He aha ka Exstrophy o ka Pūpū? Nā Hōʻailona, Nā Kumu, & Lapaʻau

ʻO ka exstrophy o ka pūpū he hemahema hānau maʻamau ʻole ia kahi e ulu ai ka pūpū o ka pēpē ma waho o ko lākou kino ma mua o loko. Hana kēia i ka wā ʻaʻole i pani pono ka paia o ka ʻōpū i lalo i ka wā hāpai mua, e waiho ana i ka pūpū i hōʻike ʻia ma waho o ka ʻōpū.

Hoʻopili kēia kūlana i kahi 1 i kēlā me kēia 30,000 a 50,000 mau hānau, e hana ana iā ia he mea maʻamau ʻole loa. ʻOiai ke kani aku nei ia he mea weliweli, ua hana nā ʻenehana ʻoki hou iā ia he mea mālama maikaʻi loa, a hiki i nā keiki me ka exstrophy o ka pūpū ke ola i nā ola piha a olakino me ka mālama lapaʻau kūpono.

He aha ka exstrophy o ka pūpū?

Hana ʻia ka exstrophy o ka pūpū i ka wā e ulu ai ka pūpū o kāu pēpē ma waho o ko lākou kino ma mua o loko o ka pelvis. Hōʻike ʻia ka pūpū e like me kahi ʻāpana ʻulaʻula, hōʻike ʻia ma ka ʻāpana lalo o ka ʻōpū o ka pēpē, pinepine e like me kahi papa pālahalaha liʻiliʻi.

ʻO kēia kūlana he ʻāpana ia o kahi hui i kapa ʻia ʻo ka exstrophy-epispadias complex. ʻAʻole wale ka pūpū ka mea i hoʻopilikia ʻia - ʻaʻole hoʻi nā ʻiʻo o ka ʻōpū, nā iwi pelvis, a me nā ʻano wahine e ulu i ko lākou ʻano maʻamau. Hoʻokaʻawale ʻia nā iwi pubic, ka mea maʻamau e hui pū ana ma mua.

I nā keikikāne, ʻo ka wehe ʻana o ka penis (urethra) ma luna ma mua o ka piko. I nā kaikamahine, hiki ke māhele ʻia ka clitoris, a hiki ke ʻoi aku ka lahilahi o ka wehe ʻana o ka vagina ma mua o ka maʻamau. Hoʻopili ʻia kēia mau ʻokoʻa a pau i ke ʻano o ka ulu ʻana o ke kino lalo i ka wā hāpai.

He aha nā hōʻailona o ka exstrophy o ka pūpū?

ʻO ka hōʻailona nui o ka exstrophy o ka pūpū e ʻike ʻia koke ma ka hānau ʻana - hiki iā ʻoe ke ʻike i ka pūpū ma waho o ka ʻōpū o kāu pēpē. ʻO kēia pūpū i hōʻike ʻia he ʻulaʻula a pulu, e like me loko o kou waha, no ka mea, ua hana ʻia ia me ke ʻano o ka ʻiʻo like.

Eia nā hōʻailona nui a nā kauka e ʻimi nei:

• Ka pale o ka mimi i hōʻike ʻia ma ka ʻōpū haʻahaʻa e ʻike ʻia ana he ʻulaʻula a me ka pulu
• Kahi hakahaka ma waena o nā iwi pubic e hiki iā ʻoe ke ʻike
• Kahi piko pōkole a ākea hoʻi e noho ana ma lalo o ka maʻamau
• Ka hoʻokahe mau ʻana o ka mimi mai ka hiki ʻole ke mālama pono i ka mimi
• Kahi penis liʻiliʻi ma mua o ka maʻamau i nā keikikāne, pinepine me ka ʻano kūlou
• I nā kaikamāhine, kahi clitoris māhele a me kahi puka vaginal haiki
• Inguinal hernias (nā puʻupuʻu ma ka wahi groin) ka mea e hana pinepine ai i kēia mau pēpē

ʻO ka pulu mau mai ka mimi ke kumu o ka huhū ʻili a puni ka wahi pale mimi i hōʻike ʻia. ʻO ia ke kumu e nānā nui ai nā kauka i ka pale ʻana i ka mimi a me ka ʻili a puni ma hope koke o ka hānau ʻana.

