UJanuwari yiNyanga yokuqwashisa nge-Tracheoesophageal Fistula/Esophageal Atresia (TEF/EA)
Umphimbo yishubhu elixhuma umphimbo nesisu. Uqhoqhoqho yishubhu elixhuma umphimbo noqhoqhoqho kanye namaphaphu. Lapho zikhula, ziqala njengeshubhu elilodwa elivame ukuhlukana libe amashubhu amabili (cishe amasonto amane kuya kwayisishiyagalombili ngemva kokukhulelwa) ahamba ngokuhambisana entanyeni. Uma lokhu kungenzeki kahle, i-TEF/EA ingumphumela.
Ngakho-ke, iyini ngempela i-tracheoesophageal fistula/esophageal atresia?
I-tracheoesophageal fistula (TEF) yilapho kukhona ukuxhumana phakathi komminzo kanye noqhoqhoqho. I-TEF ivamise ukwenzeka kanye ne-esophageal atresia (EA) okusho ngokuyisisekelo ukuthi umminzo awakheki ngendlela efanele ngesikhathi sokukhulelwa. I-TEF/EA yenzeka koku-1 kokuzalwa kwezi-3,000 kuya kwezi-5,000. Kwenzeka iyodwa cishe ku-40% wabathintekile, futhi kwezinye izimo kwenzeka nezinye izinkinga zokuzalwa noma njengengxenye ye-genetic syndrome. I-TEF/EA ibeka impilo engozini futhi idinga ukuhlinzwa ukuze kulungiswe ukonakala.
Kuze kube ngoNovemba 2019, ngangingakaze ngizwe nge-TEF/EA futhi kuze kube yileso sikhathi ekukhulelweni kwami, amasonto angama-32, nganginomuzwa wokuthi nginokunye ukukhulelwa okunempilo (indodana yami uHenry yazalwa ngo-11/2015). Ekuskeneni kwami okujwayelekile kwamaviki angama-32, u-OB-GYN wami wangithola ngokusemthethweni ukuthi ngine-polyhydramnios, okuyisamba esiningi kakhulu se-amniotic fluid esibelethweni (babelokhu beqaphe amazinga oketshezi lwami eduze kusukela ngiqokwa emasontweni angama-30), futhi nganginalokhu. ngokushesha udluliselwe kuchwepheshe. Ngaphezu koketshezi olwandisiwe, ibhamuza lesisu sendodakazi yami libonakale lilincane kunokuvamile esikeni. I-TEF/EA ayikwazi ukuxilonga ngokusemthethweni ngaphambi kokubeletha kodwa ngenxa yokwanda kwami koketshezi lwe-amniotic kanye nebhamuza elincane lesisu, kwakukhona ubufakazi obanele bokusikisela ukuthi lokhu kungase kube njalo. Phakathi nokuqokwa kochwepheshe, ngidlulisa ukunakekelwa kwami kusuka ku-OB-GYN engimethembayo kuya eqenjini lodokotela esibhedlela esisha, sixoxa ngezimo ezingcono kakhulu nezimbi kakhulu ngokuxilongwa okuqinisekisiwe kwe-TEF/EA kanye nokuhlangana nodokotela ohlinzayo owaziwayo emhlabeni wonke owasungula. ukuhlinzwa okusindisa ukuphila ndodakazi yami izikhwepha Ngangidinga, ngangililela umqondo wokuletha ingane enempilo ekhaya (usuku lwakhe lokuzalwa olwalulindelwe kwakunguJanuwari 2, 2020) futhi ngizama ukuhlala nginethemba - ngoba ukuxilongwa akuzange kuqinisekiswe futhi usengaba nempilo enhle.
Ukuze kudambise ukukhathazeka kwami, sahlela ukungeniswa okuhleliwe emasontweni angama-38 ukuze sigweme amaholide kaKhisimusi kanye Nonyaka Omusha ukuze siqinisekise ukuthi udokotela ohlinzayo engangifuna ukumlungisa nge-TEF/EA wayesocingweni futhi engekho eholidini. Kuthini lokho mayelana nezinhlelo ezibekwe kahle? Noma kunjalo, u-Romy Louise Ottrix ungene emhlabeni emasontweni amahlanu ngaphambi komhla zingama-29 kuNovemba, 2019 - usuku olungemva kwe-Thanksgiving - elinye iholidi, okusho ukuthi udokotela wethu ohlinzayo esimkhethile ebesikhule simthemba ukuthi ubengeke atholakale ukuthi amhlinze. Ngemva kwesikhashana esincane sesikhumba esikhumbeni, odokotela basusa u-Romy ukuze abeke i-scope phansi emphinjeni wakhe - i-TEF / EA yakhe yaqinisekiswa khona lapho ekamelweni lokubeletha - i-esophagus yakhe yayiyisikhwama esincane, esingamasentimitha ambalwa kuphela ukujula. Kamuva, i-X-ray yesifuba yaqinisekisa ukuthi wayexhumene kusuka kuqhoqhoqho kuya esiswini.
