ʻO Ianuali ka Mahina Hoʻomaopopo ʻo Tracheoesophageal Fistula/Esophageal Atresia (TEF/EA).
ʻO ka esophagus ka paipu e hoʻopili ai i ka ʻāʻī i ka ʻōpū. ʻO ka trachea ka paipu e hoʻopili ai i ka ʻāʻī me ka paipu makani a me nā akemāmā. I ka hoʻomaka mua ʻana, hoʻomaka lākou ma ke ʻano he paipu hoʻokahi e māhele maʻamau i ʻelua paipu (ma kahi o ʻehā a ʻewalu mau pule ma hope o ka hāpai ʻana) e holo like ana ma ka ʻāʻī. Inā ʻaʻole kūpono kēia, ʻo TEF/EA ka hopena.
No laila, he aha ka tracheoesophageal fistula/esophageal atresia?
ʻO ka tracheoesophageal fistula (TEF) ka wā e pili ana ma waena o ka esophagus a me ka trachea. Loaʻa pinepine ka TEF me ka esophageal atresia (EA) ʻo ia hoʻi ʻaʻole i hana pololei ka esophagus i ka wā hāpai. Loaʻa ka TEF/EA ma 1 i 3,000 a 5,000 hānau. Loaʻa wale ia ma kahi o 40% o ka poʻe i hoʻopilikia ʻia, a ma ke koena o nā hihia e hana ʻia me nā kīnā hānau ʻē aʻe a i ʻole he ʻāpana o ka genetic syndrome. ʻO TEF/EA he mea weliweli i ke ola a pono e ʻoki ʻia e hoʻoponopono i ka hemahema.
A hiki i Nowemapa 2019, ʻaʻole au i lohe i ka TEF/EA a hiki i kēlā manawa i koʻu hāpai ʻana, 32 mau pule, ua manaʻo wau e loaʻa ana iaʻu kahi hāpai olakino hou (ua hānau ʻia kaʻu keiki ʻo Henry 11/2015). Ma kaʻu hana maʻamau he 32 pule, ua ʻike ʻia kaʻu OB-GYN me ka polyhydramnios, ʻo ia ka nui o ka wai amniotic i loko o ka ʻōpū (ua nānā pono lākou i koʻu mau wai mai koʻu manawa 30 pule), a ua haʻi koke ʻia i kahi loea. Ma waho aʻe o ka nui o ka wai, ua liʻiliʻi ka ʻōpū o kaʻu kaikamahine ma mua o ka maʻamau ma ka scan. ʻAʻole hiki ke ʻike ʻia ʻo TEF/EA ma mua o ka hānau ʻana akā no ka hoʻonui ʻana i kaʻu wai amniotic a me ka ʻōpū ʻōpū liʻiliʻi, ua lawa nā hōʻike e hōʻike ai ʻo ia paha ka hihia. Ma waena o nā koho kūikawā, e hoʻololi ana i kaʻu mālama mai kaʻu OB-GYN hilinaʻi i kahi hui o nā kauka ma kahi haukapila hou, e kūkākūkā ana i nā hiʻohiʻona maikaʻi a maikaʻi loa me kahi hōʻailona TEF / EA i hoʻopaʻa ʻia a hui pū me ke kauka lapaʻau kaulana i hana ʻia. kaʻu kaikamahine hoʻopakele ola ikaika pono, ua like wau me ke kanikau i ka manaʻo o ka lawe ʻana i ka home i kahi pēpē olakino (ʻo ia ka lā i manaʻo ʻia ʻo Ianuali 2, 2020) a ke hoʻāʻo nei e noho maikaʻi - no ka mea ʻaʻole i hōʻoia ʻia ka maʻi a hiki ke ola maikaʻi.
I mea e maʻalahi ai koʻu hopohopo, ua hoʻolālā mākou i kahi hoʻokomo i hoʻonohonoho ʻia ma nā pule he 38 e pale aku ai i nā lā Kalikimaka a me nā makahiki hou e hōʻoia i ke kaukaʻi aʻu i makemake ai e hana i kāna hoʻoponopono TEF/EA ma ke kelepona a ʻaʻole e hele i ka hoʻomaha. He aha kēlā ʻōlelo e pili ana i nā hoʻolālā maikaʻi loa? Eia nō naʻe, ua komo ʻo Romy Louise Ottrix i kona komo ʻana i ka honua i ʻelima mau pule ma mua o Nowemapa 29, 2019 - ka lā ma hope o ka Thanksgiving - kahi hoʻomaha hou, ʻo ia hoʻi, ʻaʻole e loaʻa kā mākou kauka lapaʻau lima a mākou i hilinaʻi ai e hana i kāna ʻoki. Ma hope o kekahi mau manawa pōkole o ka ʻili i ka ʻili, ua hoʻokaʻawale nā kauka iā Romy e kau i kahi ākea ma lalo o kona ʻāʻī - ua hoʻopaʻa ʻia kāna TEF / EA ma laila i loko o ka lumi hānau - he ʻeke liʻiliʻi kona esophagus, he mau kenimika wale nō ka hohonu. Ma hope mai, ua hōʻoia ka pahu X-ray ua pili ʻo ia mai kona trachea i kona ʻōpū.
