He mea maʻamau ka hopohopo no nā mea liʻiliʻi a me ka hauʻoli o ka lawe ʻana mai i kahi keiki hānau hou i ka home, ʻeā? Hopohopo nui nā mākua i ka ʻai ʻana, ka inu ʻana, ka ʻauʻau ʻana, a me ka ʻōpala ʻana o kā lākou pēpē (kapa mākou he ' mimi '). No laila, inā ʻaʻole i ʻōpala kāu pēpē i ʻelua lā, a i ʻole ma kahi o 48 mau hola, a inā paha ua pehu a paʻakikī kona ʻōpū, he mea nui loa kēia iā ʻoe. I kēia lā, ke kamaʻilio nei mākou e pili ana i kahi maʻi i hānau ʻia ai kekahi mau pēpē i kapa ʻia ʻo ka Maʻi Hirschsprung.
He aha ka maʻi o Hirschsprung?
I ka ʻōlelo maʻalahi, ʻo ka Maʻi Hirschsprung kahi maʻi i hānau ʻia ai kāu pēpē (ʻo ia hoʻi, he maʻi hānau). Hoʻoulu ia i ka hele ʻana o ka ʻōpala i loko o kahi ʻāpana o ka ʻōpū nui o kāu pēpē (colon) e lohi a hoʻōki loa paha. I kekahi manawa kapa ʻia ia e nā kauka he "congenital megacolon."
E noʻonoʻo e pili ana i ia mea, i ka wā e ʻai ai kākou i ka meaʻai, pono e hoʻoheheʻe ʻia a hoʻokuʻu ʻia ma ke ʻano he ʻōpala. No ka hana pono ʻana o kēia kaʻina hana, pono nā ʻiʻo i loko o ko kākou ʻōpū e ʻūlū a hoʻomaha. Hōʻike ʻia kēia e nā hunaola nerve. I loko o kahi pēpē me ka maʻi Hirschsprung , ʻaʻole i hoʻomohala pono ʻia nā hunaola nerve ma ka hopena o ka ʻōpū nui, kokoke i ka anus. Ua kapa ʻia kēia mau hunaola nerve kūikawā he "neural crest cells."
No laila, ke hele ka ʻōpala ma o nā ʻōpū o ka pēpē a hiki i kahi i hana pono ʻole ai nā hunaola aʻalolo, ua ālai ʻia a ʻaʻole hiki ke hele ma waena. ʻO kēia ka manawa e kū mai ai ka paʻa ʻana o ka ʻōpū. Inā ʻaʻole mālama koke ʻia kēia ʻano, hiki iā ia ke alakaʻi i nā pilikia koʻikoʻi . No laila, he mea nui loa ka makaʻala i kēia.
Pehea ka maʻamau o kēia maʻi?
ʻAʻole maʻamau ka maʻi Hirschsprung. Hoʻopilikia ia i hoʻokahi i loko o 5,000 mau hānau ʻana . ʻEkolu a ʻehā paha manawa ʻoi aku ka maʻamau i nā keikikāne ma mua o nā kaikamahine.
He aha nā hōʻailona o kēia maʻi?
Hiki i kekahi mau pēpē ke loaʻa kahi ʻōpū paʻa i ka wā hānau ma muli o ka maʻi Hirschsprung. Inā ʻaʻole i neʻe kāu pēpē i loko o 48 mau hola o ka hānau ʻana , he hōʻailona nui paha ia o kēia maʻi. No laila he mea nui e makaʻala i ia mea.
ʻO nā hōʻailona ʻē aʻe e ʻike ʻia i nā pēpē hānau hou:
- Pehu ʻōpū: Manaʻo paha ka ʻōpū o ke pēpē ua piha i ke kinoea a paʻakikī paha ke pā aku.
- Paʻa ʻōpū: He paʻakikī loa ka holo ʻana o ka wai ʻauʻau, a i ʻole ʻaʻole ia e hele no kekahi mau lā.
