʻano like me ka paipu (proboscis) ma kahi o ka ihu .
- Aia kēia ʻōmole ma kahi ʻokoʻa, e like me luna o ka maka a ma ke kua paha o ke poʻo.
- He waha māwae ko ka waha.
- Loaʻa i ka lehelehe māwae .
- Ua liʻiliʻi loa ke poʻo.
He aha nā kumu pilikia no kēia maʻi?
ʻOiai he paʻakikī ke kuhikuhi pono i ke kumu o kēia ʻano, ua ʻike ʻia e ka noiʻi kekahi mau mea e hoʻonui ai i ka pilikia. E hoʻokaʻawale kākou iā lākou i ʻelua mau ʻano.
| ʻAno kumu pilikia | Wehewehena |
|---|---|
| Nā kumu hānau keiki |
|
| Nā kumu makuahine |
Hiki ke ʻike ʻia kēia i ka wā hāpai?
ʻAe, ʻoiaʻiʻo nō. Inā ʻike ʻoe i kahi kauka hānau keiki a me ke kauka wahine (VOG) i ka manawa kūpono a hele i nā keʻena lapaʻau e like me ka hoʻonohonoho ʻana, hiki ke ʻike ʻia kēia mau kūlana i ka wā hāpai.
Hiki ke ʻike maopopo ʻia kēia mau ʻano ʻē i ka lolo a me ke alo o ka pēpē i ka wā o ka ultrasound scan i ka wā hāpai. I kekahi manawa, inā ʻaʻole maopopo nā kiʻi scan, hiki i ke kauka ke kuhikuhi iā ʻoe i kahi fetal MRI scan no ka hōʻoia hou aku. ʻAʻole kēia mau hoʻokolohua e hōʻeha i ka makuahine a i ʻole ke pēpē.
ʻO ia ke kumu e paipai ai ka World Health Organization (WHO) e ʻimi i ke aʻo lapaʻau i ka hikiwawe loa ma hope o ka hāpai ʻana, ʻoiai hoʻi i ka trimester mua.
He aha ka hopena o kēia kūlana?
He mea paʻakikī iki kēia ʻāpana e kamaʻilio e pili ana, akā he mea nui e ʻike i ka ʻoiaʻiʻo. ʻO Cyclopia kahi kūlana i kūlike ʻole me ke ola . Ma muli o nā maʻi ʻino e kū mai ana i loko o ka lolo a me nā ʻōpū ʻē aʻe, ʻo ka hapa nui o nā hāpai ʻana me kēia kūlana e pau i ka hāʻule ʻana o ka pēpē a i ʻole ka hānau make ʻana.
ʻOiai he mea kākaʻikahi ka hānau ola ʻana o kahi pēpē, ʻaʻole paha e ola ia no nā hola a i ʻole nā lā he nui. Wahi a nā hōʻike, ʻaʻohe pēpē i hānau ʻia me kēia maʻi i ola ma mua o 6 mau mahina.
ʻAʻohe ala lapaʻau a pale paha i loaʻa no kēia maʻi.
Ka mana hoʻoilina a me ke aʻo ʻana
ʻO Holoprosencephaly, kahi maʻi e hoʻoulu ai i ka cyclopia, hiki ke hoʻoili ʻia mai kēlā hanauna a i kēia hanauna. ʻO ia hoʻi, he mana hoʻoilina paha kona. Inā ua loaʻa i kekahi o kou ʻohana kahi keiki me kēia maʻi, he mea nui loa ia e hoʻomaopopo i nā ʻohana pili ʻē aʻe e hoʻolālā ana e hoʻomaka i kahi ʻohana e pili ana i ia mea. Hiki i ka hoʻāʻo ʻana i ka hoʻoilina a me ke aʻo ʻana ke kōkua i ka hoʻoholo ʻana i ka pilikia o kahi keiki e loaʻa ana kēia maʻi i ka wā e hiki mai ana. He mea nui loa ia e ʻike i kahi kauka kūpono no kēia.
Nā ʻano ʻē aʻe o Holoprosencephaly
Hoʻokumu ʻia ʻo Cyclopia e ke ʻano alobar, ke ʻano koʻikoʻi loa o ka holoprosencephaly, akā aia kekahi mau ʻano i ʻoi aku ka koʻikoʻi.
- ʻO ka holoprosencephaly Semi-lobar: Ma kēia kūlana, ua hui pū ʻia nā hemispheres cerebral ma ke alo. Hiki i nā hiʻohiʻona o ka helehelena ke komo pū me ka ihu pālahalaha, kahi puka ihu hoʻokahi, a i ʻole ka lehelehe māwae/palate.
- Lobar holoprosencephaly: I kēia hihia, ʻoiai ua māhele nui ʻia ka lolo, aia kekahi ʻano like ʻole ma ka lobe frontal. Aia paha he mau hiʻohiʻona e like me ke kau kokoke ʻana o nā maka, ka ihu pālahalaha, a pēlā aku. ʻAʻohe paha he mau loli maka i ʻike ʻia.
- ʻOkoʻa waena waena o ka lolo: Maanei kahi e hoʻopilikia ʻia ai ka ʻaoʻao waena o ka lolo. Maanei pū kekahi, ʻaʻohe paha he loli iki a ʻaʻohe paha ma ka maka.
ʻO ke ola o nā keiki me kēia ʻano maʻi ʻoi aku ka liʻiliʻi ma muli o ka nui o ka hōʻino ʻana i ka lolo a me nā pilikia olakino ʻē aʻe e pili ana. Hiki i kekahi mau keiki ke loaʻa nā pilikia e like me ka hopu ʻana, ka hydrocephalus, a me nā pilikia aʻo, aʻo kekahi poʻe e ola maʻamau me nā kīnā liʻiliʻi.
Leka Lawe-Home
- He kīnā hānau laha ʻole ka Cyclopia i hoʻokumu ʻia e kahi pilikia koʻikoʻi me ka ulu ʻana o ka lolo i ka wā mua o ka hāpai ʻana.
- He kūlana kēia e hiki ʻole ai i kahi pēpē ke ola, a pinepine ka hopena i ka hāʻule ʻana o ka manawa a i ʻole ka hānau make ʻana. He pōkole loa ke ola o nā pēpē i hānau ola ʻia.
- Hiki ke ʻike mua ʻia kēlā mau kūlana ma ka loaʻa ʻana o ke aʻo lapaʻau kūpono a me nā scan i ka wā hāpai.
- Ma muli paha o ka hopena genetic o kēia maʻi, he mea nui loa e ʻike i kāu kauka no ke aʻo ʻana i nā genetics inā he moʻolelo ʻohana o kēia maʻi.
- ʻAʻole kēia he hewa iki na nā mākua. He hewa olaola paʻakikī loa ia e kū mai ana i ka wā o ka ulu ʻana o ka pēpē i loko o ka ʻōpū.
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