Ua nalowale anei nā ʻāpana o ka lolo o kāu pēpē? E kamaʻilio kākou e pili ana i ka hydranencephaly?

ʻAuē, i kekahi manawa he mea kaumaha ke noʻonoʻo e pili ana i nā maʻi e loaʻa ai i kā mākou mau pēpē, ʻeā? ʻOi loa aku, ʻo kekahi mau kūlana a mākou e aʻo ai i ka wā e noho ana ke pēpē i loko o ka ʻōpū he paʻakikī loa ia a paʻakikī hoʻi e hoʻomaopopo. I kēia lā e kamaʻilio mākou e pili ana i kahi maʻi lolo koʻikoʻi he mea kakaikahi loa, akā he mea nui e ʻike. Ua kapa ʻia kēia he hydranencephaly.

He aha maoli ka Hydranencephaly?

I ka ʻōlelo maʻalahi, he maʻi neurological kakaʻikahi ka hydranencephaly e kū mai ana i ka wā hānau. Ma kēia kūlana, ʻelua mau ʻāpana koʻikoʻi loa o ka lolo o ka pēpē, i kapa ʻia ʻo nā hemispheres cerebral , ʻaʻole i hana ʻia. E noʻonoʻo e pili ana iā ia, ʻo ka ʻāpana nui loa o ko kākou lolo ʻo ia ka cerebrum. ʻO ia kahi e loaʻa ai kēia mau hemispheres ʻelua. ʻO ka noʻonoʻo ʻana, ka hoʻomanaʻo ʻana, a me ka manaʻo a pau e kāohi ʻia e kēia mau hemispheres cerebral.

No laila, ma ke poʻo o kahi pēpē me ka hydranencephaly, kahi e pono ai nā hemispheres cerebral, aia nā ʻeke i piha i ka wai cerebrospinal (CSF) . ʻO kēia wai cerebrospinal (CSF) ʻo ia ka wai e hoʻopuni ana a pale i ko mākou lolo a me ke kaula spinal. Akā i kēia hihia, hana ʻia kekahi mea ʻokoʻa.

I ka hala ʻana o ka manawa, hoʻomaka ke poʻo o kēia mau pēpē e ulu nui. Eia kekahi, hiki ke ʻike ʻia nā hōʻailona koʻikoʻi ʻē aʻe. ʻO ka mea kaumaha, ʻo kēia ʻano maʻi pinepine ka hopena i ka make ʻana o ka pēpē ma hope koke o ka hānau ʻana, ʻoiai inā ʻaʻole ia i loko o ka ʻōpū o ka makuahine.

He aha ka ʻokoʻa ma waena o ka Hydranencephaly a me ka Hydrocephalus?

Ua lohe paha ʻoe i kahi maʻi i kapa ʻia ʻo hydrocephalus. Pili kēia mau maʻi ʻelua i kahi poʻo i hoʻonui ʻia a me ka hōʻiliʻili ʻana o ka wai cerebrospinal (CSF). Akā, ʻokoʻa loa kēia mau maʻi ʻelua.

ʻO ka Hydrocephalus kahi maʻi e hōʻiliʻili ai ka wai i loko o ka lolo, i kapa ʻia ʻo ka wai cerebrospinal (CSF), e hoʻonui ai i ke kaomi i loko o ke poʻo. Hiki i kēia ke hōʻino i ka lolo. Hiki ke loaʻa i ka wā hānau, a i ʻole hiki ke ulu ma hope o kahi ulia a maʻi paha. I kekahi manawa, hiki ke loaʻa ka hydrocephalus ma ke ʻano he hōʻailona o kahi maʻi i kapa ʻia ʻo hydranencephaly.

Akā i loko o ka hydranencephaly, ʻaʻole e ulu pono ka lolo ʻoiai ke pēpē i loko o ka ʻōpū. ʻO ia hoʻi, ʻoi aku ka liʻiliʻi o nā ʻāpana o ka lolo e ulu ana.