- Ka Luaʻi ʻana: I kekahi manawa he melemele a ʻōmaʻomaʻo paha ka luaʻi.
- Ka maʻi pākī: Loaʻa paha i kekahi mau pēpē ka maʻi pākī ma kahi o ka paʻa ʻana o ka ʻōpū.
- Ka nalowale o ka makemake a me ka pohō kaumaha: ʻAʻole makemake paha ka pēpē e inu i ka waiū, no laila ʻaʻole paha e loaʻa pono kona kaumaha.
- Ka lohi o ka ulu ʻana.
Inā loaʻa i kāu pēpē kekahi a ʻoi aku paha o kēia mau hōʻailona, ʻoi aku ka maikaʻi o ka ʻimi koke ʻana i ke kōkua lapaʻau.
No ke aha e kū mai ai ka maʻi ʻo Hirschsprung?
I ka wā e noho ana kahi fetus i loko o ka ʻōpū, ulu kēlā mau pūnaewele neural crest a mākou i kamaʻilio ai ma mua mai luna o ka ʻōpū liʻiliʻi o ka pēpē a hiki i lalo i ka anus. Eia nō naʻe, i nā pēpē me ka maʻi Hirschsprung, oki kēia mau pūnaewele nerve i ka ulu ʻana ma kahi o ka ʻōpū nui. ʻAʻole maopopo i nā kauka ke kumu o kēia.
Eia nō naʻe, ma lalo o 20% o nā hihia, hiki ke ʻike ʻia kēia maʻi e hoʻoili ʻia mai kēlā hanauna a i kēia hanauna ma nā ʻohana. ʻO ke ʻano kēia he hiki ke kumu o ka hoʻololi ʻana o ka genetics .
He aha nā kumu pilikia no ka hoʻomohala ʻana i kēia maʻi?
Inā loaʻa i kekahi o ka ʻohana, e like me ka makua a i ʻole ke kaikaina, ka maʻi, aia kekahi pilikia e loaʻa pū i ka pēpē. Eia kekahi, ʻoi aku ka nui o ka pilikia o ka loaʻa ʻana o ka maʻi Hirschsprung i nā pēpē me kēia mau kūlana:
- Inā he maʻi puʻuwai hānau kou .
- Inā loaʻa iā ʻoe ka Down syndrome .
He aha nā pilikia e hiki mai ana o kēia maʻi?
Ma kahi o 40% o nā pēpē me ka maʻi Hirschsprung e loaʻa i kahi maʻi i kapa ʻia ʻo enterocolitis. ʻO kēia ke kumu o ka mumū a me ka maʻi o nā ʻōpū liʻiliʻi a me nā ʻōpū nui o ka pēpē. ʻOiai he akahai kēia i kekahi mau pēpē, hiki ke koʻikoʻi a hiki ke hoʻoweliweli i ke ola i nā poʻe ʻē aʻe. Inā ulu ka enterocolitis koʻikoʻi, hiki i ka pēpē ke loaʻa i ke kuni a loaʻa koke ka maʻi diarrhea koʻikoʻi.
He mea nui: Inā ʻaʻole mālama pono ʻia ka maʻi ʻo Hirschsprung, hiki iā ia ke alakaʻi i nā kūlana koʻikoʻi e hoʻoweliweli i ke ola e like me:
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* Ka ālai ʻana o ka ʻōpū nui: Ma kēia, ua pau loa ka neʻe ʻana o ka meaʻai ma o ka ʻōpū nui o ke pēpē.
* Megacolon ʻawahia: He ʻano laha ʻole kēia akā he mea hoʻoweliweli i ke ola. Lilo ka ʻōpū nui o ka pēpē i pehu nui a hoʻonui ʻia. ʻAʻole hiki i ke kinoea a me ka ʻōpala ke hele ma waena o ka ʻōpū pehu a paʻa. Hoʻonui kēia i ke kaomi i loko o ka ʻōpū, e ʻae ana i ka bacteria e komo i ke koko. Hiki i kēia ke alakaʻi i nā ʻano hoʻoweliweli i ke ola i kapa ʻia ʻo 'Enterocolitis' a me 'Sepsis'. I nā hihia koʻikoʻi, hiki ke loaʻa kahi lua ('perforation') i loko o ka ʻōpū.
