Anencephaly: E kamaʻilio kākou e pili ana

Ua ʻike mākou ʻo ka makemake nui loa o ʻoukou a pau, ma ke ʻano he makuahine, ʻo ia ka hānau ʻana i kahi pēpē olakino a piha ka manawa. Akā i kekahi manawa, hiki mai nā pilikia a mākou i manaʻo ʻole ai. He kumuhana koʻikoʻi loa ka lohe ʻana iā Anencephaly. He kīnā hānau kēia e kū mai ana i ka wā e ulu pono ʻole ai ka lolo a me ke poʻo o ka pēpē. ʻO ka ʻeha a me ka haʻalulu āu e ʻike ai i kou aʻo ʻana e pili ana i kahi mea e like me kēia, ʻaʻole hiki ke ʻōlelo ʻia. Akā, he mea nui loa iā ʻoe ke hoʻomaopopo pololei a maʻalahi i kēia kūlana. I kēia lā, e kamaʻilio mākou e pili ana i kēia kūlana i kapa ʻia ʻo Anencephaly.

I ka ʻōlelo maʻalahi, he aha ka Anencephaly?

He maʻi hānau ʻia ka Anencephaly i ka wā hānau. Ma kēia ʻano, ʻaʻole e ulu kekahi mau ʻāpana koʻikoʻi o ka lolo a me ke poʻo o ka pēpē. He ʻano koʻikoʻi kēia e hoʻopilikia ai i ka ʻōnaehana nerve o ka pēpē.

E noʻonoʻo, i ka malama mua o ka hāpai ʻana, hoʻomaka ka lolo o ka pēpē, ke poʻo, ka iwi kuamoʻo, a me ke kaula iwi kuamoʻo e hana ʻia. Hoʻokumu ʻia kēia mau mea i loko o kahi ʻano kūikawā i kapa ʻia ʻo 'neural tube'. Pono kēia paipu e pani, e like me ka zipper. I ke ʻano o ka anencephaly, ʻaʻole pani pono ka ʻaoʻao o luna o kēia neural tube, kahi e hana ʻia ai ka lolo a me ke poʻo. ʻO ia ke kumu i kapa ʻia ai hoʻi he neural tube defect .

ʻO ka lolo ke kāohi i nā mea āpau i ko kākou ola, mālama ia iā kākou i ke ola. No laila, he mea paʻakikī i ke keiki ke ola me ka ʻole o nā ʻāpana nui o ka lolo. No laila, ʻo nā pēpē i hānau ʻia me ka anencephaly hiki ke ola no kekahi mau minuke, hola a i ʻole lā. ʻO ka hapa nui o ka manawa, ʻo ia mau hāpai ʻana e pau i ka hāʻule ʻana o ka pēpē a i ʻole ka hānau make ʻana.

Aia kekahi mau ʻano nui o ka anencephaly?

ʻAe, ʻekolu ʻano nui o ka anencephaly. He hopena koʻikoʻi ko nā ʻano ʻekolu i ke ola o kahi keiki.

He aha nā hōʻailona e hiki ai ke ʻike i kēia maʻi?

Hiki ke ʻike mua ʻia kēia maʻi ma o nā hoʻokolohua i ka wā hāpai. Ke nānā nei nā kauka i kēia.

• Nā hoʻāʻo koko: Kiʻekiʻe loa ke kiʻekiʻe o ka protein i kapa ʻia ʻo alpha-fetoprotein (AFP) i ke koko o ka makuahine. He hoʻāʻo kēia e hana pinepine ʻia i ka trimester ʻelua o ka hāpai ʻana.
• Nānā: Hiki ke kiʻekiʻe loa ka nui o ka wai amniotic a puni ka pēpē. Ua kapa ʻia kēia he polyhydramnios . Eia kekahi, hiki i kahi scan ultrasound ke hōʻike maopopo ua nalowale nā ​​​​ʻāpana o ke poʻo a me ka lolo o ka pēpē.
• Ke ʻano o ka pēpē: I ka wā hānau, e ʻike paha ʻoe ua nalowale nā ​​​​ʻāpana o ke poʻo o ka pēpē, ua hōʻike ʻia nā ʻiʻo lolo, a ua liʻiliʻi ke poʻo ma mua o ka mea i manaʻo ʻia.

He aha ka manaʻo o kahi pēpē hānau hou?

He mea ʻeha loa kēia no ka makuahine a i ʻole ka makuakāne. No nā pēpē i hānau ʻia me kēia maʻi:

• ʻAʻohe ʻike.
• ʻAʻohe hihiʻo.
• ʻAʻohe hoʻolohe.
• ʻAʻole au i ʻike i ka ʻeha.

I kekahi manawa, hiki i nā pēpē nona ka lolo i ulu iki ke hōʻike i kekahi mau reflexes ke hoʻopā ʻia. Nā mea e like me ka hanu ʻana, ka neʻe ʻana o ko lākou mau lālā. Ke ʻike nei i kēia mau mea, loaʻa paha iā ʻoe ka manaʻo e ʻike ana ka pēpē iā mākou. Akā, ʻaʻole ia he mea i hana ʻia me ka ʻike. He mea ia e hana koke ʻia. No ka mea, ʻaʻole ma laila nā ʻāpana nui o ka lolo, ʻaʻole manaʻo a maopopo paha ka pēpē i kekahi mea.

