He pōkole a ua hui pū ʻia paha nā manamana lima o kāu keiki liʻiliʻi? E kamaʻilio kākou e pili ana iā Symbrachydactyly.

ʻAuē, ua hānau ʻia kāu pēpē me nā manamana lima pōkole a hui iki paha? He mea maʻamau iā ʻoe ma ke ʻano he makuahine ke kaumaha nui a makaʻu hoʻi ke ʻike ʻoe i kēia. Ua kapa mākou i kēia ma ke ʻano lapaʻau he `(Symbrachydactyly)`. ʻOiai paha he mea ʻē iki ka inoa, ke ʻike pono ʻoe iā ia, e emi nui ana kou makaʻu. E kamaʻilio kākou e pili ana i kēia me nā kikoʻī, ʻeā?

He aha kēia (Symbrachydactyly)? E hoʻomaopopo maʻalahi kākou!

I ka ʻōlelo maʻalahi, ʻo `(Symbrachydactyly)` kahi maʻi i loaʻa i ka wā hānau . ʻO kēia ka wā ʻaʻole i ulu pono nā manamana lima o kahi pēpē (a i kekahi manawa nā manamana wāwae, akā ʻo ka hapa nui o nā lima). ʻO ke ʻano kēia, ʻoi aku ka pōkole o nā manamana lima ma mua o ka maʻamau, a i ʻole e hui pū ʻia nā manamana lima ʻelua a ʻekolu paha, a i kekahi manawa e nalowale loa kekahi mau manamana lima. Hiki i kēia ke hoʻopilikia i ke ʻano o ka lima a me kāna hana.

E noʻonoʻo wale i ka nui o nā mea a ko kākou mau manamana lima ʻelima e kōkua ai iā kākou. ʻO ka paʻa ʻana i kahi mea liʻiliʻi, ke kākau ʻana, ka ʻai ʻana, nā mea āpau. No laila, he mea paʻakikī paha i kahi pēpē i hānau ʻia me kēia maʻi ke hana i kēlā mau mea. Akā, mai hopohopo, me nā lāʻau lapaʻau holomua i loaʻa i kēia lā, hiki ke hoʻōla nui ʻia kēia maʻi.

Pehea ka maʻamau o kēia ʻano (Symbrachydactyly)?

He maʻi laha ʻole kēia. Ma ka honua holoʻokoʻa, hoʻokahi wale nō i loko o 32,000 mau pēpē i hānau ʻia i kēlā me kēia makahiki e hoʻopilikia ʻia e kēia maʻi (Symbrachydactyly). No laila, ʻaʻole kēia kou pilikia wale nō, a he mea laha ʻole nō hoʻi.

Pehea ka hopena o Symbrachydactyly i ke kino o kahi pēpē?

ʻO ka hopena nui ma ka hana a me ke ʻano o ka lima . Ma muli o nā kīnā o nā manamana lima, he mea paʻakikī iki paha i ka pēpē ke hopu i nā mea a hana i ka hana lima. Eia kekahi, ʻokoʻa paha ke ʻano o ka lima mai ka lima maʻamau.

Akā, he mea nui e hoʻomaopopo i ka hapanui o ka manawa e hoʻopilikia wale kēia ʻano i hoʻokahi lima (`(Unilateral)`) . He mea kākaʻikahi loa ia e hoʻopilikia i nā lima ʻelua.

Ua hoʻokaʻawale nā ​​kauka i kēia maʻi (Symbrachydactyly) i ʻehā ʻano nui. E kamaʻilio iki kākou e pili ana i kēlā mau ʻano.

He aha nā ʻano nui o Symbrachydactyly?

Hoʻokumu ʻia kēia hoʻokaʻawale ʻana ma ke ʻano o ka hopena ma nā manamana lima.

1. Symbrachydactyly manamana lima pōkole (ʻAno 1):

I kēia ʻano, loaʻa paha i ka pēpē kahi manamana nui a me nā manamana lima ʻehā. Eia naʻe, ʻoi aku ka pōkole o kēia mau manamana lima ma mua o ka maʻamau . Hiki ke nalowale kekahi o nā iwi ma nā hono manamana lima (`(Phalanges)`).

2. ʻO ka symbrachydactyly Oligodacylic (ʻAno 2):

I kēia hihia, loaʻa paha i ka pēpē kahi manamana nui a me ka manamana lima liʻiliʻi (pinky), akā ʻo ka manamana waena ma waena o lāua e nalowale ana paha a ʻaʻole paha e ulu pono . I kekahi manawa hiki ke like kēia me kahi "lima māwae atypical".

