Ke nānā ʻoe i kāu pēpē hānau hou, ua ʻike anei ʻoe ua ʻāwili ʻia ka ʻili ma kona ʻōpū e like me ka prune? A i ʻole ke ʻano nui loa o kona ʻōpū? He mea maʻamau no kekahi makuahine a makuakāne paha ke makaʻu i ka ʻike ʻana i kēia mau mea. Akā he hōʻailona paha kēia o kahi maʻi laha ʻole i kapa ʻia ʻo Prune Belly Syndrome. Mai hopohopo, e kamaʻilio mākou e pili ana i nā mea āpau me ka maopopo a me ka maʻalahi.
He aha ka Prune Belly Syndrome?
I ka ʻōlelo maʻalahi, he maʻi laha ʻole ka Prune Belly Syndrome i loaʻa i ka wā hānau (congenital). Loaʻa ka inoa mai ka ʻoiaʻiʻo he ʻano wrinkled ka ʻili ma ka ʻōpū o kēia mau keiki a like me ka prune. Hoʻokumu ʻia kēia e ʻekolu mau kumu nui.
1. Nā ʻiʻo ʻōpū nāwaliwali a ʻaʻohe paha: ʻAʻole i ulu piha nā ʻiʻo ʻōpū o ke pēpē, ʻo ia ke kumu e ʻike ʻia ai ka ʻili ma ka ʻōpū he palupalu a he ʻāwili.
2. Nā testicles i iho ʻole: I nā keikikāne, ʻaʻole i iho nā testicles mai ke kino a i loko o ka scrotum kahi e pono ai lākou.
3. Nā pilikia o ka ʻōnaehana mimi: Aia nā pilikia me ke ʻano o ka hana ʻana o ka ʻōnaehana mimi o ka pēpē, ʻo ia hoʻi, nā puʻupaʻa a me ka ʻōpū mimi.
Ma waho aʻe o kēia mau pilikia nui ʻekolu, hiki i kēia maʻi ke hoʻopilikia i nā ʻāpana ʻē aʻe o ke kino o ka pēpē. No ka laʻana, hiki ke hoʻopilikia ʻia ka puʻuwai, nā māmā, nā ʻōpū, a me ka ʻōnaehana iwi. Ua kapa ʻia kēia ʻo Triad Syndrome a i ʻole Eagle-Barrett Syndrome.
Pehea ka maʻamau o kēia ʻano?
He maʻi laha ʻole kēia. Hoʻopilikia ia ma kahi o hoʻokahi i loko o 30,000 a 40,000 mau pēpē hānau hou. ʻO ka mea kupanaha loa, ʻo 95% o nā hihia o kēia maʻi i hōʻike ʻia i nā keikikāne .
He aha nā hōʻailona nui o kēia maʻi?
Aia ma mua o 50 mau hōʻailona o ka Prune Belly Syndrome. Eia nō naʻe, hiki ke ʻokoʻa kēia mau hōʻailona mai kekahi pēpē a i kekahi. E nānā kāu kauka i kāu pēpē a hana i nā hoʻokolohua e pono ai e hōʻoia i ke kūlana.
E nānā kākou i kekahi o nā hiʻohiʻona nui i ʻike pinepine ʻia.
| Hōʻailona | He wehewehe maʻalahi |
|---|---|
| Ka ʻūlū ʻana o ka ʻili o ka ʻōpū | Ke nānā aku nei ka ʻili ua maloʻo a ʻāwili ʻia ma muli o ka nāwaliwali a ʻaʻohe paha o nā ʻiʻo o ka ʻōpū. |
| ʻŌpū nui | No ka mea, he lahilahi ka ʻili ma ka ʻōpū, hiki ke ʻike ʻia nā mea e like me nā ʻōpū i loko. ʻIke ʻia ka ʻōpū he nui aʻe. |
| Nā testicles i iho ʻole | I nā keikikāne, ʻaʻole i iho nā testicles i loko o ka scrotum kahi e pono ai lākou (nā testicles i iho ʻole) . |
| Nā pilikia o ka ʻōnaehana mimi | Nā pilikia e like me ke ālai ʻana o ke ala mimi, ka hoʻonui ʻia ʻana o nā puʻupaʻa a i ʻole ka ʻōpū mimi, a me ka reflux vesicoureteral . |
| Nā pilikia kino ʻē aʻe | Hiki ke ʻike ʻia nā pilikia o ka ʻōnaehana hoʻoheheʻe, nā pilikia o ka puʻuwai, ka scoliosis , a me ka wāwae kalapu . |
No ke aha lā kēia e hana nei? He aha ke kumu?
ʻAʻole i loaʻa i nā kānaka noiʻi ke kumu o kēia, akā aia kekahi mau manaʻo e hōʻike ana he kumu paha ia.
