He liʻiliʻi anei nā maka o kāu pēpē? A i ʻole ʻaʻole i hoʻokumu ʻia? (Microphthalmia a me Anophthalmia) E kamaʻilio kākou e pili ana.

Ua ʻike paha ʻoe ua hānau ʻia kekahi mau pēpē me kekahi ʻano ʻano maka ʻē. I kekahi manawa, ʻoi aku ka liʻiliʻi o kekahi a ʻelua paha mau maka ma mua o ka maʻamau, a i ʻole i nā hihia kakaikahi, ʻaʻole paha i hoʻonohonoho pono ʻia nā maka. He mea maʻamau no ka makua ke hopohopo nui i ka wā e ʻike ai lākou i kēia mau kūlana. No laila, i kēia lā e kamaʻilio mākou e pili ana i kēia mau kūlana i kapa ʻia ʻo `(Microphthalmia)` a me `(Anophthalmia)`.

He aha nā (Microphthalmia) a me nā (Anophthalmia)?

I ka ʻōlelo maʻalahi, he mau maʻi hānau kēia mau maʻi ʻelua (aia i ka wā hānau). ʻO ke ʻano kēia, ua loaʻa lākou ma muli o kahi pilikia me ka ulu ʻana o nā maka i ka wā e noho ana ke pēpē i loko o ka ʻōpū. Ua kapa pū kekahi poʻe i kēia mau "nā kīnā hānau o nā maka."

Microphthalmia: ʻO kēia ka wā e ulu pono ʻole ai kekahi a i ʻole nā ​​maka ʻelua o ka pēpē, e hoʻolilo ana iā lākou i liʻiliʻi ma mua o ka maʻamau. Hiki ke hewa ke ʻano o nā ʻāpana i loko o ka maka ma muli o ka ulu kūpono ʻole.

• Inā pili ia i nā ʻaoʻao ʻelua ('Bilateral microphthalmia`): ʻO ia hoʻi, pili kēia ʻano i nā maka ʻelua.
• Inā hoʻokahi wale nō ʻaoʻao e pili ana ('Unilateral microphthalmia`): ʻO ke ʻano kēia, hoʻokahi wale nō maka e pili ai kēia maʻi.

Ua kapa pū kekahi poʻe i kēia "small eye syndrome".

`(Anophthalmia)`: ʻO kēia ka wā e hiki ʻole ai i kekahi a i ʻole nā ​​maka ʻelua o ka pēpē ke ulu . ʻO ke ʻano kēia, ʻaʻole i hoʻokumu ʻia nā maka.

• Inā pili ia i nā ʻaoʻao ʻelua ('Bilateral anophthalmia`): ʻAʻole nā ​​maka ʻelua ma kahi.
• Inā hoʻokahi wale nō ʻaoʻao e pili ana ('Unilateral anophthalmia`): ʻAʻole hoʻokahi maka ma kahi.

Pehea ka maʻamau o kēia mau kūlana?

He mau maʻi laha ʻole kēia. Wahi a kekahi mau hōʻike, ʻoiai ma kahi ʻāina e like me ʻAmelika, ʻike ʻia kēia mau maʻi (Anophthalmia a me Microphthalmia) ma kahi o hoʻokahi i loko o 5,200 mau pēpē i hānau ʻia i kēlā me kēia makahiki. Wahi a kekahi mau hōʻike, hoʻokahi ia i loko o 10,000. ʻO ia hoʻi, ʻaʻole i loaʻa i kēlā me kēia pēpē kēia.

He aha nā hōʻailona o kēia mau kūlana?

Ke nānā pono ke kauka i ka pēpē ma hope o ka hānau ʻana, ʻoiai hoʻi i ka nānā ʻana i nā maka, hiki iā lākou ke ʻike inā loaʻa kēia maʻi a ʻaʻole paha.

ʻO ka mea nui, ʻo ka emi ʻana o ka ʻike maka a i ʻole ka nalowale loa o ka ʻike maka . Me kēia mau maʻi maka, hiki ke loaʻa pū nā maʻi maka hou aʻe a me nā pilikia olakino ʻē aʻe.

