NgoJanuwari yiNyanga yoKwazisa ngeTracheoesophageal Fistula/Esophageal Atresia (TEF/EA)
Umqala ngumbhobho odibanisa umqala nesisu. Uqhoqhoqho ngumbhobho odibanisa umqala kuqhoqhoqho kunye nemiphunga. Kuphuhliso lwangethuba, ziqala njengetyhubhu enye eqhele ukwahlulahlula ibe yityhubhu ezimbini (malunga neeveki ezine ukuya kwezisibhozo emva kokukhawulwa) ezihamba ngokunxuseneyo entanyeni. Ukuba oku akwenzeki ngokuchanekileyo, i-TEF/EA sisiphumo.
Ke, yintoni kanye kanye i-tracheoesophageal fistula/esophageal atresia?
I-tracheoesophageal fistula (TEF) kuxa kukho unxibelelwano phakathi kommizo kunye noqhoqhoqho. I-TEF iyenzeka rhoqo kunye ne-esophageal atresia (EA) nto leyo ithetha ukuba ummizo awumi kakuhle ngexesha lokukhulelwa. I-TEF/EA yenzeka kwi-1 kwi-3,000 ukuya kwi-5,000 yokuzalwa. Kwenzeka yodwa malunga ne-40% yabachaphazelekayo, kwaye kwezinye iimeko kwenzeka kunye nezinye iziphene zokuzalwa okanye njengenxalenye ye-genetic syndrome. I-TEF/EA ibeka ubomi esichengeni kwaye ifuna utyando ukulungisa ukungahambi kakuhle.
Kuze kube nguNovemba ka-2019, andizange ndive nge-TEF / EA kwaye kude kube lelo xesha ekukhulelweni kwam, iiveki ze-32, ndandiphantsi kwengcamango yokuba ndinokukhulelwa okunempilo (unyana wam uHenry wazalwa nge-11 / 2015). Kwinkqubo yam yesiqhelo yeeveki ezingama-32 zokuskena, u-OB-GYN wam wandifumanisa ngokusesikweni ukuba ndine-polyhydramnios, esisixa esigqithileyo se-amniotic fluid esibelekweni (babebeke esweni amanqanaba olwelo lwam ngokusondeleyo ngakumbi ukusukela kwisithuba sam seeveki ezingama-30), kwaye bendiye ndafumana i-polyhydramnios. ngokukhawuleza uthunyelwe kwingcali. Ukongeza kulwelo olwandisiweyo, iqamza lesisu sentombi yam labonakala lincinci kunesiqhelo kwiskeni. I-TEF/EA ayinakufunyaniswa ngokusemthethweni ngaphambi kokuzalwa kodwa ngenxa yokwanda kwam kwe-amniotic fluid kunye neqamza lesisu esincinci, bekukho ubungqina obaneleyo bokucebisa ukuba oku kunokuba njalo. Phakathi kokuqeshwa kweengcali, ukudlulisa ukhathalelo lwam ukusuka kwi-OB-GYN yam ethembekileyo ukuya kwiqela loogqirha kwisibhedlele esitsha, ukuxoxa ngezona meko zingcono kunye nezona zibi kakhulu kunye nokuxilongwa kwe-TEF / EA eqinisekisiweyo kunye nentlanganiso kunye nogqirha wotyando owaziwayo kwihlabathi. utyando olusindisa ubomi ntombi yam kungenzeka Isidingo, bendilingana ndilila umbono wokuzisa umntwana osempilweni (umhla wakhe ebelindeleke ukuba aphume ngawo ibinguJanuwari 2, 2020) kwaye ndizama ukuhlala ndinethemba - kuba ukuxilongwa bekungaqinisekwanga kwaye usenempilo egqibeleleyo.
