Ndira iTracheoesophageal Fistula/Esophageal Atresia (TEF/EA) Mwedzi Wekuzivisa
Sophagus ichubhu inobatanidza huro nedumbu. The trachea ichubhu inobatanidza huro nemhepo nemapapu. Mukukura kwekutanga, dzinotanga sechubhu imwechete iyo inowanzo patsanurwa kuita machubhu maviri (panguva ingangoita masvondo mana kusvika masere mushure mekubata pamuviri) anomhanya achienderana muhuro. Kana izvi zvikasaitika nemazvo, TEF/EA mhedzisiro.
Saka, chii chaizvo chinonzi tracheoesophageal fistula/esophageal atresia?
Tracheoesophageal fistula (TEF) inguva apo pane hukama pakati pegurogus uye trachea. TEF inowanzoitika pamwe nesophageal atresia (EA) izvo zvinoreva kuti esophagus haina kuumbwa zvakanaka panguva yekuzvitakura. TEF/EA inoitika mu1 mu3,000 kusvika ku5,000 vanozvarwa. Inoitika yoga munenge 40% yevakabatwa, uye mune dzimwe nguva inoitika nezvimwe zviremara zvekuberekwa kana sechikamu che genetic syndrome. TEF/EA inoisa upenyu panjodzi uye inoda kuvhiyiwa kugadzirisa nyonganiso yacho.
Kusvika munaNovember 2019, ndakanga ndisati ndambonzwa nezve TEF / EA uye kusvika panguva iyoyo mukuzvitakura kwangu, mavhiki makumi matatu nemaviri, ndaive pasi pekufungidzira kuti ndaive neimwe nhumbu ine hutano (mwanakomana wangu Henry akazvarwa 32/11). Pamaitiro angu emazuva makumi matatu nemaviri ekuongorora, wangu OB-GYN akandivheneka zviri pamutemo kuti ndine polyhydramnios, inova yakawandisa yeamniotic fluid mudumbu (vakange vachitarisisa huwandu hwemvura yangu zvakanyanya kubva pakugadzwa kwangu kwemavhiki makumi matatu), uye ndaive nekukurumidza kuendeswa kune nyanzvi. Pamusoro pemvura yakawedzera, dumbu remwanasikana wangu rakaonekwa ridiki pane zvakajairika pa scan. TEF/EA haigone kuongororwa zviri pamutemo prenatal asi kupihwa yangu yakawedzera amniotic fluid uye dumbu diki bubble, pakanga paine humbowo hwakakwana hwekuratidza kuti izvi zvingave zvakadaro. Mukati mekugadzwa kwenyanzvi, kuendesa kutarisirwa kwangu kubva kuna OB-GYN wangu wandaivimba naye kuenda kuchikwata chevanachiremba pachipatara chitsva, tichikurukura nezveakanakisa uye akaipisisa mamiriro ezvinhu ane akasimbiswa TEF/EA kuongororwa uye kusangana nachiremba ane mukurumbira pasi rose akange agadzira. kuvhiyiwa kunoponesa upenyu mwanasikana wangu simba zvandaida, ndaiva nezvikamu zvakaenzana ndichichema pfungwa yekuunza kumba mwana ane hutano (zuva rake raitarisirwa raive Ndira 2, 2020) uye kuyedza kuramba ndiine tariro - nekuti kuongororwa hakuna kusimbiswa uye anogona kunge achiri mutano.
Kuti ndideredze kushushikana kwangu, takaronga kurongerwa kuratidzwa pamavhiki e38 kuti tidzivise zororo reKisimusi neGore Idzva kuti tive nechokwadi chekuti chiremba wekuvhiya wandaida kumuitira TEF / EA kugadzirisa aive parunhare uye asiri pazororo. Chii icho chiri kutaura pamusoro pezvakanakisa zvirongwa? Zvakadaro, Romy Louise Ottrix akaita kuti apinde munyika mavhiki mashanu kutanga kwaNovember 29, 2019 - zuva rakatevera Kutenda - imwe zororo, zvichireva kuti chiremba wedu akasarudzwa nemaoko uyo watakanga takakura tichivimba aisazovapo kuti amuvhiye. Mushure mechinguva chiduku cheganda kune ganda, vanachiremba vakabvisa Romy kure kuti aise chiyero pasi pehuro yake - TEF / EA yake yakasimbiswa ipapo muimba yekuberekera - gumbo rake raiva bhegi duku, masendimita mashoma chete. Gare gare, X-ray yepachipfuva yakasimbisa kuti aiva nekubatana kubva patrachea kusvika kudumbu rake.