ʻO kekahi mau pilikia maka ʻē aʻe e hiki ke komo pū me:

• Nā Cataracts: Ma kēia, hana ʻia kahi mea like me ke ao ma ka lens i loko o ka maka, e hoʻoulu ai i ka ʻike maka pōwehiwehi a me ka nalowale o ka ʻike kala.
• Coloboma: He nalowale kēia o nā ʻiʻo i loko o ka maka. ʻO ka hapa pinepine, hana ʻia kēia ma ka iris, ka ʻāpana kala o ka maka. Hiki i ke kanaka me ka coloboma ke loaʻa kahi haumāna ʻano ʻē no ka mea aia kahi ʻoki ma ka iris.
• Microcornea: He ʻano kēia kahi i liʻiliʻi loa ai ka cornea, ka ʻāpana moakaka o ke alo o ka maka. Inā loaʻa iā ʻoe kēia, ʻaʻole e hiki aku kou cornea i 10 millimeters ke anawaena, ʻoiai inā he kanaka makua ʻoe.
• Retina hemo: He kūlana koʻikoʻi kēia e hiki ai ke alakaʻi i ka makapō. ʻO ka retina, ka papa o nā ʻiʻo ma ke kua o ka maka e kōkua iā mākou e ʻike, hoʻokaʻawale ʻia mai ke ʻiʻo kākoʻo. ʻO ka retina ka mea e hoʻouna i nā hōʻailona i ka lolo e pili ana i nā mea a mākou e ʻike ai.
• ʻO ka lihilihi maka e hāʻule ana (`Ptosis` a i ʻole `Pseudoptosis`): ʻO ka `(Ptosis)` ka wā e hāʻule ai ka lihilihi maka i lalo. Pili ia i nā ʻiʻo a me nā aʻalolo. Hiki i ka `(Pseudoptosis)` ke like me `(Ptosis)`, no ka mea, e hāʻule pū ana ka lihilihi maka. Eia naʻe, ʻaʻole ia i hana ʻia e nā aʻalolo a i ʻole nā ​​ʻiʻo, akā, no ka ulu pono ʻole ʻana o ka maka.

He aha nā kumu o `(Microphthalmia)` a me `(Anophthalmia)`?

ʻAʻole maopopo i nā kānaka noiʻi ke kumu o kēia mau maʻi. Hānau ʻia kekahi mau pēpē me kēia mau maʻi ma muli o nā loli genetic. Manaʻo nā kānaka noiʻi e hiki i nā loli i nā genes a me nā chromosomes, me nā kumu kaiapuni, ke kumu o kēia mau maʻi, i loaʻa i ka wā hānau.

Aia kekahi mau kumu ʻē aʻe e hiki ke hoʻopilikia i kēia mau kūlana maka:

• Ka hoʻohana ʻana i kekahi mau lāʻau lapaʻau i ka wā hāpai: No ka laʻana, ʻo Isotretinoin (ʻike ʻia hoʻi ʻo Accutane®) no ka ʻākena, a i ʻole Thalidomide no ke kanesa a me kekahi mau maʻi ʻili.
• Ka ʻike ʻia ʻana i nā kukuna X a i ʻole nā ​​​​​​mea hoʻoheheʻe ʻē aʻe i ka wā hāpai.
• Ka ʻike ʻia ʻana i nā kemika i ka wā hāpai: No ka laʻana, kekahi mau lāʻau lapaʻau a me nā pesticides.
• Ka ʻike ʻia ʻana i kekahi mau maʻi i ka wā hāpai: No ka laʻana, nā maʻi e like me ka German measles (`Rubella`) a me `(Toxoplasmosis)`.
• Ka nele o ka wikamina A o ka makuahine.

ʻO ka mea nui, ʻoiai aia kēia mau kumu, ʻaʻole e ʻike nā kānaka a pau i kēia mau kūlana. Eia kekahi, hiki ke hana ʻia kēia mau kūlana me ka ʻole o kekahi o kēia mau kumu.

Pehea e ʻike ai nā kauka i kēia mau kūlana?