Ukuthomalalisa unxunguphalo lwam, sacwangcisa ukuqaliswa okucwangcisiweyo kwiiveki ezingama-38 ukuphepha iiholide zeKrisimesi kunye noNyaka oMtsha ukuze siqinisekise ukuba ugqirha bendifuna ukumenzela ukulungiswa kwe-TEF/EA wayekufowunelo kwaye akakho ekhefini. Ithini loo nto malunga nezicwangciso ezibekwe kakuhle? Ngapha koko, uRomy Louise Ottrix ungene kwihlabathi kwiiveki ezintlanu kwangoko nge-29 kaNovemba ka-2019-usuku olusemva koMbulelo-enye iholide, oko kuthetha ukuba ugqirha wethu okhethwe ngesandla ebesimthembile ebengayi kufumaneka ukuba enze utyando lwakhe. Emva kwemizuzu embalwa yesikhumba esikhumbeni, oogqirha bamgxotha uRomy ukuba abeke i-scope emqaleni wakhe - i-TEF / EA yakhe yaqinisekiswa khona apho kwigumbi lokuhambisa - i-esophagus yakhe yayiyi-pouch encinci, kuphela iisentimitha ezimbalwa ezinzulu. Kamva, iX-reyi yesifuba yaqinisekisa ukuba wayenonxibelelwano olusuka kuqhoqhoqho ukuya esiswini.
Utyando lwakhe lwacetywa ngentsasa elandelayo, utyando lweeyure ezintathu olwathabatha iiyure ezintandathu. Emva kotyando, sambona kwigumbi labagula kakhulu (i-NICU) apho walaliswa khona iintsuku ezisixhenxe ezilandelayo, kwaye asikwazanga ukumshukumisa okanye ukumbamba. Yayiyeyona ntsuku zisixhenxe zinde ebomini bam. Ukusuka apho, sasinohambo olude lokufumana ikhaya lethu elimnandi laseRomy. Oogqirha bafumanisa enye i-fistula phakathi kommizo wakhe kunye noqhoqhoqho - esathi kamva saxelelwa ukuba sabelana ngodonga lweseli - yenza ukuba i-fistula ibe lula ngakumbi. Le fistula yenza ukuba angakhuselekanga ukuba ondliwe ngomlomo. Ukuze bambuyisele ekhaya ngokukhawuleza, oogqirha bamfakela ityhubhu ye-gastrostomy (g-tube) ukuze izise isondlo kunye nolwelo ngqo esiswini sakhe. Kwiinyanga ezili-18 ezalandelayo, ndandimondla uRomy izihlandlo ezine ukuya kwezihlanu ngosuku nge-g-tube yakhe. Njengoko unokucinga, oku kwakudla ixesha kakhulu kwaye ngenxa yoko, ukwahlula. Emva kweenkqubo ezisixhenxe zokuvala i-fistula yokuzalwa, sanikwa ukulungele ukondla uRomy ngomlomo. Ulilungisa ixesha elilahlekileyo, ezama nantoni na nayo yonke into ebekwe phambi kwakhe .
Sisanda kubhiyozela isikhumbuzo seminyaka emibini kaRomy ebuya ekhaya evela eNICU, apho achithe khona iiveki ezisibhozo. Namhlanje, usempilweni, uneminyaka emibini ubudala okwipesenti ezingama-71 zobunzima kunye nepesenti ezingama-98 zobude-ugqitha konke ulindelo lukagqirha wakhe abamlumkisile ukuba "angaphumelela" okanye onokuhlala emncinci. . Ukuza kuthi ga ngoku, sele enziwe utyando olungaphezulu kwe-10 kwaye kuya kufuneka ukuba luninzi njengoko ekhula. Iqhelekile into yokuba iintsana ze-TEF/EA zibe namava okuncipha kommizo wazo kwindawo yokuqala yokulungisa, efuna ukwandiswa ukuze ukutya kungaxinga.
Ngoko kutheni kufuneka sikhulise ulwazi? Ngenxa yokuba abantu abaninzi abazange beve nge-TEF/EA, ngaphandle kokuba uyazi umntu oye wazibonela ngokwakhe; ngokungafaniyo nezinye iziphene zokuzalwa, akukho nkxaso ingako. Isizathu asikaziwa, okwangoku kukholelwa ukuba kubangelwa ukuhlanganiswa kwezinto zofuzo kunye nendalo. Uninzi lweentsana ezine-TEF/EA zifumana iingxaki eziqhubekayo ixesha elide emva kotyando lwazo lokuqala, kwaye ezinye kubo bonke ubomi babo. Ezi ziquka i-acid reflux, i-floppy esophagus, ukusilela ukukhula, ukhohlokhohlo olukhonkothayo, iindlela zomoya ezixineneyo, ukulangazelela ukuthula, phakathi kwezinye izinto ezininzi.
TEF/EA iinkcazelo kunye nezibalo zitsalwa ukusuka:
https://medlineplus.gov/genetics/condition/esophageal-atresia-tracheoesophageal-fistula/