ʻO nā pilikia ʻē aʻe e hiki ke ʻike ʻia:
- Nā neʻe pinepine ʻana o ka ʻōpū me ka makemake ʻole.
- Ka maʻi pākī.
- Kuni.
- Ka ʻai pono ʻole.
- Paʻa paʻa nui.
- Pehu ʻōpū.
- Ka luaʻi ʻana.
No laila, he mea nui loa e ʻimi i ke kōkua lapaʻau i ka wā e ʻike ai ʻoe i nā hōʻailona.
Pehea e ʻike ʻia ai ka maʻi o Hirschsprung?
Ke lawe ʻoe i kāu pēpē i ke kauka, ʻo ka mea mua āu e hana ai, ʻo ia ke hoʻopā i ka ʻōpū o ke pēpē. Nānā lākou no ka pehu ʻana, ka ʻeha, a me ka paʻa ʻana o ka ʻōpala. A laila, nānā lākou i ka rectum e ʻike inā he hōʻiliʻili ʻana o ka ʻōpala.
Eia kekahi, hiki i ke kauka ke hana i hoʻokahi a ʻoi aku paha o kēia mau hoʻokolohua:
- X-ray: Hiki ke hoʻohana ʻia kahi X-ray o ka ʻōpū e nānā ai i kahi ālai ʻana i loko o ka ʻōpū.
- ʻEnema hoʻohālikelike: Ma kēia, hoʻokomo ke kauka i kahi ʻōmole lahilahi i kapa ʻia he catheter ma o ka anus o ke pēpē. Hoʻouna ʻia kahi wai palekana i kapa ʻia ʻo contrast ma o ka ʻōmole i loko o ka ʻōpū. A laila, lawe ʻia kahi X-ray e ʻike pehea e neʻe ai ka wai ma o ka ʻōpū. Hiki i kēia ke kōkua i ka ʻike pono inā he poloka a i ʻole ka haiki ʻana i loko o ka ʻōpū.
- Biopsy: ʻO kēia ka hoʻāʻo koʻikoʻi loa e hōʻoia i ka hōʻailona. Hoʻohana ke kauka i kahi mea hana kūikawā e wehe i kahi ʻāpana liʻiliʻi o ka ʻiʻo mai ka hopena o ka ʻōpū nui o ka pēpē (rectum). A laila nānā kekahi pathologist i ka ʻiʻo ma lalo o kahi microscope e ʻike inā aia nā hunaola nerve a mākou i kamaʻilio ai. ʻAʻole ʻeha kēia hoʻāʻo no ka pēpē, a ʻaʻohe pono no ka anesthesia.
Pehea e mālama ʻia ai ka maʻi o Hirschsprung a pehea e pale aku ai?
ʻAʻohe lāʻau lapaʻau no ka maʻi Hirschsprung. Eia nō naʻe, hiki ke hoʻohana ʻia ke ʻoki kino e mālama pono ai i ke ʻano. ʻElua ʻano nui o ke ʻoki kino: kahi hana huki a me kahi ʻoki ostomy.
Kaʻina hana huki
ʻO kēia ke ʻoki kino maʻamau a maʻamau loa no ka maʻi Hirschsprung. Ma kēia ʻoki kino, wehe ke kauka ʻoki kino i ka ʻāpana o ka ʻōpū nui o ka pēpē i nele i nā hunaola nerve a hoʻopili pololei i ka ʻāpana olakino o ka ʻōpū i ka anus. Hiki ke hana ʻia kēia ʻoki kino ma ke ʻano laparoscopic (ma o kekahi mau ʻoki liʻiliʻi) a i ʻole ma ke ʻano maʻamau. Hoʻōla koke ka pēpē ma hope o kēia ʻoki kino.