3.Monodactyly symbrachydactyly (ʻAno 3):

E like me ka inoa e hōʻike nei, ma kēia ʻano kūlana, hoʻokahi wale nō manamana lima o ka pēpē i ulu piha (ʻo ka manamana nui maʻamau) . ʻO nā manamana lima ʻehā ʻē aʻe he mau puʻupuʻu liʻiliʻi paha (`(Remnants or nubbins)`) a i ʻole nā ​​​​ʻāpana i ulu hapa ʻia. ʻO ke ʻano kēia, ʻaʻole i hana pono ʻia nā mea e like me nā iwi a me nā ʻiʻo.

4. E paʻi me ka ʻole o nā manamana lima (`(Peromelic symbrachydactyly - ʻAno 4)`):

ʻO kēia ka hihia koʻikoʻi loa. I kēia hihia , ʻaʻole e hoʻopilikia ʻia ka manamana nui a me nā manamana lima ʻē aʻe .

ʻOiai ke ʻano o kāu pēpē, e ʻike nā kauka iā ia i ka wā hānau. A laila e kuhikuhi paha lākou iā ʻoe i kahi kauka lima pediatric .

He aha nā hōʻailona o (Symbrachydactyly)?

ʻO ka hōʻailona nui wale nō o kēia maʻi, ʻo ia ka pōkole ʻana o nā manamana lima o ka pēpē, ka hui pū ʻana, a i ʻole ka nalowale ʻana i ka wā hānau . ʻIke pinepine ʻia kēia ma ka lima hoʻokahi.

Ma muli o kēia mau kīnā o ka manamana lima, aia paha he mau mea ʻē aʻe i loko o nā ʻiʻo ma lalo:

• Nā Iwi (`(Nā Iwi)`)
• Nā ʻiʻo (`(Nā ʻiʻo)`)
• Nā ligaments
• Nā ʻūmiʻi
• Nā aʻalolo (`(Nā aʻalolo)`)

He aha ke kumu o ka Symbrachydactyly?

ʻO kaʻoiaʻiʻo, ʻaʻohe kumu kikoʻī i loaʻa no ka `(Symbrachydactyly)`. Manaʻo kekahi poʻe loea he kumu paha ia e kahi kūlana i kapa ʻia ʻo `(Vascular dysgenesis)` e hoʻopilikia ana i ke kahe koko i nā lima o ka pēpē i ka wā e ulu ana ka pēpē i loko o ka ʻōpū. ʻO ia hoʻi, i ka wā ʻaʻole maikaʻi ke kahe koko, ʻaʻole e ulu pono nā ʻāpana o nā lima.

ʻO ka mea nui, ʻaʻole kēia he maʻi hoʻoilina a i ʻole he pilikia hoʻoilina. ʻO ia hoʻi, hiki i kahi pēpē ke loaʻa iā ia ʻoiai inā ʻaʻohe makua i loaʻa iā ia, a ʻaʻole e hoʻoili ke kanaka me ke ʻano i kā lākou mau keiki. He hanana maʻamau kēia. No laila, mai hopohopo a noʻonoʻo, "He hewa anei koʻu?"

Pehea e ʻike ai i ka maʻi (Symbrachydactyly)?

I ka hapa nui o ka manawa, hiki i nā kauka ke ʻike i kēia kūlana i ka wā e hānau ai kahi pēpē . Hiki iā lākou ke ʻike inā he "Symbrachydactyly" a, inā pēlā, he aha ke ʻano, ma ka nānā ʻana i nā loli i nā lima o ka pēpē.

I kekahi manawa, hiki ke ʻike mua ʻia kēia ʻano i ka wā o nā scan ultrasound (`(Prenatal ultrasound)`) āu e loaʻa ai i ka wā hāpai.

Ma mua o ka hoʻomaka ʻana o ka lāʻau lapaʻau, hiki ke hana ʻia kahi X-ray e nānā i ke kūlana o nā iwi i loko o ka lima o ke pēpē.

He aha nā lāʻau lapaʻau no (Symbrachydactyly)?

I ka hapanui o nā hihia, ʻo ke ʻoki ʻana ke ʻano nui o ka lāʻau no Symbrachydactyly.Eia nō naʻe, ʻaʻole pono nā pēpē a pau i ke ʻoki kino, a ʻokoʻa ke ʻano o ke ʻoki kino e pono ai mai kēlā pēpē a i kēia pēpē, ma muli o ke ʻano o ke kūlana.

Lapaʻau ma ke ʻoki kino

ʻO ka maʻamau, ʻaʻole ʻōlelo nā kauka i ke ʻoki ʻana a hiki i ka wā i piha ai kahi pēpē i hoʻokahi a ʻelua paha makahiki , no ka mea, i kēlā manawa, ua ulu iki nā ʻiʻo o ke pēpē a ua hiki iā lākou ke kū i ke ʻoki ʻana.