He aha nā ʻano o ka exstrophy mimi?

Hele mai ka exstrophy mimi i nā ʻano like ʻole, ʻo kēlā me kēia e hoʻopilikia iki i kāu keiki ma nā ʻano like ʻole. ʻO ka ʻano maʻamau loa i kapa ʻia ʻo ka exstrophy mimi classic, ka mea a mākou i wehewehe ai a hiki i kēia manawa.

Hana ka exstrophy mimi classic i kahi 60% o nā hihia a pau. I kēia ʻano, ua hōʻike ʻia ka mimi akā noho nā ʻōnaehana ʻē aʻe e like me nā ʻōpū i loko o ke kino. ʻO ka hakahaka ma waena o nā iwi pubic he 2-4 kenimika ākea maʻamau.

ʻO kahi ʻano paʻakikī loa i kapa ʻia ʻo cloacal exstrophy e hoʻopilikia i ka mimi, nā ʻōpū, a me ke kua i ka manawa hoʻokahi. Hana kēia ma kahi o 1 i 200,000 hānau a pono i ka ʻoki kino ākea aʻe. I kēia ʻano, ua hōʻike ʻia kekahi hapa o ka ʻōpū nui, a he pilikia paha me ke kua.

ʻO ka ʻano māmā loa ʻo ia ka epispadias me ka ʻole o ka exstrophy. Maanei, noho ka mimi i loko o ke kino, akā aia ka puka urethra ma kahi kūpono ʻole. Hoʻopili kēia i nā genitalia a i kekahi manawa e paʻakikī ai ke kaohi i ka mimi, akā ʻoi aku ka maʻalahi o ka mālama ʻana ma mua o ka exstrophy mimi piha.

He aha ke kumu o ka exstrophy mimi?

Hiki mai ka exstrophy o ka ʻōpū i nā hebedoma mua loa o ka hāpai ʻana, i ka wā e hoʻokumu ai ke kino o kāu pēpē. Ma waena o ka 4 a me ka 10 mau hebedoma, ua hoʻopio ʻia kekahi mea i ka hoʻomohala maʻamau o ka paia o ka ʻōpū haʻahaʻa a me ka ʻōpū.

ʻAʻole maopopo loa ke kumu pololei, akā manaʻo nā kauka he hui pū ʻana paha ia o nā kumu genetic a me nā kumu kūlohelohe. ʻAʻole ia i hana ʻia e kekahi mea āu i hana ai a ʻaʻole i hana ai i ka wā hāpai - he mea nui kēia e hoʻomaopopo ai no ka mea nui ka poʻe mākua e hoʻopiʻi hewa ʻole iā lākou iho.

Eia nā mea i manaʻo ʻia e ka noiʻi e hiki ke hoʻopili i kēia kūlana:

• Nā loli genetic kūpono ʻole e hoʻopilikia i ke ʻano o ka paia o ka ʻōpū
• Nā pilikia me ka neʻe ʻana o nā cell i ka wā hoʻomohala mua
• Ka hoʻopio ʻia o ke kahe koko i ka wahi ʻōpū e hoʻomohala ana
• Nā kumu kūlohelohe paha, ʻoiai ʻaʻole i ʻike ʻia nā mea kūikawā

ʻO ka hapa nui o nā hihia e hana kūʻokoʻa, ʻo ia hoʻi, e hana kūpono ʻole me ka ʻole o ka mōʻaukala ʻohana. He haʻahaʻa loa ka manawa o ka loaʻa ʻana o ke keiki ʻē aʻe me ka exstrophy o ka ʻōpū, ma lalo o 1 i 100.

I ka wā e ʻike ai i ke kauka no ka exstrophy o ka ʻōpū?