He aha nā kumu a me nā pilikia no ka anencephaly?

ʻAʻole hiki ke ʻōlelo pololei i ke kumu o ka anencephaly, akā ua ʻike ʻia kekahi mau kumu pilikia e hiki ke kōkua i ia.

Pehea e hoʻoholo pololei ʻia ai kēia kūlana i ka wā hāpai?

Ke hele ʻoe i ke keʻena lapaʻau i kou wā hāpai, e hana nā kauka i kekahi mau hoʻokolohua e ʻike ai i nā kīnā hānau. He kōkua nui kēia mau hoʻokolohua i ka ʻike ʻana i ka anencephaly.

• Pale Māka ʻEhā: He hoʻāʻo kēia i hana ʻia ma ke koko o ka makuahine. Nānā ia i nā mea e like me nā pae AFP e loaʻa ai kahi manaʻo o nā kīnā ʻōpū neural a me nā kūlana hoʻoilina ʻē aʻe.
• ʻO ke scan ultrasound: ʻO kēia ke ʻano hana i hoʻohana pinepine ʻia. ʻO kahi scan anomaly, i hana ʻia ma waena o 18-20 mau pule, e nānā i ke poʻo o ka pēpē, ka lolo, a me ke kaula iwi kuamoʻo. Inā loaʻa ka anencephaly, hiki ke ʻike maopopo ʻia me kēia scan. I kekahi manawa hiki ke ʻike ʻia ma mua, ma kahi o 8-12 mau pule.
• ʻO ka MRI Fetal (Magnetic Resonance Imaging): Inā hōʻike ka scan i kekahi mau pilikia, hiki i kāu kauka ke ʻōlelo aku i kahi MRI e noiʻi hohonu i ka lolo a me ke kaula spinal.
• Amniocentesis: Ma kēia hoʻāʻo, lawe ʻia kahi hāpana liʻiliʻi loa o ka wai amniotic e hoʻopuni ana i ka pēpē a hoʻāʻo ʻia. Inā kiʻekiʻe ka pae o AFP i loko o kēlā wai, he hōʻailona paha ia o kahi kīnā neural tube.

Aia kekahi lāʻau lapaʻau no kēia?

ʻO kēia ka ʻoiaʻiʻo paʻakikī o kēia kumuhana. ʻAʻohe lāʻau lapaʻau a lāʻau lapaʻau paha no ka anencephaly. He kūlana ia e kūlike ʻole me ke ola.

Ke loaʻa iā ʻoe kahi hōʻailona e like me kēia, e hāʻawi nā kauka a me nā limahana o ka haukapila iā ʻoe a me kou ʻohana i ke kākoʻo naʻau āu e pono ai. E wehewehe lākou i ke kūlana iā ʻoe, e kamaʻilio e pili ana i kāu mau koho, a e kōkua iā ʻoe i kēia manawa paʻakikī.

Hiki ke hana ʻia kekahi mea e pale aku ai i kēia ʻano kūlana?

ʻOiai ʻaʻole hiki ke pale loa ʻia, aia kekahi mau mea hiki iā ʻoe ke hana e hōʻemi i kou pilikia. He mea nui loa kēia inā ʻoe e hoʻolālā ana e hāpai hou.

• E lawe i ka waikawa folic: ʻO kēia ka mea nui loa. E hoʻomaka i ka lawe ʻana i 400 mcg (micrograms) o ka waikawa folic i kēlā me kēia lā ma ka liʻiliʻi he 3 mau mahina ma mua o kou hāpai ʻana. ʻOiai ʻo nā hemahema o ka ʻōpū neural e kū mai ana i nā pule mua o ka hāpai ʻana, he mea nui e lawe i ka waikawa folic mai ka manawa āu e hoʻāʻo nei e hāpai. Inā ua loaʻa iā ʻoe kahi pēpē me kahi kīnā o ka ʻōpū neural ma mua, hiki i kāu kauka ke ʻōlelo i kahi mahele kiʻekiʻe o ka waikawa folic.
• E ʻimi i ke aʻo lapaʻau (Preconception Counseling):Inā ʻoe e hoʻolālā ana e hāpai, e ʻike i ke kauka ma mua o kou hāpai ʻana. E kamaʻilio e pili ana i nā lāʻau lapaʻau āu e lawe nei, nā maʻi ʻē aʻe āu e loaʻa nei (e like me ka maʻi diabetes), a e kiʻi i ke alakaʻi āu e pono ai e loaʻa kahi hāpai olakino.
• Nohona olakino: E ʻai i ka meaʻai kaulike, e pale i ka waiʻona a me ka puhipaka. ʻO ka mālama pono ʻana i kou olakino e pili pono ana i ke olakino o kāu pēpē.

Hiki ke kaumaha a me ka haʻalulu o ka nalowale ʻana o kahi keiki e like me kēia. He mea nui ka loaʻa ʻana o kekahi e kamaʻilio pū ai a kaʻana like i kou mau manaʻo. E kamaʻilio me kāu kāne, ʻohana, a me nā hoaaloha. Inā makemake ʻoe i ke kōkua, mai kānalua e ʻimi i ke kōkua o kahi loea olakino noʻonoʻo. ʻO ka hui pū ʻana me nā hui kākoʻo me nā mākua ʻē aʻe i ʻike i nā ʻike like hiki ke lilo i kumu ikaika nui.