- Nā pilikia o ka ʻōpū mimi: Manaʻo kekahi poʻe ua hana ʻia kēia ʻano ma muli o kahi ʻano ʻē i loko o ka ʻōpū mimi e ulu ana i ka wā e ulu ana ka pēpē i loko o ka ʻōpū. ʻAʻole hiki ke kahe pono ka mimi a hōʻiliʻili ʻia, e hoʻoulu ai i ka ʻōpū mimi, nā ureters, a me nā puʻupaʻa e pehu. I ka ulu ʻana o ka ʻōpū mimi, kau ia i ke kaomi ma luna o nā ʻiʻo o ka ʻōpū, e hoʻoulu ai iā lākou i ka atrophy.
- Pilikia ka ulu ʻana o nā ʻiʻo: Manaʻo kekahi poʻe ʻo ke kumu nui ʻaʻole e ulu pono ana nā ʻiʻo o ka ʻōpū o ka pēpē.
- Nā Kumu Hoʻoilina: Ua manaʻoʻiʻo ʻia he mana hoʻoilina ko kēia maʻi, e like me ka mea i ʻike ʻia i nā kaikaina. ʻIke ʻia ka Prune Belly Syndrome i nā keiki me nā maʻi hoʻoilina e like me Trisomy 18 (Edwards syndrome) a me Down syndrome (Trisomy 21).
He aha nā pilikia e hiki ke hana ma muli o kēia ʻano?
Nui nā hopena ʻaoʻao a me nā pilikia e hele mai me ka Prune Belly Syndrome. He ʻokoʻa ia mai kēlā pēpē a i kēia pēpē. ʻO kēia nā pilikia nui e ʻike ʻia.
- Paʻa ʻōpū: Paʻakikī i ka hele ʻana i ka ʻōpū ma muli o ka nāwaliwali o nā ʻiʻo o ka ʻōpū.
- Nā kīnā o ka iwi: nā mea e like me ke kuʻe ʻana o ka ʻūhā, nā lima i nalowale, nā manamana lima, a i ʻole nā manamana wāwae.
- Nā maʻi ʻōpū mimi: Loaʻa pinepine nā maʻi ʻōpū mimi (UTI).
- ʻO ka hānau ʻole a i ʻole ke kanesa: ʻO ka hiki ʻole ke iho i lalo i nā testicles e alakaʻi i ka hānau ʻole a i ʻole ka pilikia o ka maʻi kanesa i ka wā e hiki mai ana.
- Hoʻemi ʻia ka ulu ʻana o ka māmā: ʻAʻole ulu pono nā māmā (pulmonary hypoplasia).
- ʻO ka hāʻule ʻana o nā puʻupaʻa mau loa: ʻO kēia ka pilikia koʻikoʻi loa.
Pehea e ʻike ai i kēia maʻi?
I ka hapanui o nā hihia, hiki ke ʻike mua ʻia kēia kūlana i ka wā o kahi scan (ultrasound fetal) āu e hana ai i kou wā hāpai. Hiki i ke scan ke ʻike i ke kauka i ka pēpē:
- Nā ʻano ʻino o ka iwi a i ʻole nā ʻiʻo
- Nā pilikia o ka puʻuwai
- Ka ulu ʻana o ka māmā haʻahaʻa
- Nā pilikia o ka ʻōnaehana hoʻoheheʻe
- Ua pehu ka ʻōpū mimi.
- Ua hoʻonui ʻia nā puʻupaʻa.
Ma hope o ka hānau ʻana o ka pēpē, hiki i ke kauka ke kānalua ua loaʻa i ka pēpē kēia maʻi ma ka nānā wale ʻana iā ia. No ka hōʻoia ʻana i kēlā kānalua, hiki ke hana ʻia kekahi mau hoʻokolohua, e like me:
- Nā hoʻāʻo koko
- ʻO ke kiʻi ʻana o ka ultrasound
- X-ray
- Nānā CT
- Nānā MRI
- ʻO ka Voiding cystourethrogram (VCUG) - Pili kēia i ka hoʻokomo ʻana i kahi wai kūikawā i loko o ka ʻōpū mimi a me ka lawe ʻana i nā kukuna X i ka wā e mimi ana ke pēpē e nānā i ka hana o ka ʻōnaehana mimi.
Pehea e mālama ʻia ai?
ʻOkoʻa ke ʻano o ka mālama ʻana i kēia mai kēlā keiki a kēia keiki. E hana pū kahi hui o nā loea e hoʻomohala i ka hoʻolālā mālama kūpono loa no ke keiki. E noʻonoʻo kēia i nā kumu he nui, me ka makahiki o ke keiki, ke kūlana olakino, ke koʻikoʻi o ke kūlana, a me nā makemake o nā mākua.
- Nā hihia ʻoluʻolu: ʻO kekahi mau keiki i ʻike ʻole ʻia ko lākou mau hōʻailona i ka ʻino e pōmaikaʻi paha mai nā lāʻau antibiotics wale nō e pale a mālama paha i nā maʻi ʻōpū mimi.
- ʻO ke ʻoki kino: Eia nō naʻe, e pono ana nā keiki he nui i nā ʻoki kino he nui e hoʻoponopono i ka paia ʻōpū, nā genitals, ka ʻōpū mimi, a me nā ʻāpana ʻē aʻe o ka ʻōnaehana urinary.