Hoʻomaopopo pinepine ʻia ka exstrophy o ka ʻōpū ma ka hānau ʻana no ka mea ʻike koke ʻia. Inā hānau ʻia kāu pēpē me kēia kūlana, e komo mua ana kāu hui lapaʻau a e hoʻonohonoho ana i ka mālama ʻana ma mua o kou haʻalele ʻana i ka haukapila.

Eia naʻe, inā hāpai ʻoe a ʻaʻole i ʻike ʻia ke kūlana e nā ultrasound maʻamau, eia nā hōʻailona e pono ai ka nānā ʻana i ka lāʻau lapaʻau ma hope o ka hānau ʻana. I kekahi manawa ʻaʻole ʻike maopopo ʻia ke kūlana ma nā scan prenatal, ʻoi aku inā he māmā.

Pono ʻoe e hoʻokaʻaʻike koke i kāu pediatrician inā ʻike ʻoe i kekahi hiʻohiʻona maʻamau ʻole o ka wahi genital a i ʻole ka ʻōpū haʻahaʻa o kāu pēpē hou. E hilinaʻi i kou mau manaʻo - inā ʻokoʻa kekahi mea mai kāu mea i manaʻo ai, ʻoi aku ka maikaʻi o ka nīnau ʻana.

No nā keiki i hana ʻia i ka ʻoki ʻana no ka hoʻoponopono ʻana i ka exstrophy o ka ʻōpū, pono ʻoe ke kāhea aku i kāu kauka inā ʻike ʻoe i nā hōʻailona o ka maʻi e like me ka wela, ka nui o ka ʻulaʻula a puni nā wahi i ʻoki ʻia, a i ʻole ka waimaka kūikawā. Pono nō hoʻi ka hoʻololi ʻana i nā ʻano urination a i ʻole ka ʻeha hou e hoʻoikaika i kahi kāhea i kāu hui mālama ola.

He aha nā kumu pilikia no ka exstrophy o ka ʻōpū?

ʻO ka hapa nui o nā hihia o ka exstrophy o ka ʻōpū e hana kūlohelohe, akā ua ʻike nā mea noiʻi i kekahi mau mea e hiki ke hoʻonui iki i nā manawa. He mea nui e hoʻomanaʻo he mau pilina wale kēia - ʻo ka loaʻa ʻana o nā kumu pilikia ʻaʻole ia he manaʻo e loaʻa i kāu pēpē kēia kūlana.

ʻOi aku ka maʻamau o ke kūlana i nā keikikāne ma mua o nā kaikamahine, e pili ana i 2-3 mau keikikāne no kēlā me kēia kaikamahine. Hoʻomaopopo ʻia nā pēpē keʻokeʻo me ka exstrophy o ka ʻōpū ʻoi aku ka pinepine ma mua o nā pēpē o nā lāhui ʻē aʻe, ʻoiai ke kū nei ke kūlana i nā hui lāhui a me nā lāhui āpau.

Ua pili ka makahiki makua kiʻekiʻe (ma mua o 35) me ka hoʻonui iki ʻana i ka pilikia, akā ʻaʻole ikaika kēia pilina. Ke kuhikuhi nei kekahi mau haʻawina e pili ana kekahi mau lāʻau lapaʻau hānau i ka manawa kiʻekiʻe iki o ka exstrophy o ka ʻōpū, akā ʻaʻole kūpono ka hōʻike.

ʻO ka loaʻa ʻana o ka mōʻaukala ʻohana o ka exstrophy o ka ʻōpū e hoʻonui i ka pilikia, akā he mea maʻamau loa nō ia. Inā hānau ʻia ʻoe a i ʻole kāu hoa me kēia kūlana, ʻo kāu manawa e loaʻa ai kahi keiki i pilikia e pili ana i 1 i 70, ʻoi aku ka kiʻekiʻe ma mua o ka heluna kanaka ākea akā emi iki.

He aha nā pilikia hiki ke loaʻa o ka exstrophy o ka ʻōpū?