ʻO ke ʻoki ʻana ostomy
Pono paha kekahi mau pēpē e hana i kahi ʻoki ostomy ma mua a i ʻole i ka manawa like me ke kaʻina hana huki. Hiki i kēia ke lilo i colostomy (kahi kaʻina hana no ka ʻōpū nui) a i ʻole ileostomy (kahi kaʻina hana no ka ʻōpū liʻiliʻi).
Ma kēia kaʻina hana, hoʻopili nā kauka ʻoki i kahi ʻāpana o ka ʻōpū nui a i ʻole ka ʻōpū liʻiliʻi i ka ʻili o ka ʻōpū o ka pēpē. Ma kahi o ka anus o ka pēpē, puka mai ka ʻōpala o ka pēpē ma o kahi puka i kapa ʻia ʻo `stoma`. Hoʻopili ʻia kahi `ʻeke ostomy` i ke kino o ka pēpē e hōʻiliʻili i ka ʻōpala. He manawa pōkole kēia. Ma hope mai, wehe ʻia ia ma kekahi hana ʻē aʻe, e hoʻopau ana i ke kaʻina hana `pull-through`.
Nā lāʻau lapaʻau hou aʻe
Ma waho aʻe o ke ʻoki kino, hiki ke kōkua kēia mau lāʻau lapaʻau:
- Ka mālama ʻana i ka ʻōpū: He ʻano hana e hoʻohana ai i nā lāʻau lapaʻau a me/a i ʻole nā enema e mālama i nā ʻano ʻōpū olakino i loko o kahi pēpē.
- Hoʻoulu ʻana o ke aʻalolo Sacral: Hoʻokomo kekahi kauka lapaʻau i kahi mea liʻiliʻi ma ke kua haʻahaʻa e kōkua i ka kaohi ʻana i ka ʻōpū a me ka ʻōpū mimi.
- Biofeedback: He ʻano hana lapaʻau kēia e aʻo mai iā mākou i nā ʻano like ʻole e kaohi ai i nā hana kino a mākou i ʻike ʻole ai, e like me nā neʻe ʻana o ka ʻōpū.
He aha nā pilikia a i ʻole nā hopena ʻaoʻao e hiki mai ana ma hope o ke ʻoki ʻana?
ʻO ka maʻamau, hoʻōla koke nā pēpē me ka maʻi Hirschsprung ma hope o ke "ʻoki ʻana." Eia naʻe, hiki i kekahi mau pēpē ke loaʻa i nā pilikia ma hope o ka hoʻōla ʻana:
- Ka hoʻōki ʻana i ka ʻōpū.
- Ka paʻa ʻana o ka ʻōpū.
- Ka maʻi ʻōpū (Enterocolitis).
Inā kū mai kēia mau pilikia, e kōkua ke kauka lapaʻau o kāu pēpē a me kahi gastroenterologist iā ʻoe e mālama iā lākou.
Pehea ka wikiwiki o ka ho'ōla ʻana o ke pēpē ma hope o ka lāʻau lapaʻau?
Inā holo pono nā mea a pau, e hoʻomaka ka pēpē e ʻoi aku ka maikaʻi i loko o kekahi mau lā o ke ʻoki ʻana. E hoʻomanaʻo, ʻoiai ʻaʻole hiki ke ho'ōla loa ʻia ka maʻi ʻo Hirschsprung, hiki i ke ʻoki ʻana ke hoʻokō i nā hopena holomua loa.
Pehea ke kūlana ma hope o ke ʻoki kino?