I ke ʻano o kahi pēpē hānau hou, hiki i ke kauka ke ʻike i kēia mau kūlana ma ka nānā ʻana i ka pēpē. Eia nō naʻe, aia kekahi mau ala e ʻike ai i kēia mau kūlana i ka wā hāpai .

ʻO nā hoʻokolohua e hiki ke ʻike i kēia mau kūlana ma mua o ka hānau ʻana o ke pēpē:

• Ultrasound: Hoʻohana kēia i nā nalu kani alapine kiʻekiʻe e hana i nā kiʻi. Eia nō naʻe, ʻaʻole paha e ʻike mau ʻia ke kūlana e kahi ultrasound i hana ʻia i ka wā e noho ana ke pēpē i loko o ka ʻōpū.
• MRI o ka ʻōpū:ʻO ke ʻano o ka ʻōlelo ʻo `(MRI)` no `Magnetic Resonance Imaging`. He hoʻāʻo kiʻi kūikawā kēia. Hiki ke lilo i mea pono i ka ʻike ʻana i nā pilikia a me nā pilikia e kū mai ana i ka wā hānau o kahi pēpē.
• Ka hoʻāʻo ʻana i ka genetics: No ka laʻana, nā hoʻokolohua e like me ka hoʻāʻo nānā māka Quad. ʻO ka Quad screen kahi hoʻāʻo koko i hana ʻia ma waena o 15 a me 20 mau pule o ka hāpai ʻana. Hiki i kēia ke hāʻawi i kekahi ʻike e pili ana i nā kūlana genetic o ka pēpē.

He aha nā lāʻau lapaʻau no ka `(Microphthalmia)` a me ka `(Anophthalmia)`?

ʻO ka mea pōʻino, ʻaʻohe ala a ka ʻepekema lapaʻau e hāʻawi ai i nā pēpē i hānau ʻia me kēia mau maʻi i kahi maka hou. Eia nō naʻe, aia nā lāʻau lapaʻau e hiki ke kōkua iā lākou e ola me kēia mau maʻi.

• Nā Conformers: He mau mea hana kēia i kau ʻia i loko o ka lua maka. Kōkua lākou i ka lua maka a me nā ʻāpana maka e ulu maʻamau. I ka ulu ʻana o ke alo o ke pēpē, pono kēia mau mea hana e ʻoi aku ka nui.
• Nā maka prosthetic: He mau maka hana ʻia kēia i waiho ʻia i loko o nā lua maka hakahaka. Kōkua pū kēia i ka lua maka a me ka ulu ʻana o ka maka. Kōkua pū lākou i nā pilikia helehelena.
• ʻO ke ʻoki kino: Pono paha ke ʻoki kino e mālama i nā kūlana e like me ka cataracts, coloboma, a i ʻole e kūpono i nā conformers.
• Nā lawelawe e kōkua ana i ke keiki a me ka ʻohana e hoʻoponopono i ka nalowale o ka ʻike a i ʻole ka makapō: ʻO kēia mau mea nā kumu e aʻo ana i nā keiki me nā hemahema o ka ʻike, nā mea lapaʻau ʻike haʻahaʻa, a me nā loea ʻike haʻahaʻa. Kōkua kēia mau lawelawe hana mua i ke keiki e aʻo e hele, kamaʻilio, a launa pū me nā poʻe ʻē aʻe. Kōkua pū lākou i ka ʻohana e hana pū e hoʻomaikaʻi i ke ola o ke keiki.
• Nā Aniani a i ʻole nā ​​Pili Maka: I kekahi manawa, loaʻa paha i ka maka me Microphthalmia kekahi ʻike. I ia mau hihia, pono paha nā aniani hoʻoponopono e mālama i nā kūlana e like me Amblyopia (i ʻike ʻia hoʻi he maka palaualelo). Inā hoʻokahi wale nō maka kou ʻike, he mea nui e komo i nā aniani pale . Ma muli o nā ʻāpana o ka maka i hoʻopilikia ʻia e Microphthalmia, hiki paha iā ʻoe ke ʻike maopopo me nā aniani hoʻoponopono.

Pehea e hiki ai iaʻu ke hōʻemi i kēia pilikia?

