Ke puka mai nei ka ʻōpū mimi o kāu pēpē? E kamaʻilio kākou e pili ana i ka Bladder Exstrophy!

Ke nānā aku ka makuahine a makua paha i kahi pēpē hānau hou, manaʻo lākou e ʻike i kahi keiki olakino a piha. Akā e noʻonoʻo, pehea inā ʻike ʻoe i ka ʻōpū mimi o kahi pēpē e puka mai ana mai ka ʻili ma ko lākou ʻōpū? He hiʻohiʻona puʻuwai a weliweli hoʻi ia. ʻO kēia ka mea a mākou e kapa nei he Bladder Exstrophy i ka lāʻau lapaʻau. He mea kūpono loa ke makaʻu a hopohopo ke ʻike ʻoe i kēia. Akā ʻo ka mea nui loa, aia kahi lāʻau lapaʻau holomua no kēia. No laila e kamaʻilio kākou e pili ana i nā mea āpau me ka maopopo a me ka maʻalahi.

I ka ʻōlelo maʻalahi, he aha ka Bladder Exstrophy?

He maʻi hānau laha ʻole ka bladder exstrophy. ʻO ka maʻamau, i ka wā e ulu ana kahi pēpē i loko o ka ʻōpū, ulu nā ʻōpū o loko, me ka ʻōpū mimi, i loko o ke kino. Eia nō naʻe, i kēia kūlana, ulu ka ʻōpū mimi o ka pēpē ma waho o ke kino, e hōʻike ʻia ana i ka ʻili ma ka ʻōpū lalo.

Ma kēia kūlana, penei ka mea e hana ʻia:

• ʻAʻole pili pono ka ʻili a me nā iwi pelvic ma ka ʻōpū lalo.
• No laila, ʻike ʻia ka ʻōpū mimi ma o ka ʻili o ka ʻōpū.
• ʻO ka ʻōpū mimi, kahi mea e like me ka pōpō pehu, ma kēia hihia he ʻano pālahalaha kona.
• ʻO ka hopena, ʻaʻole hiki i ka ʻōpū mimi ke hoʻopaʻa i ka mimi a hana maʻamau paha. Ke hoʻomau nei ka mimi i ka liki ʻana i waho.

Pehea ka hopena o kēia maʻi i ke kino o ka pēpē?

E nānā kākou i ke ʻano o ka hana maʻamau o ka ʻōnaehana mimi. Ke piha kou ʻōpū mimi i ka mimi, hoʻouna ʻia kahi hōʻailona mai ka ʻōnaehana nerve i ka lolo e ʻōlelo ana, "Ua piha ka ʻōpū mimi i kēia manawa." A laila e ʻaelike nā ʻiʻo o ka ʻōpū mimi (ʻaelike), a hoʻokuʻu ʻia ka mimi ma o ka urethra.

Akā, ʻaʻole kēia kaʻina hana e hana ʻia i loko o kahi pēpē me ka Bladder Exstrophy. No ka mea, aia ka ʻōpū o ke pēpē ma waho, ʻaʻohe wahi no ka mimi e hōʻiliʻili ai. No laila, kahe pololei ka mimi i hana ʻia e nā puʻupaʻa i waho ma o kēia ʻōpū hāmama i loko o ka ʻōpū.

Aia kekahi mau ʻano like ʻole o ka exstrophy bladder?

ʻAe, ʻo Bladder Exstrophy kahi maʻi e pili ana i kahi hui o nā kīnā hānau i kapa ʻia ʻo Bladder Exstrophy-Epispadias Complex (BEEC). Loaʻa paha i kekahi mau keiki hoʻokahi wale nō o kēia mau maʻi, aʻo kekahi poʻe he nui paha o kēia mau maʻi i hui pū ʻia.

He mea maʻamau anei kēia kūlana?

ʻAʻole, he maʻi laha ʻole ka Bladder Exstrophy. Hoʻokahi wale nō i loko o 50,000 mau pēpē hānau hou e hoʻopilikia ai.

He aha nā hōʻailona nui?

ʻO ka hōʻailona nui a maopopo loa, ʻo ia ka ʻōpū mimi e puka mai ana mai ka ʻōpū. Eia kekahi, hiki ke ʻike ʻia kekahi mau hōʻailona ʻē aʻe.

• Aia ka pihi ʻōpū ma lalo loa ma mua o ka maʻamau.
• ʻAʻole i pili nā iwi pubic , akā ua hoʻonoho ʻia ma kahi kaʻawale.
• Aia paha ka anus ma mua ma mua o ka maʻamau.
• I nā keikikāne , ʻaʻole paha i iho nā testicles i loko o ka scrotum (nā testicles i iho ʻole).
• Hiki i kekahi mau keiki ke loaʻa i nā hernias , e like me nā hernias inguinal a i ʻole nā ​​hernias umbilical.

He aha nā kumu a me nā kumu pilikia no kēia?