ʻOiai hiki ke mālama maikaʻi ʻia ka exstrophy o ka ʻōpū, hiki iā ia ke alakaʻi i kekahi mau pilikia inā ʻaʻole mālama pono ʻia. ʻO ka hoʻomaopopo ʻana i kēia mau mea hiki ke kōkua iā ʻoe e hana pū me kāu hui lapaʻau e pale a i ʻole e hoʻoponopono iā lākou i ka wā mua.

ʻO ka mea nui loa ka pale ʻana i ka ʻōpū mimi i hōʻike ʻia mai ka maʻi a me ka hōʻeha. Hiki ke huhū, pehu, a maʻi paha nā pūnaewele o ka ʻōpū mimi no ka mea e hōʻike mau ʻia ana i ka ea a me nā bacteria. ʻO ia ke kumu e ʻōlelo pinepine ai nā kauka i ka ʻoki kino i loko o nā lā mua o ke ola.

Eia nā pilikia nui e hiki ke ulu:

• Nā maʻi urine tract hou ma muli o ke ʻano ʻōpū mimi kūpono ʻole
• Ka hōʻino ʻana i nā puʻupaʻa mai ka urine e hoʻi ana i nā puʻupaʻa
• Ka pilikia o ka maʻi kanesa ʻōpū mimi, ʻoi aku ka nui i nā kānaka me ka bladder exstrophy (ʻoiai he mea maʻamau ʻole)
• Nā pilikia hānau keiki i nā kāne a me nā wāhine ma muli o nā ʻokoʻa genital
• Nā pilikia hip mai nā iwi pubic i hoʻokaʻawale ʻia e hoʻopilikia ana i ka hele ʻana
• Nā pilikia noʻonoʻo e pili ana i ke kiʻi kino a me nā ʻoki kino hou
• Nā pilikia kaohi ʻōpū inā pili pū ka rectum

ʻO ka ʻoiaʻiʻo maikaʻi, me ka mālama lapaʻau kūpono a me ka hahai mau ʻana, hiki ke pale ʻia a mālama maikaʻi ʻia ka hapa nui o kēia mau pilikia. He nui nā kānaka me ka bladder exstrophy e hele aku e loaʻa nā keiki nona iho a ola i nā ola maʻamau loa.

Pehea e hiki ai ke pale ʻia ka bladder exstrophy?

ʻAʻole maikaʻi, ʻaʻohe ala i ʻike ʻia e pale aku ai i ka bladder exstrophy no ka mea e hana ia i ka wā ulu mua o ka hāpai ʻana. Hana kūpono kēia kūlana i ka hapa nui o nā hihia, a ʻaʻole ia i hana ʻia e kekahi mea a nā mākua e hana ai a ʻaʻole e hana.

ʻO ka lawe ʻana i ka folic acid ma mua a i ka wā hāpai mua he mea ʻōlelo mau ia no nā wāhine a pau, no ka mea e kōkua ana ia e pale aku i kekahi mau hemahema hānau. ʻOiai ʻaʻole ia e pale kūikawā i ka bladder exstrophy, e kākoʻo ana ia i ka ulu olakino holoʻokoʻa.

Inā loaʻa iā ʻoe ka mōʻaukala ʻohana o ka bladder exstrophy, hiki i ka ʻōlelo aʻo genetic ma mua o ka hāpai ʻana ke kōkua iā ʻoe e hoʻomaopopo i kou mau pilikia a me nā koho. Hiki i ka mea aʻo ke wehewehe i nā manawa o ka loaʻa ʻana o kahi keiki i hoʻopilikia ʻia a kūkākūkā i nā koho hoʻokolohua prenatal inā makemake ʻoe.

ʻO ka mālama maʻamau i ka wā hāpai me nā ultrasound kikoʻī ke hiki ke ʻike i ka exstrophy o ka ʻōpū ma mua o ka hānau ʻana. ʻOiai ʻaʻole kēia e pale aku i ke kūlana, ʻo ka ʻike mua e hiki ai i kāu hui lapaʻau ke hoʻolālā no ka hānau ʻana a me ka mālama koke, kahi e hiki ai ke hoʻomaikaʻi i nā hopena no kāu pēpē.

Pehea ka ʻike ʻia ʻana o ka exstrophy o ka ʻōpū?