Ua hoʻonohonoho ʻia kāna kaʻina hana no ke kakahiaka aʻe, kahi ʻokiʻoki ʻekolu hola i pau i ʻeono mau hola. Ma hope o ka ʻoki ʻana, ua ʻike mākou iā ia i loko o ka neonatal intensive care unit (NICU) kahi i hoʻomaha ʻia ai ʻo ia no nā lā ʻehiku e hiki mai ana, ʻaʻole hiki iā mākou ke hoʻoneʻe a paʻa iā ia. ʻO ia ka lōʻihi o nā lā ʻehiku o koʻu ola ʻana. Mai laila mai, ua loaʻa iā mākou ka huakaʻi e hoʻi i ko mākou home Romy maikaʻi. Ua ʻike nā kauka i kahi fistula ʻē aʻe ma waena o kāna esophagus a me ka trachea - ua haʻi ʻia iā mākou ma hope e kaʻana like ana i kahi pā hale - e hoʻonui ai i nā fistula. Ua hana ʻia kēia fistula i mea palekana ʻole iā ia ke hānai ʻia e ka waha. No ka hoʻi koke ʻana iā ia i ka home, ua kau nā kauka i kahi ʻōpū gastrostomy (g-tube) e lawe pololei i kāna meaʻai a me nā wai i kona ʻōpū. No nā mahina he 18 e hiki mai ana, ua hānai au iā Romy ʻehā a ʻelima mau manawa i ka lā ma o kāna g-tube. E like me kāu e noʻonoʻo ai, ua hoʻopau nui kēia i ka manawa a ma muli o kēlā, kaawale. Ma hope o ʻehiku kaʻina hana e pani ai i ka fistula congenital, ua hāʻawi ʻia iā mākou ka maikaʻi e hānai iā Romy ma ka waha. Ua ho'āʻo ʻo ia i nā mea āpau a me nā mea a pau i waiho ʻia i mua ona .
Ua hoʻolauleʻa wale mākou i ka makahiki ʻelua o Romy i ka hoʻi ʻana mai i ka home mai ka NICU, kahi āna i noho ai i ʻewalu mau pule lōʻihi. I kēia lā, he ʻelua makahiki olakino olakino ʻo ia, aia ʻo ia i ka 71st percentile no ke kaumaha a ʻo ka 98th percentile no ke kiʻekiʻe - ʻoi aku ma mua o nā manaʻo āpau o kāna mau kauka nāna i ʻōlelo ʻo ia e "hiki ʻole ke ulu" a i ʻole ka mea liʻiliʻi mau. . I kēia lā, ua loaʻa iā ia ma mua o 10 mau ʻokiʻoki a makemake hou ʻo ia i kona ulu ʻana. He mea maʻamau ka ʻike ʻana o nā pēpē TEF/EA i ka hōʻemi ʻana o ko lākou esophagus ma ke kahua hoʻoponopono mua, e koi ana i nā dilations i ʻole e paʻa ka meaʻai.
No laila no ke aha mākou e hoʻonui ai i ka ʻike? No ka mea, ʻaʻole i lohe ka poʻe he nui no TEF/EA, ke ʻole ʻoe e ʻike i kahi kanaka i ʻike pono iā ia; ʻaʻole like me nā hemahema hānau ʻē aʻe, ʻaʻole nui ke kākoʻo. ʻAʻole ʻike ʻia ke kumu, i kēia manawa ke manaʻoʻiʻo ʻia ʻo ia ke kumu o ka hui ʻana o nā ʻano genetic a me nā kaiapuni. Nui nā pēpē me TEF/EA e ʻike i nā pilikia e hoʻomau nei ma hope o kā lākou ʻoki ʻana mua, a ʻo kekahi i ko lākou ola ʻana. ʻO kēia mau mea e pili ana i ka reflux acid, floppy esophagus, ka hiki ʻole ke ulu, ka ʻāʻī ʻāʻī, nā ala ea i hoʻopaʻa ʻia, ka manaʻo leo, a me nā mea ʻē aʻe.
ʻO nā wehewehe a me nā helu TEF/EA i huki ʻia mai:
https://medlineplus.gov/genetics/condition/esophageal-atresia-tracheoesophageal-fistula/