Ma hope o ke ʻoki ʻana, hiki i kekahi mau pēpē ke hoʻomau i ka paʻa ʻana o ka ʻōpū, ka hiki ʻole ke hoʻomoe i ka ʻōpū, a me nā maʻi ʻōpū. Eia nō naʻe, me ka nānā ʻana o ke kauka no ka manawa lōʻihi a me ka mālama pono ʻana, hiki i ka hapa nui o nā keiki ke ola i kahi ola maʻamau me ka ʻole o ka paʻa ʻana o ka ʻōpū a me ka pilikia o ka kaohi ʻana i ko lākou neʻe ʻana o ka ʻōpū.
Hiki iaʻu ke pale aku i ka maʻi ʻo Hirschsprung?
ʻO ka mea pōʻino, ʻaʻohe mea hiki ke pale aku i ka maʻi Hirschsprung. Inā loaʻa iā ʻoe ka maʻi, a inā paha ua loaʻa i kekahi o kou ʻohana, he manaʻo maikaʻi paha e ʻike i kahi kākāʻōlelo genetic ma mua o kou hoʻomaka ʻana i kahi ʻohana.
Pehea e hiki ai iaʻu ke kōkua i kaʻu keiki e hoʻoponopono i ka maʻi ʻo Hirschsprung?
Ma hope o ke ʻoki ʻana, aia kekahi mau lāʻau lapaʻau e hiki ke kōkua i kāu keiki e mālama i ke kūlana:
- Alakaʻi meaʻai: Hiki iā ʻoe ke ʻimi i ka ʻōlelo aʻo mai kahi meaʻai meaʻai e pili ana i nā meaʻai kūpono no kāu keiki a me nā mea e hana ai e pale aku i ka paʻa ʻana o ka ʻōpū.
- Mālama mau ʻia e nā loea a me nā kahu maʻi: He mea nui ka nānā ʻana e kahi gastroenterologist a me kahi kahu maʻi i hoʻomaʻamaʻa ʻia ma kēia ʻano.
- Biofeedback / hoʻoponopono hou ʻana i ka papahele pelvic: Kōkua kēia i ka hoʻomaikaʻi ʻana i ka kaohi ʻana i ka ʻōpū.
- Kākoʻo mai kahi loea noʻonoʻo a mea hana kaiaulu paha: Hiki i ke keiki a me ka ʻohana ke loaʻa ke kākoʻo noʻonoʻo e kōkua iā lākou e hoʻoponopono i kēia pilikia.
E kamaʻilio mau me nā kauka o kāu keiki. E kōkua lākou iā ʻoe e koho i ka meaʻai a me nā koho lapaʻau maikaʻi loa no kāu keiki.
Āhea wau e haʻi aku ai i ke kauka e pili ana i ka maʻi Hirschsprung o kaʻu pēpē?
Ma hope o ke ʻoki ʻana, ʻoiai i loko o ka makahiki mua, hiki i nā pēpē ke loaʻa i kahi maʻi ʻōpū (enterocolitis). Inā hōʻike kāu pēpē i kekahi o kēia mau hōʻailona, e haʻi koke i kāu kauka:
- Ke kahe koko ʻana o ka rectal.
- Ka maʻi pākī.
- Kuni.
- Pehu ʻōpū.
- Ka luaʻi ʻana.
E hoʻomanaʻo, ʻoiai ua hānau ʻia kāu pēpē me ka maʻi Hirschsprung, ʻaʻole ia he manaʻo ʻaʻole hiki iā ia ke ola i kahi ola hauʻoli a olakino. Hiki ke mālama ʻia ke ʻano me ke ʻoki kino. Eia nō naʻe, hiki i ka manawa ma mua o ke ʻoki kino ke lilo i mea kaumaha loa iā ʻoe. He mea maʻamau ke kaumaha a makaʻu i ka wā e hana ai me kahi pēpē hānau hou. E noi i kou ʻohana a me nā hoaaloha no ke kōkua. E ʻae iā lākou e kōkua me nā hana o ka hale a me ka kuke ʻana. A laila hiki iā ʻoe ke hoʻolilo i ka manawa me kāu pēpē a hoʻomaha iki.