Hoʻomaopopo pinepine ʻia ka exstrophy o ka ʻōpū ma kekahi o nā ʻano ʻelua: ma mua o ka hānau ʻana ma o ka ultrasound prenatal a i ʻole koke ma hope o ka hānau ʻana ke ʻike ʻia ke kūlana. Loaʻa i kēlā me kēia ala kona manawa a me ke kaʻina hana ponoʻī.

Hiki i ka ʻike prenatal ke hana i kekahi manawa i nā ultrasound maʻamau, maʻamau ma hope o 15-20 mau wiki o ka hāpai ʻana. Hiki i ka mea hana ultrasound ke ʻike ʻaʻole ʻike ʻia ka ʻōpū i kona wahi maʻamau i loko o ka pelvis, a i ʻole hiki iā lākou ke ʻike i ka ʻōpū i hōʻike ʻia ma ka ʻōpū o ke pēpē.

Eia naʻe, ʻaʻole hiki ke ʻike ʻia ka prenatal i nā manawa a pau. Hiki ke nalo ke kūlana ma nā ultrasound, ʻoiai inā he ʻano palupalu a i ʻole inā paʻakikī ka kūlana o ke pēpē e ʻike maopopo ai. ʻO ia ke kumu i ʻike ʻia ai kekahi mau hihia i ka wā hānau wale nō.

Ma hope o ka hānau ʻana, koke a me ka maka ka ʻike. E nānā pono kāu hui lapaʻau i kāu pēpē a hiki ke kauoha i nā hoʻokolohua hou e like me:

• Ultrasound o ka puʻupaʻa e nānā ai i nā pilikia puʻupaʻa pili
• Nā X-ray e ʻike i ka hoʻokaʻawale ʻana o nā iwi pubic
• Nā hoʻokolohua koko e nānā i ka hana o ka puʻupaʻa
• Hoʻokolohua genetika inā aia nā hōʻailona o kahi syndrome

E loiloi pū kāu hui lapaʻau i ka nui o ke kūlana e hoʻolālā i ke ala mālama maikaʻi loa. Kūleʻa kēia loiloi iā lākou i ka hoʻomaopopo ʻana i nā ʻano i hoʻopilikia ʻia a me ka paʻakikī o ka hoʻoponopono.

He aha ka mālama no ka exstrophy o ka ʻōpū?

ʻO ka mālama ʻana no ka exstrophy o ka ʻōpū e pili ana i ka ʻoki kino, akā ʻo ka manawa a me ke ala e hilinaʻi ana i ke kūlana kikoʻī o kāu pēpē. ʻO ka pahuhopu nui, ʻo ia ke hoʻoneʻe i ka ʻōpū i loko o ke kino, pani i ka paia o ka ʻōpū, a kōkua i kāu keiki e loaʻa ka urination maʻamau a me ka continence.

ʻO ka hapa nui o nā pēpē e pono ai kā lākou hana ʻoki mua i loko o 48-72 mau hola ma hope o ka hānau ʻana. ʻO kēia hana mua, i kapa ʻia ʻo ka pani mua, e pili ana i ka waiho ʻana i ka ʻōpū i loko o ka ʻōpū a me ka pani ʻana i ka hakahaka ma ka paia o ka ʻōpū. E hoʻokokoke pū ke kauka i nā iwi pubic i hoʻokaʻawale ʻia.

E pono paha i kāu keiki nā hana ʻoki hou aʻe i ko lākou ulu ʻana. ʻO ka hana ʻoki nui ʻelua e hana mau ʻia ma waena o nā makahiki 2-4 e kōkua i ka loaʻa ʻana o ka continence urinary (ka hiki ke hoʻopaʻa i ka mimi). Hiki paha kēia ke hoʻokumu i kahi ʻāʻī hou o ka ʻōpū a i ʻole nā ​​hoʻololi ʻē aʻe e kōkua i kāu keiki e kaohi i ka mimi.