ʻAʻole ʻike ʻia ke kumu kikoʻī o kēia ʻano , akā manaʻoʻiʻo nā kauka he hui pū ʻana o nā kumu genetic a me ke kaiapuni e pāʻani i kahi kuleana. He mea nui e hoʻomaopopo ʻaʻohe hewa ma ka ʻaoʻao o nā mākua e hoʻokumu ai i kēia ʻano.

Eia kekahi o nā kumu pilikia i ʻike ʻia:

• Moʻolelo ʻohana: Inā loaʻa i kekahi o nā mākua kēia ʻano i kona wā kamaliʻi, he 1 i loko o 70 ka manawa e loaʻa ai i kā lāua keiki.
• Lāhui: Ua ʻike ʻia kēia ʻano he mea maʻamau i waena o ka poʻe keʻokeʻo.
• Kāne: ʻOi aku ka nui o nā keikikāne i kēia maʻi ma mua o nā kaikamahine ma mua o nā keikikāne.
• Nā lāʻau lapaʻau hānau keiki: Ke hōʻike nei kekahi mau noiʻi e hoʻonui iki paha ka hoʻohana ʻana i nā ʻano hana e like me ke kōkua ʻana i ka hana hou ʻana (IVF) i kēia pilikia.

Pehea ke ʻano o ka mālama ʻana a me ke ʻano o ka nānā ʻana?

Pono maoli ke ʻoki ʻana i kahi pēpē me ka Bladder Exstrophy. ʻO kēia wale nō ka lāʻau lapaʻau. Ma muli o ke koʻikoʻi o ke kūlana o ka pēpē, hiki ke hoʻoponopono piha ʻia ke kūlana me hoʻokahi a ʻoi aku paha nā ʻoki ʻana.

ʻElua mau ala maʻamau e hana ʻia ai ke ʻoki kino:

1. ʻOki hoʻokahi: I kekahi mau hihia, ua pani ʻia ka ʻōpū a hoʻoponopono ʻia ka urethra i hoʻokahi ʻoki ʻana i hana ʻia i loko o nā mahina mua ma hope o ka hānau ʻana o ka pēpē.

2. ʻO ke ʻoki kino ʻekolu-kahua: ʻO kēia ke ʻano hana i hana pinepine ʻia.

• Kahua mua (postpartum): I loko o kekahi mau lā o ka hānau ʻana, ua waiho ʻia ka ʻōpū mimi o ke pēpē i loko o ke kino a ua pani ʻia ka ʻōpū. I ka manawa like, hana ʻia kahi ʻoki (`osteotomy`) e hoʻohui i nā iwi pelvic, kahi mamao loa.
• Pae 2 (ma kahi o 6 mahina): Hana hou kēia ʻoki kino (hoʻoponopono epispadias) i nā ʻōpū hānau a me ka urethra.
• Pae 3 (ma kahi o 4-5 mau makahiki): I kēia manawa, ua hiki ke keiki i ka makahiki o ke aʻo ʻana i ka lua. Hana ʻia kēia ʻoki kino ('augmentation cystoplasty') e hoʻonui i ka ʻōpū mimi e paʻa ai ka mimi.

Nā pilikia lōʻihi e hiki mai ana

ʻOiai ma hope o ka lāʻau lapaʻau, hiki i kekahi mau keiki ke loaʻa i nā pilikia o ka ʻōpū mimi a i ʻole nā ​​​​puʻupaʻa.

• Ka maʻi puʻupaʻa (pyelonephritis)
• Nā pōhaku puʻupaʻa
• ʻOi aku ka kiʻekiʻe o ka pilikia o ka loaʻa ʻana o ka maʻi ʻōpū mimi ma hope o ke ola.
• Nā pilikia e pili ana i ka hana moekolohe.

Ua manaʻo ʻia nā wāhine me kēia maʻi he hāpai pilikia kiʻekiʻe ko lākou , a koi pinepine lākou i ka ʻoki cesarean (C-section) e hānau ai i ka pēpē. Pono paha nā kāne i nā ʻano hana hānau kōkua e like me ka in vitro fertilization (IVF) e loaʻa ai nā keiki.

Pehea kou manaʻo ma ke ʻano he makua

He mea paʻakikī i kekahi makua ke ʻike he maʻi hānau ʻia kāu keiki. Hiki iā ʻoe ke makaʻu, hopohopo, a me ka hewa. He mea maʻamau kēia mau manaʻo a pau.

Akā e hoʻomanaʻo, ʻaʻole kēia kou hewa . ʻAʻole hiki i nā kauka ke ʻōlelo maopopo i ke kumu o ka Bladder Exstrophy. E hāʻawi iā ʻoe iho i kahi manawa e hoʻomaopopo ai a hoʻololi i kēia kūlana. He kūpono loa nā lāʻau lapaʻau. ʻAʻole e pale kēia kūlana i kāu keiki mai ka loaʻa ʻana o kahi wā kamaliʻi maʻamau. Hoʻomaopopo maikaʻi nā kauka i kou mau manaʻo. Aia lākou ma laila e kākoʻo a aʻo iā ʻoe i kēlā me kēia ʻanuʻu o ke ala. No laila, mai makaʻu e kamaʻilio me kāu kauka e pili ana i nā mea āpau.