He mea nui e hoʻokaʻawale ma waena o kēia mau kūlana ʻelua, ʻoiai he ʻokoʻa loa nā lāʻau lapaʻau a me ka prognosis. Hiki i nā pēpē he nui me ka hydrocephalus ke ho'ōla inā ʻike pono ʻia a mālama ʻia. Eia nō naʻe, ʻaʻole maʻamau nā pēpē me ka hydranencephaly.

No laila he aha ka ʻokoʻa ma waena o kēia a me ka holoprosencephaly?

He ʻano ʻē aʻe kēia e pili ana i ka ulu ʻana o ka lolo.I ka holoprosencephaly, ʻaʻole e māhelehele ka ʻaoʻao mua o ka lolo o ka pēpē (forebrain), ʻo ia hoʻi nā hemispheres cerebral i ʻōlelo ʻia ma mua. ʻO ia hoʻi, ma kahi o ʻelua ʻāpana, e noho mau ana ia ma ke ʻano he hoʻokahi. Eia naʻe, i ka hydranencephaly, ʻaʻohe loa kēlā mau hemispheres.

Ma muli o ke koʻikoʻi o ke kūlana, hiki i kekahi mau pēpē me ka holoprosencephaly ke ola ma hope o ka hānau ʻana.

Pehea ka maʻamau o kēia maʻi, ʻo Hydranencephaly?

He maʻi laha ʻole kēia. Manaʻo nā kānaka ʻepekema e pili ana kēia maʻi i hoʻokahi i loko o 10,000 hāpai keiki, a i ʻole hoʻokahi i loko o 5,000. He haʻahaʻa loa ia.

No ke aha e loaʻa ai ka hydranencephaly? He aha nā kumu?

ʻO ka ʻoiaʻiʻo, ʻaʻole maopopo loa i nā kānaka ʻepekema ke kumu o ka hydranencephaly. He hiki paha he hoʻoilina ia, akā ʻaʻohe maopopo maopopo pehea e hana ai.

Eia nō naʻe, i kekahi mau hihia, ua ʻike ʻia ua pili kēia ʻano i ka ʻike ʻana o ka makuahine i nā mea ʻawahia i ka wā hāpai . No laila, pono e akahele loa i ka wā hāpai.

He aha nā hōʻailona o kēia maʻi?

Ke hānau ʻia kahi pēpē me ka hydranencephaly, e like paha ia me kahi pēpē maʻamau no nā lā mua. No laila, he mea paʻakikī paha ke ʻike koke iā ia. Hoʻomaka nā hōʻailona e ʻike ʻia i loko o nā pule a i ʻole nā ​​mahina mua o ke ola. Eia kekahi o nā hōʻailona e ʻike ʻia:

• ʻO ka hiki ʻole ke ulu pono, ʻo ia hoʻi, ʻaʻole e piʻi ke kaumaha o ka pēpē a i ʻole e ulu pono ana .
• Hiki ke hoʻonui a emi paha ka ʻoʻoleʻa o nā mākala, a me ka ʻūlū ʻana o nā mākala .
• ʻOi aku ka nui o ke poʻo ma mua o ka maʻamau.
• Ka paʻakikī o ka ʻike ʻana a me ka lohe ʻana .
• ʻOʻoleʻa i nā lālā.
• Paʻakikī ka hanu ʻana .

Inā loaʻa iā ʻoe kekahi a ʻoi aku paha o kēia mau hōʻailona, ​​​​he mea nui loa e ʻimi koke i ke kōkua lapaʻau.

Pehea e ʻike ʻia ai ka Hydranencephaly?

Hiki ke ʻike ʻia kēia ʻano ma mua o ka hānau ʻana o ka pēpē, ʻo ia hoʻi, i ka wā o kahi scan ultrasound . E like me kou ʻike, hana kahi scan ultrasound i kahi kiʻi o ka pēpē i loko o ka ʻōpū o ka makuahine. A laila, hiki ke ʻike ʻia ua nalowale nā ​​​​hemispherics cerebral o ka pēpē.

Inā hōʻike ka ultrasound prenatal i ka hydranencephaly, hiki i ke kauka ke kauoha i kahi MRI e kiʻi i nā kiʻi maopopo.