Leka Lawe-Home
- ʻO ka maʻi ʻo Hirschsprung kahi kūlana i hānau ʻia ai kekahi mau pēpē, e pilikia ai ka hoʻokahe ʻana ma muli o ka ulu pono ʻole ʻana o nā hunaola aʻalolo i loko o ka ʻōpū nui.
- Inā loaʻa i kāu pēpē nā hōʻailona e like me ka ʻole o ka neʻe ʻana o ka ʻōpū, ka pehu ʻana, a i ʻole ka luaʻi ʻana i loko o 48 mau hola o ka hānau ʻana, e ʻike koke i ke kauka.
- Hiki ke hōʻoia i ka maʻi me ka biopsy.
- ʻO ke kaʻina hana huki ka lāʻau lapaʻau nui. I kekahi manawa hiki ke hana ʻia kahi ʻoki ostomy no kekahi manawa.
- Ma hope o ka mālama ʻana, hiki i ka hapa nui o nā pēpē ke ola maʻamau a olakino. Eia nō naʻe, pono ka hoʻomau ʻana o ka nānā ʻana o ke kauka.
- ʻAʻole ʻoe hoʻokahi ma kēia huakaʻi. E kiʻi i ke kākoʻo mai nā kauka a me ka ʻohana.
Ke makemake nei i kāu pēpē e ola koke!
👩🏽⚕️ Nā nīnau hou aku (FAQs)
💬 He pilikia maʻamau anei ka maʻi Hirschsprung e maloʻo ai ka ʻōpū o kahi pēpē?
ʻAʻole kēia he paʻa ʻōpū maʻamau, akā he 'maʻi hānau' weliweli loa. Ke ulu nei kahi pēpē i loko o ka ʻōpū, ʻaʻole i hoʻopili pono ʻia nā aʻalolo i ka ʻaoʻao haʻahaʻa o ka ʻōpū nui. No ka mea, ʻaʻohe aʻalolo, ʻaʻole hana kēlā ʻāpana o ka ʻōpū, no laila ʻaʻole hiki ke hoʻokuke ʻia i waho ka ʻōpala i hōʻiliʻili ʻia i loko o ka ʻōpū. I ka hopena, paʻa nā ʻōpala a pau i loko.
💬 Pehea ʻoe e ʻike ai inā loaʻa i kāu pēpē kēia maʻi ke hānau ʻia ʻo ia?
ʻO ka hōʻailona nui a me ka hōʻailona mua, ʻaʻole i hoʻopuka ka pēpē i ka ʻōpala ʻeleʻele mua (Meconium) i loko o nā hola 48 mua (2 lā) o ka hānau ʻana. Eia kekahi, ua nui loa ka ʻōpū o ka pēpē a ua pehu. Luaʻi ʻo ia me ka ʻole o ka inu ʻana i ka waiū, a i kekahi manawa he ʻōmaʻomaʻo paha ka luaʻi (Bile).
💬 He aha nā lāʻau lapaʻau no kēia?
He maʻi hānau kēia me ka ʻole o nā aʻalolo, no laila ʻaʻole hiki ke ho'ōla ʻia ma ka lawe ʻana i ka lāʻau lapaʻau! ʻO ka lāʻau lapaʻau hoʻopakele ola wale nō a koʻikoʻi loa no kēia he ʻoki liʻiliʻi e ke kauka ʻoki keiki ma ka haukapila e 'ʻoki a wehe i ka ʻāpana o ka ʻōpū i loaʻa ʻole nā aʻalolo a ʻaʻole hana' a hoʻohui i ke koena o ka ʻōpū maikaʻi i ka anus (kaʻina hana Pull-through).
ʻO ka maʻi Hirschsprung, ka maʻi Hirschsprung, ka paʻa ʻana o ka ʻōpū o ka pēpē, megacolon hānau, ʻoki ʻōpū, pediatrics, kaʻina hana huki, ostomy
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