ʻAʻohe ala e hoʻopau loa ai i ka pilikia o ka microphthalmia a me ka anophthalmia. Eia nō naʻe, aia kekahi mau mea hiki iā ʻoe ke hana e palekana ai kou hāpai ʻana :

• E ʻike i ke kauka ma mua o kou hāpai ʻana: E hana pū e noho olakino e like me ka hiki ma mua o kou hāpai ʻana a i kou wā hāpai. I loko o kēia kamaʻilio ʻana, hiki iā ʻoe ke kūkākūkā i nā lāʻau pale e pono ai ʻoe e hoʻopau ma mua o kou hāpai ʻana.
• E hoʻomaka a hoʻomau i ka mālama prenatal i ka wā mua a me ke kūpono: Mai poina i nā manawa o kāu kauka, ʻoiai inā maikaʻi ʻoe.
• E kamaʻilio me kāu kauka e pili ana i nā lāʻau lapaʻau a me nā huahana ʻē aʻe āu e lawe nei: E hōʻoia i ka palekana no ka hāpai kino olakino. Hoʻokomo pū kēia i nā lāʻau lapaʻau a kāu kauka i kuhikuhi ai, a me nā huaora a i ʻole nā ​​​​mea hoʻohui āu e lawe nei. Inā ʻoe e lawe ana iā Isotretinoin a i ʻole Thalidomide, e hōʻoia e haʻi i kāu kauka .
• Ma hope o ke kūkākūkā ʻana i kou mōʻaukala olakino a me ka mōʻaukala olakino ʻohana, hiki i kāu kauka ke kuhikuhi i ka hoʻāʻo genetic ma mua o kou hāpai ʻana.
• E noho mamao aku mai nā kemika ʻino.

Inā loaʻa iaʻu ʻo `(Microphthalmia)` a i ʻole `(Anophthalmia)`, he aha kaʻu e manaʻo ai?

ʻAʻohe lāʻau lapaʻau piha no nā maʻi `(Microphthalmia)` a me `(Anophthalmia). ʻO ka mea nui, pehea e mālama ai a ola me kēia mau maʻi a me nā pilikia ʻē aʻe e kū mai paha me lākou.

Āhea wau e ʻike ai i kaʻu kauka?

Inā loaʻa iā ʻoe a i ʻole kāu keiki ka `(Microphthalmia)` a i ʻole `(Anophthalmia),` he mea nui loa ia e ʻimi i ke kōkua o kahi hui lapaʻau loea . Ma waho aʻe o kahi pediatrician laulā a internist paha, pono pinepine kekahi me kēia mau kūlana i nā lawelawe a:

• Kauka maka: He kauka nāna e nānā a mālama i nā maʻi maka a me nā pilikia ʻike.
• Kauka maka: He kanaka hiki ke hana a hoʻokomo i nā mea e like me nā maka hana a me nā conformers.
• Kauka ʻoki maka: He kauka ʻoki i loaʻa i ke aʻo kūikawā ma nā maka, nā orbits, a me nā iwi e hana ana iā lākou.

He manaʻo maikaʻi e hoʻokomo i kēia mau mea a pau ma kāu hui lapaʻau (a i ʻole kāu keiki), a me nā loea e hiki ke kōkua me nā pono ʻē aʻe.

He aha nā kūlana ʻē aʻe e pili pū ana me ka `(Microphthalmia)` a me ka `(Anophthalmia)`?

Hiki ke hana pū ʻia ka Microphthalmia a me ka anophthalmia me nā kūlana olakino ʻē aʻe i loaʻa i ka wā hānau. No ka laʻana, nā deformities o nā lālā (e like me ka polydactyly), nā deformities o ka maka a me ka waha (e like me ka lehelehe māwae a me ka palate), a me nā pilikia noʻonoʻo.