Ukuhlinzwa kwakhe kwakuhlelwe ukuba kwenziwe ngakusasa ekuseni, ukuhlinzwa okwathatha amahora amathathu okwathatha amahora angaphezu kwayisithupha. Ngemva kokuhlinzwa, sambona egunjini labagula kakhulu (NICU) lapho alaliswa khona izinsuku eziyisikhombisa, asikwazanga ukumnyakazisa noma ukumbamba. Kwakuyizinsuku eziyisikhombisa ezinde kunazo zonke zokuphila kwami. Ukusuka lapho, saba nohambo olude lokuthola ikhaya lethu elimnandi laseRomy. Odokotela bathola enye i-fistula phakathi komminzo noqhoqhoqho - okwathi kamuva satshelwa ukuthi ihlangene nodonga lweseli - okwenza i-fistula ibe yingozi kakhulu. Le fistula yenza ukuthi kungaphephile ukuthi adliwe ngomlomo. Ukuze bamphuthumise ekhaya, odokotela bamfaka ishubhu le-gastrostomy (g-tube) ukuze lilethe umsoco kanye noketshezi esiswini sakhe. Ezinyangeni ezingu-18 ezalandela, ngondla uRomy izikhathi ezine kuya kweziyisihlanu ngosuku nge-g-tube yakhe. Njengoba ungacabanga, lokhu bekudla isikhathi kakhulu futhi ngenxa yalokho, ukuzihlukanisa. Ngemva kwezinqubo eziyisikhombisa zokuvala i-fistula yokuzalwa, sanikezwa ngokulungile ukondla u-Romy ngomlomo. Ubelokhu elungisa isikhathi esilahlekile, ezama noma yini nakho konke okubekwa phambi kwakhe .
Sisanda kugubha iminyaka emibili ka-Romy ebuya ekhaya evela eNICU, lapho achitha khona amasonto amade ayisishiyagalombili. Namuhla, uneminyaka emibili ubudala enempilo, echumayo futhi esezingeni lama-71 ngesisindo kanye ne-98th percentile ngokuphakama - edlula konke lokho odokotela abakulindele abamxwayise ngokuthi "angase ahluleke ukuchuma" noma okungenzeka ukuthi ahlala emncane. . Kuze kube manje, usehlinzwe izikhathi ezingaphezu kuka-10 futhi cishe uzodinga okwengeziwe njengoba ekhula. Kuvamile ukuthi izingane ze-TEF/EA zithole ukuncipha komminzo wazo endaweni yokuqala yokulungisa, okudinga ukunwetshwa ukuze ukudla kungabambeki.
Pho kungani kufanele siqwashise? Ngoba abantu abaningi abakaze bezwe nge-TEF/EA, ngaphandle uma kukhona omaziyo owake wabhekana nakho mathupha; ngokungafani nezinye izinkinga eziningi zokuzalwa, akukho ukusekelwa okuningi. Imbangela ayikaziwa, kumanje kukholakala ukuthi idalwa yinhlanganisela yofuzo kanye nemvelo. Izingane eziningi ezine-TEF/EA ziba nezinkinga eziqhubekayo kudala ngemva kokuhlinzwa kwazo kwasekuqaleni, kanti ezinye kukho konke ukuphila kwazo. Lokhu kuhlanganisa i-acid reflux, i-floppy esophagus, ukwehluleka ukukhula kahle, ukukhwehlela okukhonkothayo, imigudu yokuphefumula empintshekile, ukulangazelela ukuthula, phakathi kwezinye izinto eziningi.
Izincazelo ze-TEF/EA nezibalo ezikhishwe:
https://medlineplus.gov/genetics/condition/esophageal-atresia-tracheoesophageal-fistula/