Kuvhiyiwa kwake kwakarongwa mangwanani akatevera, kuvhiyiwa kwemaawa matatu kwakaguma kwemaawa anopfuura matanhatu. Mushure mekuvhiyiwa, takamuona muimba yevacheche (NICU) umo akagariswa kwemazuva manomwe akatevera, uye takatadza kumufambisa kana kumubata. Aive mazuva manomwe akareba ehupenyu hwangu. Kubva ipapo, takava nerwendo rwakanyanya kuti titore imba yedu yakanaka yeRomy. Vanachiremba vakawana imwe fistula pakati pegurokuro netrachea - iyo yatakazoudzwa kuti yakagovana mudhuri wesero - zvichiita kuti fistulas iwedzere. Fistula iyi yakaita kuti ive isina ngozi kuti adyiswe nemuromo. Kuti akurumidze kudzoka kumba, vanachiremba vakamuisira gastrostomy chubhu (g-tube) kuti imuunzire zvinovaka muviri uye mvura mudumbu make. Kwemwedzi 18 yakatevera, ndaidyisa Romy kana kana kashanu pazuva kuburikidza neg-tube yake. Sezvaungafungidzira, izvi zvaitora nguva zvakanyanya uye nekuda kweizvozvo, kuzviparadzanisa. Mushure memaitiro manomwe ekuvhara congenital fistula, takapiwa zvakanaka kudyisa Romy nemuromo. Anga achigadzirisa nguva yakarasika, achiedza chero chinhu nezvose zvinoiswa pamberi pake .
Tichangobva kupemberera Romy yemakore maviri ekudzoka kumba kubva kuNICU, kwaakapedza mavhiki masere akareba. Nhasi, ane hutano, ari kusimukira ane makore maviri ekuberekwa ari mumakumi manomwe nerimwe muzana ehuremu uye makumi mapfumbamwe nemasere ehuremu - achipfuura zvese zvaitarisirwa nanachiremba vake avo vakayambira kuti "angatadza kubudirira" kana kuti angangogara ari mudiki. . Kusvika iye zvino, akavhiyiwa kanopfuura ka71 uye angangoda mamwe sezvaanokura. Zvakajairika kuti vacheche veTEF/EA vanzwe kupera kwegurokuro yavo panzvimbo yekutanga yekugadzirisa, zvinoda dilations kuitira kuti chikafu chisaramire.
Saka nei tichifanira kusimudzira ruzivo? Nekuti vanhu vazhinji havasati vambonzwa nezveTEF/EA, kunze kwekunge iwe uchiziva mumwe munhu akazvionera wega; kusiyana nezvimwe zvakawanda zvakaremara pakuzvarwa, hapana tsigiro yakawanda. Chikonzero hachisati chazivikanwa, iye zvino zvinotendwa kuti zvinokonzerwa nekubatanidzwa kwemajini uye zvakatipoteredza. Vacheche vazhinji vane TEF/EA vanosangana nematambudziko anoramba achienderera mberi mushure mekuvhiyiwa kwavo kwekutanga, uye mamwe kwehupenyu hwavo hwose. Izvi zvinosanganisira acid reflux, floppy esophagus, kutadza kubudirira, kukosora, kuvharika kwemhepo, kunyarara kushuvira, pakati pezvimwe zvinhu zvakawanda.
TEF/EA tsananguro uye manhamba akadhonzwa kubva:
https://medlineplus.gov/genetics/condition/esophageal-atresia-tracheoesophageal-fistula/