Eia kekahi, hiki ke loaʻa nā kūlana i kapa ʻia ʻo `(Anophthalmia)` a me `(Microphthalmia)` ma ke ʻano he ʻāpana o kekahi mau maʻi hānau. Eia kekahi mau laʻana:

• `(ʻAicardi syndrome)`:He maʻi laha ʻole kēia. Hiki iā ia ke lilo i kekahi mau ʻāpana o ke kino i ka wā hānau. Hiki i ka poʻe me kēia maʻi ke loaʻa nā pilikia olakino no ke ola holoʻokoʻa e like me nā hopu ʻana a me nā lohi o ka ulu ʻana.
• ʻO CHARGE syndrome: He maʻi laha ʻole kēia. Hoʻopilikia ia i nā ʻāpana he nui o ke kino, me nā maka a me ka puʻuwai.
• ʻO ka maʻi SOX2 anophthalmia: Ma waho aʻe o ka nalowale ʻana a i ʻole ka loaʻa ʻana o nā maka liʻiliʻi, hiki i ka poʻe me kēia maʻi ke loaʻa i nā hopu a me nā pilikia lolo.
• ʻO ka maʻi Lenz microphthalmia: Ma waho aʻe o nā maka liʻiliʻi, hiki i nā poʻe me kēia maʻi ke loaʻa i nā neʻe maka i kāohi ʻole ʻia, nā pilikia aʻo, a me nā pilikia me ka ʻōnaehana skeletal a me ka ʻōnaehana urinary.

I kou wā hāpai, hiki iā ʻoe ke hopohopo nui ke ʻike ʻoe he `(Microphthalmia)` a i ʻole `(Anophthalmia)` paha kāu pēpē. He mea maʻamau kēia. Hiki i ke kamaʻilio ʻana me kāu hui lapaʻau ke kōkua iā ʻoe e hoʻomohala i nā hoʻolālā e kōkua i ka hoʻokele ʻana i kēia mau kūlana. Aia nā ``lawelawe hana komo mua`` e kōkua i kāu keiki e aʻo, a aia kekahi mau ``pūʻulu kākoʻo`` e kōkua i kou ʻohana a me kāu keiki e holomua.

Nā mea nui e hoʻomanaʻo (Leka Lawe-Home)

ʻAe, e hōʻuluʻulu kākou i kekahi o nā mea e pono ai ʻoe e hoʻomanaʻo mai nā mea a mākou i kamaʻilio ai:

• ʻO ka Microphthalmia ka wā e liʻiliʻi ai kekahi a i ʻole nā ​​maka ʻelua ma mua o ka maʻamau. ʻO ka Anophthalmia ka wā e nele ai kekahi a i ʻole nā ​​maka ʻelua. He mau kūlana kēia i loaʻa i ka wā hānau .
• ʻOiai ʻaʻole ʻike ʻia ke kumu maoli o kēia, hiki i nā kumu genetic a me ke kaiapuni ke kuleana.
• Hiki ke ʻike mua ʻia kēia mau mea ma o nā hoʻokolohua e like me ka ultrasound a me ka MRI fetal i ka wā hāpai.
• ʻOiai ʻaʻole hiki ke hoʻololi ʻia nā maka hou, hiki iā mākou ke kōkua i nā kānaka e ola maikaʻi me kēia mau kūlana ma o nā "Conformers", "Prosthetic eyes", ke ʻoki kino, a me nā lawelawe kākoʻo kūikawā .
• ʻO ka noho olakino i ka wā hāpai a me ka hahai ʻana i nā ʻōlelo aʻoaʻo lapaʻau e hiki ke kōkua i ka hōʻemi ʻana i ka pilikia o kēia mau kūlana i kekahi ʻano.
• Inā loaʻa iā ʻoe a i ʻole kāu keiki kēia maʻi, mai hopohopo . Me ke kākoʻo o kahi hui lapaʻau loea, ke aloha o ka ʻohana, a me ka mālama pono ʻana, hiki i kāu keiki ke ola i kahi ola maikaʻi.

Manaʻolana wau he mea kōkua kēia ʻike iā ʻoe. Inā he mau nīnau hou aku kāu, e ʻoluʻolu e kamaʻilio me kāu kauka.

microphthalmia , anophthalmia, nā maʻi maka hānau ʻia, nā maka liʻiliʻi, nā maka ʻole, nā kīnā hānau, ophthalmology pediatric