ʻO ka papahana lapaʻau e komo pinepine ana:

• Hana ʻoki pani mua i nā lā mua o ke ola
• Hoʻoponopono ʻana i ka ʻāʻī o ka ʻōpū ma waena o nā makahiki 2-4
• Nā hana ʻoki hoʻoponopono genital e hoʻomaikaʻi i ke ʻano a me ka hana
• Nā hana hou paha no ka continence inā pono
• Nā kipa hahai mau e nānā i ka hana o ka puʻupaʻa a me ka ulu ʻana

Pono paha kekahi mau keiki i ka catheterization intermittent maʻemaʻe (CIC) e hoʻopau loa i kā lākou ʻōpū. E pili ana kēia i ka hoʻokomo ʻana i kahi tube liʻiliʻi i loko o ka ʻōpū i nā manawa he nui i ka lā, a nui nā keiki e aʻo e hana i kēia iā lākou iho i ko lākou ulu ʻana.

Pehea e hoʻokele ai i ka mālama home i ka wā o ka mālama ʻana i ka exstrophy o ka ʻōpū?

ʻO ka mālama ʻana i kahi keiki me ka exstrophy o ka ʻōpū ma ka home e pono ai kekahi nānā kūikawā, akā e lilo ia i mea maʻamau me ka hoʻomaʻamaʻa. E aʻo aku kāu hui lapaʻau iā ʻoe i nā mea āpau āu e pono ai e ʻike, a e loaʻa iā ʻoe ka nui o ke kākoʻo i ke ala.

Ma mua o ka hana ʻoki mua, pono ʻoe e pale i ka ʻōpū i hōʻike ʻia ma ka uhi ʻana me kahi ʻili plastik maopopo a mālama iā ia i ka pulu me ka wai saline. E hōʻike aku kāu nēnē iā ʻoe i ke ʻano pololei, a ʻoi aku ka maʻalahi ma mua o kāu e manaʻo ai.

Ma hope o nā hana ʻoki, e lilo ka mālama ʻana i ka ʻeha i mea nui. E aʻo ʻoe pehea e mālama ai i nā wahi ʻoki i maʻemaʻe a maloʻo, e nānā i nā hōʻailona o ka maʻi, a e hāʻawi i nā lāʻau lapaʻau e like me ke kauoha ʻia. Hoʻōla maikaʻi ka hapa nui o nā keiki a hoʻololi koke i kā lākou papa hana mālama.

Eia nā mea maʻamau e komo ai i ka mālama home:

• Hāʻawi ʻana i nā lāʻau antibiotic e like me ke kauoha ʻia e pale aku i nā maʻi o ke ala mimi
• Aʻo ʻana i nā ʻano catheterization inā pono kāu keiki
• Nānā ʻana i nā hōʻailona o ka maʻi e like me ka wela, ka hoʻokuʻu ʻana maʻamau ʻole, a i ʻole ka ʻeha nui
• Mālama ʻana i nā hālāwai hoʻomau no ka nānā ʻana i nā ʻeha a me ka nānā ʻana i ka holomua
• Mālama ʻana i ka maʻemaʻe maikaʻi a puni nā wahi genital a me nā wahi ʻoki
• Hoʻoikaika ʻana i nā hana maʻamau ʻoiai e hahai ana i nā palena o ka neʻe ʻana

Hiki i kāu keiki ke komo i ka hapa nui o nā hana maʻamau o ke kamaliʻi. ʻO ka ʻauʻau ʻana he mea maikaʻi ma hope o ka hoʻōla ʻana o nā wahi ʻoki, a hiki ke hana i ka hapa nui o nā haʻuki me kekahi mau hoʻololi. E alakaʻi aku kāu hui lapaʻau iā ʻoe ma nā palena kūikawā.

Pehea ʻoe e hoʻomākaukau ai no kāu hālāwai me ke kauka?

ʻO ka hoʻomākaukau ʻana no nā hālāwai e kōkua iā ʻoe e hoʻohana pono i kou manawa me ka hui lapaʻau a e hōʻoiaʻiʻo ʻoe e loaʻa nā pane a pau i kāu mau nīnau. He mea nui loa kēia i ka wā e hoʻokele ai i kahi kūlana paʻakikī e like me ka exstrophy o ka ʻōpū mimi.