ʻO ka pahuhopu nui o ke ʻoki ʻana, ʻo ia ke hoʻihoʻi i ka lima o ke pēpē i kāna hana maʻamau a me kona helehelena . I kekahi manawa, ʻaʻole lawa ka ʻoki hoʻokahi, a pono paha nā ʻoki he nui.

I ka wā o ke ʻoki ʻana, hiki i nā kauka ke hoʻohana i nā ʻili ʻili a i ʻole nā ​​​​ʻiʻo ʻē aʻe mai ka lima e pani i nā hakahaka ma waena o nā manamana lima, a i ʻole e hoʻāʻo e hoʻokaʻawale i nā manamana lima. ʻO kēia ka mea e maʻalahi ai i ka pēpē ke hopu i nā mea a hoʻohana i ko lākou mau lima.

I kekahi mau hihia koʻikoʻi, ʻoiai inā nalowale loa nā manamana lima, aia kekahi ʻano hana i kapa ʻia ʻo "Toe transfer" kahi e lawe ʻia ai kahi manamana wāwae mai ka wāwae ponoʻī o ka pēpē a hoʻoili ʻia i ka lima . Ke lohe ʻoe i kēia, makaʻu paha ʻoe, "Auē, he aha ka mea e hiki mai ana i ka wāwae?" Akā, mai makaʻu iā ia. Inā paha e lawe ʻia kahi manamana wāwae mai ka wāwae ma kēia ʻano, ʻaʻole e pilikia ka pēpē i ke kū ʻana, ka hele ʻana, ka holo ʻana, a i ʻole ka lele ʻana. Eia nō naʻe, e hoʻomaikaʻi nui ʻia ka hana o ka lima.

E wehewehe pono ke kauka lapaʻau iā ʻoe i ke ʻano o ke ʻoki kino e pono ai kāu pēpē a me nā mea e manaʻo ai ma hope. I ia mau hihia, he mea nui loa ka mālama ʻana i ka pēpē i ka wā mua, ma mua o kona ulu piha ʻana.

Nā lāʻau lapaʻau ʻoki ʻole

Loaʻa i kekahi mau keiki ka pōmaikaʻi mai nā lāʻau lapaʻau ʻoki ʻole ma mua a ma hope paha o ke ʻoki ʻana.

• Ke kau nei i kahi mea pale a i ʻole splint: ʻO ke kau ʻana i kēia mau mea e hiki ke kōkua i ka hoʻolōʻihi a me ka hoʻoikaika ʻana i nā manamana lima ma kou lima.
• Prosthesis: Hiki i kekahi mau keiki ke hoʻohana i kahi lima prosthetic e kōkua iā lākou e hopu i nā mea a hana i nā hana.
• Hoʻōla kino: Ma hope o ke ʻoki kino, he mea nui loa ka hoʻōla kino e aʻo i kāu pēpē e hoʻohana i kona lima me ka maikaʻi loa. Hoʻoikaika kēia i nā ʻiʻo o ka lima a hoʻonui i ka laulā o ka neʻe ʻana.

E kamaʻilio me kāu kauka e hoʻoholo i ka lāʻau lapaʻau kūpono loa no kāu pēpē.

ʻEhia ka lōʻihi e ho'ōla ai mai ke ʻoki kino (Symbrachydactyly)?

Aia maoli kēia i ke ʻano o ke ʻoki kino i loaʻa i kāu pēpē. E hāʻawi kāu kauka a kauka ʻoki paha iā ʻoe i nā kuhikuhi no ka mālama ʻana i ka lima o kāu pēpē ma hope o ke ʻoki kino. He mea nui loa ia e hahai pololei i kēlā mau kuhikuhi.

Pehea e hiki ai iaʻu ke pale aku i ka Symbrachydactyly?

ʻOiaʻiʻo, ʻaʻohe mea hiki iā ʻoe ke hana e pale aku i kēia maʻi (Symbrachydactyly) mai ka hanana ʻana i kou wā hāpai. No ka mea, e like me kā mākou i kūkākūkā ai ma mua, ʻaʻohe kumu kikoʻī i loaʻa no ia.

Eia nō naʻe, ma ke ʻano laulā, aia kekahi mau mea e hoʻonui ai i ka pilikia o nā kīnā hānau. ʻOi aku ka maikaʻi o ka pale ʻana i kēia mau mea i ka wā hāpai:

• Ka inu ʻana i ka waiʻona.
• Ka puhipaka a i ʻole ka hoʻohana ʻana i nā huahana paka ʻē aʻe.
• Ka hoʻohana ʻana i nā lāʻau lapaʻau no ka leʻaleʻa.