ʻO ka mea nui loa, ʻo ia ka hoʻoholo ʻia ʻana o kēlā me kēia o kēia mau lāʻau lapaʻau e kahi noiʻi piha ʻana i ke kūlana o ke keiki a he mea kūikawā ia i kēlā keiki.
Eia kekahi o nā ʻano hana nui i hana ʻia:
- Vesicostomy: Hana ʻia kahi puka liʻiliʻi ma o ka ʻōpū i loko o ka ʻōpū mimi, e ʻae ana i ka mimi e kahe ma loko.
- Orchiopexy: Hoʻohaʻahaʻa ʻia nā testicles mai ke kino mai a waiho ʻia i loko o ka scrotum.
- ʻO ke kāpili ʻana o ka ʻiʻo:He ʻoki kino paʻakikī e kūkulu hou ana i ka ʻōpū mimi.
I kekahi mau hihia koʻikoʻi, pono paha i ke keiki kahi hoʻoili puʻupaʻa .
Pehea lā ka wā e hiki mai ana o kēia mau keiki?
ʻO ke ola o kēia mau keiki e pili ana i ke koʻikoʻi o ka maʻi. ʻO ka mea kaumaha, ma waena o 10% a me 25% o nā keiki i hānau ʻia me kēia maʻi e make ana i loko o ka ʻōpū a make paha mai nā pilikia i loko o nā pule mua o ke ola.
Eia nō naʻe, ma kahi o 40% o nā keiki me Prune Belly Syndrome he hana maʻamau ko lākou a hiki ke ola i kahi ola maʻamau.
Pono kekahi 30% i kahi hoʻoili puʻupaʻa i kekahi manawa o ko lākou ola.
He mea nui ka nānā ʻana a me ka hahai ʻana i ke kauka no ke ola holoʻokoʻa no nā keiki me kēia maʻi. Hiki i kēia ke kōkua i ka nānā ʻana i nā pilikia o ka ʻōnaehana mimi a hōʻemi i ka hiki ke hōʻino ʻia nā puʻupaʻa.
He aha nā manawa kūpono loa e ʻike ai i ke kauka?
Loaʻa i nā keiki me ka Prune Belly Syndrome ka pilikia nui no nā maʻi ʻaʻai mimi (UTIs), no laila inā ʻike ʻoe i kekahi mau hōʻailona o ka maʻi ʻaʻai mimi, e kāhea koke aku i kāu kauka.
| Nā hōʻailona hōʻailona o ka maʻi ʻaʻai urinary | |
|---|---|
| Kuni a i ʻole ke anu | Pono pinepine e mimi |
| Ke manaʻo nei i ka makemake nui e mimi, akā he liʻiliʻi wale nō e puka mai ana | ʻEha a wela paha i ka wā e mimi ai |
| ʻEha o ka ʻōpū haʻahaʻa a i ʻole ke kua | Hoʻololi i ke kala o ka mimi (ʻeleʻele, murky) |
| He ʻala ikaika a pilau hoʻi mai ka mimi | Koko i loko o ka mimi |
Eia kekahi, e ʻimi i ke kōkua lapaʻau inā loaʻa i kāu keiki kekahi pilikia ʻē aʻe i ka mimi ʻana a i ʻole e hōʻike ana i kekahi mau hōʻailona ʻē aʻe. He mea nui loa hoʻi e lawe i kāu keiki no kahi nānā lapaʻau ma ka liʻiliʻi hoʻokahi manawa i ka makahiki .
Hiki ke paʻakikī ka mālama ʻana i kahi pēpē i hānau ʻia me kēia maʻi. Akā e hoʻomanaʻo, ʻaʻole ʻoe hoʻokahi. ʻO ka hana ʻana me ke kauka a me kahi hui o nā loea i ʻike i kēia maʻi hiki ke hāʻawi iā ʻoe a me kāu pēpē i ka ikaika a me ke alakaʻi a lākou e pono ai.
Leka Lawe-Home
- He maʻi laha ʻole ka Prune Belly Syndrome i ka wā hānau.
- ʻO nā hōʻailona nui ka ʻāʻī ʻana o ka ʻili ma ka ʻōpū, nā testicles i iho ʻole i lalo i nā keikikāne, a me nā pilikia o ka ʻōnaehana mimi.
- Hiki ke ʻike mua ʻia kēia ʻano ma o nā scan i ka wā hāpai.
- ʻOkoʻa nā ʻano lapaʻau ma muli o ke kūlana o ke keiki, a koi pinepine ʻia nā ʻoki kino he nui.
- He mea weliweli loa nā maʻi ʻaʻai mimi no kēia mau keiki. No laila e makaʻala mau iā lākou. E ʻike i ke kauka i ka wā e ʻike ai ʻoe i ka hōʻailona liʻiliʻi loa.
- He mea pono i ke keiki ka nānā pono ʻana a me ka mālama ʻana i ke olakino no kona ola a pau .
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