E kākau i kāu mau nīnau ma mua o kēlā me kēia kipa, ʻoiai he maʻalahi ke poina i nā hopohopo nui i ka wā e noho ana ʻoe i ka hālāwai. E mālama i kahi puke a i ʻole papa inoa kelepona o nā hōʻailona, ​​​​nā loli, a i ʻole nā ​​hopohopo āu i ʻike ai mai ka kipa hope loa.

E lawe mai i kahi papa inoa o nā lāʻau a pau āu keiki e lawe ai, me nā dosages a me ka pinepine o ka lawe ʻana. E lawe mai pū i nā hopena hoʻokolohua hou a i ʻole nā ​​moʻolelo mai nā kauka ʻē aʻe inā ua ʻike ʻoe i nā loea ma nā wahi ʻē aʻe.

E noʻonoʻo e lawe mai i kahi lālā ʻohana a hoaaloha kōkua i nā hālāwai, ʻoi aku hoʻi no nā kipa hoʻolālā ʻoki. Hiki iā lākou ke kōkua iā ʻoe e hoʻomanaʻo i ka ʻike a hāʻawi i ke kākoʻo manaʻo i ka wā e kūkākūkā ana e pili ana i nā koho mālama.

E hoʻomākaukau i nā nīnau kūikawā e pili ana i ka ulu ʻana o kāu keiki, nā ʻoki ʻana i ka wā e hiki mai ana, nā palena hana, a me ka nānā ʻana i ka wā lōʻihi. Mai kānalua e nīnau e pili ana i kekahi mea e hopohopo ai ʻoe, ʻoiai inā he mea liʻiliʻi paha ia.

He aha ka mea nui e pili ana i ka exstrophy o ka ʻōpū mimi?

ʻO ka exstrophy o ka ʻōpū mimi he maʻi koʻikoʻi akā hiki ke mālama ʻia maikaʻi loa e pili ana i nā pēpē mai ka hānau ʻana mai. ʻOiai e pono ai nā ʻoki kino he nui a me ka mālama ola kino mau, ʻo ka hapa nui o nā keiki me kēia maʻi e ulu a ola i nā ola piha, olakino, a hana nui.

ʻO ka mea nui loa e hoʻomanaʻo ai ʻaʻole ʻoe wale nō ma kēia huakaʻi. Loaʻa i nā hui urology pediatric ka ʻike nui i ka mālama ʻana i ka exstrophy o ka ʻōpū mimi, a aia nā hui kākoʻo a me nā kumuwaiwai e kōkua i nā ʻohana e hoʻokele i nā pilikia.

Me ka mālama ola kino kūpono, loaʻa i ka hapa nui o nā keiki ka hoʻomaʻemaʻe maikaʻi o ka mimi a me ka hana maʻamau o ka puʻupaʻa. Hiki iā lākou ke komo i nā haʻuki, hele i ke kula maʻamau, a hahai i kā lākou mau moeʻuhane e like me kekahi keiki ʻē aʻe. ʻO ke kī ʻo ka hana pili loa me kāu hui lapaʻau a hahai i ka hoʻolālā mālama.

E hoʻomanaʻo he kū hoʻokahi ka huakaʻi o kēlā me kēia keiki, a ke hoʻomaikaʻi mau nei nā hopena i ka holomua ʻana o nā ʻenehana ʻoki kino. E noʻonoʻo mau, e nīnau i nā nīnau, a e hoʻolauleʻa i nā lanakila liʻiliʻi ma ke ala.

Nā nīnau pinepine e pili ana i ka exstrophy o ka ʻōpū mimi

Hiki i kaʻu keiki me ka exstrophy o ka ʻōpū mimi ke loaʻa nā keiki nona iho i kekahi lā?

