Ua nānā anei ʻoe i ka ʻōpū o kāu pēpē hānau hou a ʻike ʻoe ua ʻāwili loa kona ʻili, e like me ka hua maloʻo? A i ʻole ua nāwaliwali loa ia a ʻaʻohe ʻiʻo? He mea maʻamau iā ʻoe ke makaʻu ma ke ʻano he makuahine ke ʻike ʻoe i nā mea e like me kēia. Akā he hōʻailona paha kēia o kahi kīnā hānau kakaikahi akā koʻikoʻi i kapa ʻia ʻo Prune Belly Syndrome. I kēia lā, e kamaʻilio mākou e pili ana i kēia ma ke ʻano maʻalahi e hiki ai iā ʻoe ke hoʻomaopopo.
He aha ka Prune Belly Syndrome?
I ka ʻōlelo maʻalahi, he maʻi laha ʻole ka Prune Belly Syndrome i ka wā hānau. Ua kapa ʻia hoʻi ʻo ia ʻo Eagle-Barrett syndrome. ʻO "Prune" kahi hua e like me ka hua waina maloʻo a plum paha. Loaʻa ka inoa mai ka ʻoiaʻiʻo he ʻano ʻūlū kēia mau keiki ma ko lākou ʻōpū.
ʻEkolu mau hōʻailona nui o kēia maʻi, ʻo ia ke kumu i kapa ʻia ai i kekahi manawa ʻo "triad syndrome."
1. ʻAʻohe a nāwaliwali loa paha nā ʻiʻo ʻōpū: ʻO kēia ka hōʻailona nui o waho. ʻAʻole i ulu pono nā ʻiʻo ʻōpū, ʻo ia ke kumu e ʻike ʻia ai ka ʻili ma ka ʻōpū he palupalu a he ʻāwili.
2. Nā testicles i iho ʻole: Hoʻopilikia nui kēia maʻi i nā keikikāne. Noho ko lākou mau testicles i loko o ka ʻōpū, ma kahi o ka iho ʻana i loko o ka scrotum.
3. He ʻano nui ʻole o ka mimi a me nā pilikia o ka ʻōnaehana mimi: ʻO kēia ka pilikia koʻikoʻi loa o kēia maʻi. Lilo ka mimi i mea nui loa, e hoʻoulu ai i nā pilikia koʻikoʻi me ka ʻōnaehana mimi.
ʻO kēia mau pilikia o ka ʻōnaehana mimi e pale aku ai i ke keiki mai ka hoʻokahe loa ʻana i kā lākou ʻōpū mimi, nā puʻupaʻa, a me nā ʻōmole e lawe ana i ka mimi mai nā puʻupaʻa a i ka ʻōpū mimi (ureters).
Inā hānau ʻia ke keiki me kēia maʻi, loaʻa paha iā lākou nā ʻano ʻē i loko o ke ala mimi. No ka laʻana, hiki i ka urethra ke ākea loa, hiki i ka mimi ke hōʻiliʻili a piha, a hiki i ka mimi ke kahe i hope i nā puʻupaʻa (backflow).
Hiki i ka Prune Belly Syndrome ke hana i nā kīnā hānau ʻē aʻe. ʻO kēia mau mea e komo pū me nā kīnā i loko o nā māmā, ka puʻuwai, nā ʻōpū, a me ka ʻōnaehana iwi. ʻOiai hiki ʻole ke hoʻopilikia pinepine kēia maʻi i nā kaikamahine, 95% o nā hihia i hōʻike ʻia i nā keikikāne.
No ke aha lā kēia e hana nei? He aha nā kumu?
ʻO ka ʻoiaʻiʻo, ʻaʻole i loaʻa i nā kauka kahi kumu kūpono no ka Prune Belly Syndrome, akā aia kekahi mau manaʻo e hōʻike ana he kumu paha ia.
- Manaʻo mua:I ka ulu ʻana o ke pēpē i loko o ka ʻōpū, ua manaʻo ʻia aia kahi paʻa i loko o ka ʻōpū mimi a i ʻole ka urethra. Pale kēia i ka mimi mai ka haʻalele ʻana i ke kino, e hoʻonui ai i ka ʻōpū mimi, nā ureters, a me nā puʻupaʻa. Ke nui loa ka ʻōpū mimi, pale ke kaomi i hana ʻia e nā ʻiʻo ʻōpū mai ka ulu ʻana a me ka iho ʻana o nā testicles.