E kamaʻilio me kāu kauka no ka ʻōlelo aʻo e pili ana i nā mea āu e pono ai a me nā mea ʻaʻole pono e ʻai a inu paha i ka wā hāpai.

Inā loaʻa ka Symbrachydactyly i kaʻu pēpē, he aha kaʻu e manaʻo ai?

ʻOiai inā ua ʻike ʻia kāu pēpē me ka `(Symbrachydactyly),` ʻaʻole kēia maʻi e hoʻopilikia i ka ulu maʻamau o ka pēpē a i ʻole ka ulu ʻana o ka noʻonoʻo . ʻO ia hoʻi, e ulu maikaʻi kāu pēpē a hauʻoli e like me nā keiki ʻē aʻe.

Eia nō naʻe, inā ʻike ʻia kekahi kīnā hānau a i ʻole kekahi maʻi olakino me Symbrachydactyly, pono paha kāu pēpē i kahi lāʻau lapaʻau a mālama ʻē aʻe. Na kāu kauka e wehewehe i kēia iā ʻoe.

Āhea wau e ʻike ai i ke kauka?

Inā ʻike ʻoe i kekahi mau loli i nā lima o kāu pēpē, e kamaʻilio me kāu kauka e pili ana i ia mea. ʻOi loa aku inā ua hana ʻia ke ʻoki kino, e nānā i kekahi o kēia mau hōʻailona ma kahi i ʻoki ʻia ai:

• Ke kahe ʻana o ke koko.
• Ka loli ʻana o ke kala (polū, ʻulaʻula).
• He pehu.
• Ka hoʻokuʻu ʻia ʻana o ka pus a i ʻole kekahi wai ʻē aʻe.
• Inā ʻike ʻia ka pēpē e ʻeha ana a i ʻole he mea hoʻomaha ʻole loa.

Inā ʻike ʻoe i kekahi mea e like me kēia, e ʻike koke i ke kauka.

He aha nā nīnau e pono iaʻu e nīnau aku i ke kauka?

E nīnau i kāu kauka e pili ana i nā nīnau a hopohopo paha āu e loaʻa ai. Eia kekahi laʻana:

• He aha ke ʻano o ka Symbrachydactyly i loaʻa i kaʻu pēpē?
• He aha ke ʻano o ke ʻoki kino e pono ai iā ia?
• Ehia mau ʻoki kino e pono ai?
• I ka makahiki hea e pono ai ʻo ia e hana ʻoki kino?
• E pono anei i kaʻu pēpē ka hoʻōla kino a i ʻole nā ​​​​lāʻau lapaʻau ʻē aʻe ʻaʻole ʻokiʻoki?

He mea nui loa iā ʻoe a me kāu pēpē e nīnau i nā nīnau e like me kēia a hoʻomaopopo pono i nā mea āpau.

ʻO ka mea hope loa, nā mea e hoʻomanaʻo ai (Leka Lawe-Home)

ʻO Symbrachydactyly kahi kūlana i hoʻopōkole ʻia ai nā manamana lima o kahi pēpē a i ʻole i hoʻohui ʻia i ka wā hānau. Hiki i kēia ke hoʻopilikia i ka hiki o kahi pēpē ke hoʻohana i ko lākou mau lima no ke ola. Eia nō naʻe, ʻo ka hānau ʻia ʻana me kahi kīnā lima hānau ʻole ʻaʻole ia he manaʻo ʻaʻole e hauʻoli a olakino kāu keiki.

Pono pinepine ke ʻoki kino e hoʻomaikaʻi i ka hana o ka lima. Ma hope o kēlā, pono paha nā mea e like me ka hoʻōla kino e hoʻomaikaʻi i ka hana o ka lima. Eia naʻe, ʻaʻole pili ke kūlana `(Symbrachydactyly)` i ka ulu ʻana a i ʻole ka ulu ʻana o ka noʻonoʻo o kekahi ʻāpana ʻē aʻe o ke kino o ka pēpē.

E aʻo ana kāu pēpē e hana me ke ao nei ma kona ʻano ponoʻī, e like me nā keiki ʻē aʻe. ʻO kou aloha, kākoʻo, a me ka hoʻoikaika ʻana nā mea nui iā ia.

Inā makemake ʻoe e ʻike hou aʻe e pili ana i kēia, mai makaʻu e kamaʻilio me kāu kauka. E kōkua lākou iā ʻoe i kēlā me kēia ʻanuʻu o ke ala.

`ʻO Symbrachydactyly, nā kīnā hānau, nā kīnā lima, ke kuʻi ʻana o ka manamana lima, ka hohola ʻana o ka manamana lima, ke olakino o ke keiki, ke ʻoki kino