Eia nō naʻe, i kekahi manawa ʻaʻole ʻike ʻia i ka wā hāpai a hiki ke hoʻomau ke ʻano ma hope o ka hānau ʻana o ka pēpē. I kēlā hihia, hiki ke hala i nā hebedoma a i ʻole nā ​​​​mahina e ʻike ai i ke ʻano. No ka mea, e like me ka mea i ʻōlelo ʻia ma mua, hiki i ka pēpē ke ʻano maʻamau i ka wā mua.

Hiki i ke kauka ke hōʻoia i ke kūlana ma muli o nā hōʻailona o ka pēpē a me ka MRI o ka lolo. Hiki i kahi MRI ke kōkua i ka hoʻokaʻawale ʻana i ka hydranencephaly mai nā kūlana ʻē aʻe, e like me ka hydrocephalus a me ka holoprosencephaly, i kūkākūkā ʻia ma mua.

Eia kekahi, hiki ke hana ʻia nā hoʻokolohua ʻē aʻe, e like me:

• Angiography: Pili kēia i ka lawe ʻana i nā kiʻi X-ray o nā kīʻaha koko me ka hoʻohana ʻana i kahi mea hoʻoluʻu kūikawā.
• CT scan: ʻO kēia kekahi ala e kiʻi ai i nā kiʻi o ka lolo.
• ʻO ka ultrasound Hydranencephaly: He hoʻāʻo ultrasound i hana ʻia e nānā i kēia kūlana.
• Transillumination: ʻO kēia ka hoʻomālamalama ʻana i kahi kukui ma o ka ʻiʻo o ka lolo mai lalo o ke poʻo e ʻike ai inā he mau mea ʻē.
• Ka hoʻāʻo ʻana i ka genetics: E ʻike inā he hoʻoilina.

He aha nā lāʻau lapaʻau no nā pēpē me ka hydranencephaly?

He mea koʻikoʻi loa kēia. Inā hōʻoia ʻia ka hydranencephaly i ka wā o ka hoʻāʻo prenatal, hoʻoholo kekahi mau ʻohana e hana i kahi therapeutic abortion , ʻo ia hoʻi ka hoʻopau ʻana i ka hāpai ʻana no nā kumu lapaʻau. He hoʻoholo paʻakikī loa kēia, akā hāʻawi nā kauka a me nā kākāʻōlelo i ke kākoʻo e pono ai i ia mau manawa.

Inā hānau ʻia kahi pēpē me ka hydranencephaly, ʻaʻohe lāʻau lapaʻau. ʻO ke kumu nui o ka lāʻau lapaʻau ʻana ka hōʻemi ʻana i nā hōʻailona a me ka hoʻoluʻolu ʻana i ka pēpē e like me ka hiki.

• Hana ʻia ke ʻoki kino e wehe i ke kahe keu mai ka lolo a hoʻokomo i kahi shunt (kahi ʻōmole liʻiliʻi) e hōʻemi i ke kaomi i loko o ka lolo. ʻOiai he lāʻau lapaʻau kūpono kēia no ka hydrocephalus, he palena wale nō kona hoʻohana ʻana no ka hydranencephaly.
• Hiki ke hoʻohana ʻia kekahi lāʻau i kapa ʻia ʻo Endoscopic Choroid Plexus Coagulation (ECPC) i kekahi manawa ma ke ʻano he lāʻau no ka hoʻonui koke ʻana i ka lolo.

Eia kekahi, hiki i ke kauka ke ʻōlelo i nā mea e like me:

• Nā lāʻau lapaʻau antiseizure .
• Kākoʻo meaʻai.
• Hoʻoikaika kino e hōʻemi i nā hōʻailona ʻiʻo.
• Inā he hemahema hanu, pono paha ka tracheostomy (kahi ʻoki liʻiliʻi ma ka puʻu) a i ʻole ka ea mechanical.

Hiki ke pale ʻia kēia maʻi o ka hydranencephaly?