ʻAe, hiki i nā kānaka he nui me ka exstrophy o ka ʻōpū mimi ke loaʻa nā keiki, ʻoiai paha he haʻahaʻa iki ka nui o ka hānau keiki ma mua o ka awelika. ʻOi aku ka maikaʻi o nā hopena hānau keiki o nā kāne ma mua o nā wāhine, akā hiki ke hāpai keiki nā wāhine me ka exstrophy o ka ʻōpū mimi.

Ke kōkua nei nā ʻoki kino hou e hoʻomaikaʻi i ka hana a me ke ʻano, ka mea e kākoʻo ai i nā pilina pilikino maʻamau. E kūkākūkā kāu hui lapaʻau keiki i nā koho mālama hānau ke kūpono ka makahiki a pane i nā nīnau e pili ana i ka hoʻolālā ʻohana.

E pono anei i kaʻu keiki ke hoʻohana i nā catheters mau loa?

ʻAʻole pono. Loaʻa i nā keiki he nui me ka exstrophy o ka ʻōpū mimi ka hoʻomaʻemaʻe ma hope, me ka ʻole o ka pono ʻana i nā catheters, ʻoi aku hoʻi me ka ʻoki kino kūleʻa o ka ʻāʻī o ka ʻōpū mimi. Eia naʻe, pono kekahi mau keiki e hoʻohana i ka catheterization intermittent maʻemaʻe.

Inā pono ka catheterization, ʻo ka hapa nui o nā keiki e aʻo e hana iā ia iho ma mua o ka makahiki kula. Liuliu ia i ʻāpana maʻamau o ko lākou lā, e like me ka holoi niho, ʻaʻole hoʻi e pale aku iā lākou mai ka komo ʻana i nā hana maʻamau.

Ehia mau ʻoki kino e pono ai kaʻu keiki?

ʻO ka hapa nui o nā keiki e pono ai 2-4 mau ʻoki kino nui, akā ʻo ka helu pololei e hilinaʻi ana i ke kino kūikawā o kāu keiki a me ka maikaʻi o ka pane ʻana i ka mālama. ʻO ka ʻoki kino mua e hana ʻia i ka wā hānau, a laila nā kaʻina hana continence ma waena o nā makahiki 2-4.

Hiki ke pono nā ʻoki kino hou aku no ka hana hou ʻana i nā ʻano genital a i ʻole inā piʻi mai nā pilikia. E kūkākūkā kāu hui ʻoki kino i ka manawa i manaʻo ʻia a kōkua iā ʻoe e hoʻomākaukau no kēlā me kēia kahua.

Hiki ke ʻike ʻia ka exstrophy bladder i ka wā hāpai?

I kekahi manawa, akā ʻaʻole mau. Hiki ke ʻike ʻia ka exstrophy bladder ma nā ultrasounds kikoʻī ma hope o kahi 15-20 mau wiki o ka hāpai ʻana, akā pinepine ʻia e hala. Ke holomua nei ka nui o ka ʻike ʻana me ka ʻenehana ultrasound maikaʻi a me nā loea akamai hou aku.

ʻOiai inā ʻike ʻia ma mua o ka hānau ʻana, ʻaʻole ia e hoʻololi i ke ʻano o ka mālama ʻana, akā hāʻawi ia i nā ʻohana e hoʻomākaukau i ka manaʻo a me ka lojistika no nā pono mālama o kā lākou pēpē.

Pehea ka nānā lōʻihi no nā keiki me ka exstrophy bladder?

He maikaʻi loa ka nānā lōʻihi me ka mālama kūpono. ʻO ka hapa nui o nā keiki e loaʻa ka continence, loaʻa ka hana kidney maʻamau, a ola i nā ola maʻamau loa. Ke hele nei lākou i ke kula maʻamau, komo i nā haʻuki, alualu i nā ʻoihana, a loaʻa i nā ʻohana ponoʻī.

He mea nui ka hahai mau ʻana me ka hui urology i loko o ke ola a pau e nānā i ka hana kidney a me ke olakino bladder. Me ka mālama lapaʻau maikaʻi, hiki i nā kānaka me ka exstrophy bladder ke manaʻo i ka lōʻihi ola maʻamau a me ka maikaʻi o ke ola.