- Manaʻo lua: No ka mea, ʻaʻole e ulu pono ana nā ʻiʻo o ka ʻōpū, he mea paʻakikī i ke keiki ke mimi. Hoʻoulu kēia i ka pehu ʻana o ka ʻōnaehana mimi, e hoʻoulu ai i nā maʻi a me nā pilikia.
- Manaʻo ʻekolu: Malia paha he mea like kēia nāwaliwali o nā ʻiʻo a me nā pilikia o ka ʻōnaehana mimi, a aia paha kekahi kumu a mākou i ʻike ʻole ai (no ka laʻana, kahi kīnā i loko o ka ʻōnaehana nerve).
Ma muli o ka nui o nā hōʻike e pili ana i kēia ʻano e hana ʻia ana i nā kaikaina ma ka ʻohana hoʻokahi, ke hana ʻia nei hoʻi nā noiʻi e hoʻoholo ai inā he loulou genetic i kēia.
He aha nā hōʻailona o kēia maʻi?
Hiki ke ʻokoʻa ke ʻano a me ke koʻikoʻi o nā hōʻailona mai kekahi keiki a i kekahi keiki me ka Prune Belly Syndrome. Eia nō naʻe, aia kekahi mau hōʻailona maʻamau. E nānā i ka papa ma lalo.
| Hōʻailona | He wehewehe maʻalahi |
|---|---|
| ʻŌpū ʻūlū | He ʻano maloʻo a palupalu ka ʻili ma muli o ka nele o nā ʻiʻo i loko o ka ʻōpū. |
| ʻO ka pehu ʻana ma ka ʻōpū lalo | Me he mea lā ua pehu ka ʻōpū lalo ma muli o ka nui o ka ʻōpū mimi. |
| Ka puka ʻana o ka ʻōpū | ʻIke ʻia ke ʻano ʻoʻoleʻa o nā ʻōpū ma o ka ʻili ma muli o ka nāwaliwali o ka uhi ʻōpū. |
| Nā maʻi ʻōpū mimi pinepine (UTIs) | Nā maʻi pinepine ma muli o ka mimi pono ʻole. |
| Ka paʻakikī o ka noho ʻana a me ka hele ʻana | Ka paʻakikī ke kāohi ʻana i ke kino ma muli o ka nele o ka ikaika o ke kino. |
| Ka hoʻokahe ʻana o ka scrotum | ʻAʻole i loko o ka scrotum nā testicles o nā keiki kāne. |
Eia kekahi, loaʻa paha i kekahi mau keiki ka wāwae kalapu, kahi kūlana i hānau ʻia ai ka wāwae me ka wāwae i huli i loko, a me ka spina bifida , kahi kīnā hānau kahi i ulu pono ʻole ai nā aʻalolo o ka iwi kuamoʻo.
Pehea e ʻike ai i kēia maʻi?
I ka hapa nui o ka manawa, hiki i nā kauka ke ʻike i kēia kūlana i ka wā o kahi scan ultrasound i kou wā hāpai. Inā ʻaʻole, e ʻike maopopo ʻia kēia mau hōʻailona i ka wā o ka nānā mua ʻana o ke kauka ma hope o ka hānau ʻana o ka pēpē.
Hiki i kāu kauka ke hana i kekahi mau hoʻokolohua e hōʻoia i ka hōʻailona a hoʻoholo i ke koʻikoʻi pololei o ke kūlana.
- ʻO ke scan Ultrasound: Kōkua kēia i ka ʻike ʻana i ke kūlana o nā puʻupaʻa a me nā ʻōpū ʻē aʻe o ka ʻōnaehana mimi.
- Nā hoʻāʻo X-ray: ʻElua ʻano o nā X-ray e hoʻohana ana i kahi kala kūikawā e hoʻokomo ʻia i loko o ke kino. ʻO kekahi he intravenous pyelogram (IVP) a ʻo kekahi he voiding cystourethrogram (VCUG). Hiki i kēia mau mea ke hōʻike maopopo i nā ālai a me nā pilikia i loko o ka ʻōnaehana mimi.
- Nā hoʻāʻo koko: Kōkua kēia mau hoʻāʻo e hoʻoholo i ka hana maikaʻi o nā puʻupaʻa o kāu keiki.
He aha nā lāʻau lapaʻau?