ʻAʻole maopopo loa i nā kānaka ʻepekema ke kumu o kēia hanana, no laila ʻaʻole hiki iā lākou ke ʻōlelo maopopo pehea e pale aku ai. Eia nō naʻe, e like me ka mea i ʻōlelo ʻia ma mua, ua pili kekahi mau hihia i ka ʻike ʻana i nā mea ʻawahia i ka wā hāpai. No ka laʻana, nā lāʻau lapaʻau e like me ka cocaine, ka puhipaka, a me kekahi mau lāʻau hoʻopaʻa e like me ka sodium valproate.

No laila, he mea nui loa i nā makuahine hāpai ke pale aku i ka pili ʻana i nā mea ʻawahia. He mea nui nō hoʻi e kamaʻilio me kā lākou kauka e pili ana i nā lāʻau lapaʻau a lākou e lawe nei.

He aha ke kūlana o ke ola o kahi pēpē me ka hydranencephaly?

He mea kaumaha kēia ke lohe ʻia. ʻAʻole maikaʻi loa ka nānā ʻana no nā keiki me ka hydranencephaly. Nui nā pēpē e make ma mua o ka hānau ʻana a i ʻole ma mua o hoʻokahi makahiki. He mea kākaʻikahi loa, me ka mālama kākoʻo koʻikoʻi, hiki i kahi keiki me ka hydranencephaly ke ola no kekahi mau makahiki.

Pehea ʻoe e hana ai me ke kūlana e like me kēia?

He mea paʻakikī loa ka ʻike ʻana ua loaʻa i kāu keiki kahi maʻi e like me ka hydranencephaly. He mea maopopo ia.

• He mea nui loa ka hāʻawi ʻana i nā ʻohana i ka hoʻonaʻauao e pono ai e hoʻomaopopo i ke koʻikoʻi o kēia maʻi.
• Eia kekahi, ʻo ka ʻimi ʻana i ka ʻōlelo aʻoaʻo a me ke komo ʻana i nā hui kākoʻo kahi e hiki ai iā ʻoe ke hoʻopili me nā ʻohana ʻē aʻe e kū nei i nā kūlana like, hiki ke lilo i kumu ikaika nui.

He kīnā hānau laha ʻole ka Hydranencephaly e hoʻopilikia ai i ka ulu ʻana o ka lolo. Hoʻomaopopo pinepine ʻia ma mua a ma hope koke iho paha o ka hānau ʻana. Inā loaʻa kēia maʻi i kāu pēpē, e hāʻawi kāu hui lapaʻau iā ʻoe a me kou ʻohana me ke kākoʻo āpau, ka hoʻonaʻauao, a me ke aʻo ʻana āu e pono ai. E hoʻomanaʻo, ʻaʻole ʻoe hoʻokahi.

Leka Hoʻihoʻi Hope Loa

E Māmā a me Pāpā, he maʻi kaumaha a paʻakikī maoli ka Hydranencephaly. Eia nō naʻe, he mea nui e makaʻala i ia mea.

• He kūlana kakaikahi loa kēia e kū mai ana ke ulu pono ʻole nā ​​ʻāpana o ka lolo.
• Hiki ke ʻike pinepine ʻia kēia ma o nā scan prenatal .
• ʻOiai ʻaʻohe lāʻau lapaʻau no kēia, aia nā lāʻau lapaʻau e kaohi i nā hōʻailona a hoʻoluʻolu i ka pēpē .
• No ka mea ʻaʻole ʻike ʻia ke kumu kikoʻī, he mea nui e hana i nā hana palekana, e like me ka pale ʻana i nā mea ʻawahia i ka wā hāpai.
• Hiki i nā ʻohana e kū nei i kēia kūlana ke loaʻa ka ikaika nui mai nā kauka, nā kākāʻōlelo, a me nā hui kākoʻo .

Inā he mau nīnau hou aku kāu e pili ana i kēia, e ʻoluʻolu e kamaʻilio me kāu kauka. E hāʻawi lākou iā ʻoe i ka ʻike a me ke alakaʻi āpau āu e pono ai.

ʻO Hydranencephaly, nā ʻano maʻi o ka lolo, nā kīnā hānau, ke olakino o ka pēpē, ka wai cerebrospinal, hydrocephalus, ka ʻike maʻi prenatal