Ma muli o ke ʻano like ʻole o nā hōʻailona a me ke koʻikoʻi o ka Prune Belly Syndrome, aia kekahi mau koho lapaʻau. E hoʻoholo ke kauka i ka lāʻau kūpono loa ma muli o ke kūlana o ke keiki. I ka manawa pinepine, pono nā ʻoki kino he nui.
| Inoa o ke ʻoki kino (Huaʻōlelo Pelekania) | I ka ʻōlelo maʻalahi, he aha ke ʻano o kēia? |
|---|---|
| ʻO ka Vesicostomy | Hana ʻia kahi puka liʻiliʻi ma o ka ʻōpū i loko o ka ʻōpū mimi, e ʻae ana i ka mimi e hele maʻalahi. |
| ʻOrchiopexy | Hoʻokomo ʻia nā testicles i loko o ka ʻōpū i loko o ka scrotum ma ke ʻoki ʻana a hoʻopaʻa ʻia. |
| ʻO ke kāpili ʻana o ka cystoplasty | He hana ʻoki kēia e kūkulu hou ai a hana hou paha i ka ʻōpū mimi. |
| Hoʻonui ʻia ʻo Detrusor | He ʻoki kino e hoʻoikaika i nā ʻiʻo o ka ʻōpū mimi. I kekahi manawa, hiki ke hoʻohana ʻia kekahi hapa o ka ʻiʻo mai ka ʻaoʻao o ka ʻūhā. |
| Hoʻoili puʻupaʻa | I nā hihia koʻikoʻi loa, inā hāʻule nā pūnaʻau, pono paha i ke keiki kahi hoʻoili puʻupaʻa. |
Pehea lā ke ʻano o ke keiki i ka wā e hiki mai ana? (Wānana)
He mea paʻakikī ke hāʻawi i hoʻokahi pane i kēia nīnau, no ka mea, ʻo ka wā e hiki mai ana o ke keiki e pili ana i ke koʻikoʻi o ka maʻi, ka makahiki o ke keiki, a me ko lākou olakino holoʻokoʻa.
Aia kekahi mau hihia kahi e make ai kekahi mau keiki i loko o ka ʻōpū (hānau make). Hiki i kekahi mau keiki ke make i loko o kekahi mau mahina o ka hānau ʻana. He mea koʻikoʻi loa kēia.
Eia nō naʻe, me ka mālama ʻia ʻana, hiki i kekahi mau keiki ke loaʻa i ka hāʻule ʻana o nā puʻupaʻa . ʻO ka hāʻule ʻana o nā puʻupaʻa ka wā e nalowale ai nā puʻupaʻa ma kahi o 85-90% o kā lākou hana, a hiki i kahi i hiki ʻole ai iā lākou ke hana pono. A laila, hōʻiliʻili nā huahana ʻōpala a me ka wai keu i loko o ke kino, e hoʻomaʻi nui ai ke keiki. ʻO nā hōʻailona e pili ana i ka luhi, ka nalowale o ka makemake, ka maneʻo, a me nā wāwae pehu.
Inā hāʻule nā puʻupaʻa, ʻo ka dialysis a i ʻole ka hoʻoili ʻana o ka puʻupaʻa ka lāʻau lapaʻau.
ʻO ka mea hope loa, inā he kānalua iki kou e hōʻike ana kāu pēpē i kekahi o kēia mau hōʻailona, e ʻike koke i ke kauka . ʻO ka ʻike mua ʻana a me ka hoʻomaka ʻana o ka lāʻau kūpono e alakaʻi i kahi hopena maikaʻi aʻe no kāu pēpē.
Leka Lawe-Home
- He maʻi hānau kakaikahi loa ka Prune Belly Syndrome e pili nui ana i nā keiki kāne.
- ʻO nā hōʻailona nui ʻekolu o kēia maʻi, ʻo ia ka ʻili ʻāwili ma ka ʻōpū, nā ʻiʻo nāwaliwali, a me nā pilikia o ka ʻōnaehana mimi.
- ʻOiai ʻaʻole i loaʻa ke kumu kikoʻī o kēia, ua manaʻoʻiʻo ʻia he hiki ke hana ʻia e kahi ālai ʻana i ka ʻōnaehana mimi i ka wā hāpai.
- Hiki ke ʻike ʻia kēia ma o nā scan i ka wā hāpai a ma hope paha o ka hānau ʻana o ke pēpē.
- Pono pinepine ke ʻoki ʻana ma ke ʻano he lāʻau lapaʻau. Inā koʻikoʻi ke kūlana, aia ka pilikia o ka hāʻule ʻana o nā puʻupaʻa.
- Inā loaʻa i kāu keiki kekahi o kēia mau hōʻailona, mai hoʻokaʻulua a e ʻike koke i kāu kauka . He mea nui loa ke kōkua mua.
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