Abaganga bo muri Leta Zunze Ubumwe z’Amerika bakoze igikorwa cy’ubuvuzi kidasanzwe, babaga umwana wari ukiri mu nda ya nyina, basubiza amara ye mu nda mbere y’uko avuka.
Iki gikorwa cy’ubuvuzi cyakorewe Maisie Savage, umugore w’imyaka 29 wo mu Mujyi wa Londres mu Bwongereza, ubwo yari amaze ibyumweru 26 atwite.
Umwana we witwa Theo, ubu ufite amezi atanu kandi ukura neza, yari afite ubumuga umwana avukana bwitwa “gastroschisis”. Iyi ni indwara iterwa n’uko umukondo w’umwana udakura ngo wifunge neza, bigatuma amara anyura mu mwenge uba hafi y’umukondo, agakomeza gukurira hanze y’inda.
Theo yabaye umwana wa gatatu ku Isi wabazwe muri ubu buryo bushya, mu igerageza ry’ubuvuzi rigamije kureba niba indwara ya gastroschisis ikomeye ishobora kuvurwa umwana akiri mu nda ya nyina. Ubusanzwe, abana bafite iki kibazo babagwa nyuma yo kuvuka.
Iki gikorwa cyakozwe n’itsinda ry’abaganga kabuhariwe mu kubaga abana bakiri mu nda n’abamaze kuvuka, bo mu Bitaro bya Texas Children’s Hospital, mu Mujyi wa Houston.
Maisie n’umugabo we Josh French w’imyaka 36, bombi bakaba abarimu, bavuze ko bishimiye cyane uburyo igikorwa cyo kubaga umwana wa bo cyagenze. Bavuga ko nubwo banyuze mu bihe bikomeye byuzuyemo ubwoba n’impungenge, ubu bishimira kubona Theo ameze nk’abandi bana bazima.
Maisie yagize ati: “Ni igitangaza gito, si ko biri?”
Icyakora, aba babyeyi bazi neza ko iyo icyo gikorwa kitagenda neza, ubuzima bw’umwana wa bo bwashoboraga kuba butandukanye cyane n’ubwo afite ubu.
Maisie na Josh bavuga ko mbere yo kujya guimisha inda mu cyumweru cya 20, nta kimenyetso na kimwe bari bafite cyerekana ko umwana wa bo ashobora kuba afite ikibazo gikomeye.
Bagiye kwa muganga bishimye, biteguye kubona ishusho y’umwana wa bo no kumenya niba akura neza. Icyo gihe bari bataramenya ko umwana bari batwite ari umuhungu.
Josh yavuze ko bari bagiye kwa muganga bishimye nk’abandi babyeyi bose baba bategereje kureba umwana wabo ku cyuma gisuzuma inda.
Ati: “Ubwo twegerezaga igihe cyo gupimisha inda y’ibyumweru 20, twari dushishikajwe gusa no kubona ifoto y’umwana wacu. Icyo gihe ntitwari tuzi ko ari umuhungu.”
Ibyishimo bya bo byaje kuvangwa n’ubwoba ubwo abaganga bababwiraga ko umwana wa bo afite gastroschisis. Josh yavuze ko kumenya ko Theo afite icyo kibazo byabatunguye kandi bikabatera ubwoba bukomeye.
Abaganga batangiye kubakurikiranira hafi no kubasobanurira uko ubuzima bw’umwana wabo bwashoboraga kumera nyuma yo kuvuka. Bamaze kugera ku byumweru 24 by’inda, inzobere zo mu Bitaro bya Great Ormond Street Hospital for Children, GOSH, i Londres, zatangiye kubategurira ibyashoboraga kuba mu mezi atandatu ya mbere y’ubuzima bwa Theo.
Nyuma y’ibindi bizamini, abaganga basanze atari gastroschisis isanzwe, ahubwo yari afite ubwoko bukomeye kandi bugoye kuvura buzwi nka complex gastroschisis.
Muri ubwo bwoko, amara ashobora kuba yarangiritse, yarazibye, yarapfumutse, yarihinduranyije cyangwa igice cyayo kikaba kitakibona amaraso ahagije. Umwana ufite icyo kibazo ashobora gukenera kubagwa inshuro nyinshi, kumara amezi mu gice cyita ku bana bavutse barembye no kugaburirwa intungamubiri zinyujijwe mu mutsi.
Gastroschisis ni iki?
Gastroschisis ibaho igihe imikaya n’urukuta rw’inda y’umwana bidakuze neza mu ntangiriro z’inda. Hasigara akenge gato, akenshi ku ruhande rw’iburyo rw’umukondo, amara agasohokera muri ako kenge.
Amara aba ari hanze y’umubiri w’umwana, nta ruhu cyangwa agahu kayakingira. Akomeza kureremba mu mazi akikije umwana mu nda ya nyina, azwi nka amniotic fluid.
Kumara igihe kinini muri ayo mazi bishobora gutuma amara abyimba, akomereka cyangwa akora nabi. Ashobora no kwizinga, bikabuza amaraso kuyageramo neza. Iyo yangiritse cyane, umwana ashobora kuvukana igice cy’amara cyapfuye, cyazibye cyangwa cyapfumutse.
Nubwo umwandiko w’ibanze uvuga ko iyi ndwara iboneka ku mwana umwe mu bana 3,000 bavuka mu Bwongereza, imibare ishobora gutandukana bitewe n’akarere cyangwa uburyo yakusanyijwe. Ibitaro bya Great Ormond Street bivuga ko igaragara ku mwana umwe mu bana bagera ku 3,000, mu gihe izindi serivisi za NHS zitanga imibare iri hagati y’umwana umwe mu 3,000 n’umwe mu 5,000. Ibitaro bya Great Ormond Street bisobanura ko ari indwara ikomeye isaba kuvurwa vuba umwana akimara kuvuka.
Impamvu nyayo itera gastroschisis ntiramenyekana. Abaganga bavuga ko atari indwara isanzwe ihererekanywa mu miryango kandi ko akenshi idaterwa n’ikintu umubyeyi yakoze cyangwa atakoze igihe yari atwite.
Ubushakashatsi bwagaragaje ko iboneka cyane ku bana babyawe n’abagore bakiri bato, by’umwihariko abafite munsi y’imyaka 20. Hari ubushakashatsi bwagaragaje ko kunywa itabi cyangwa gukoresha ibiyobyabwenge bishobora kongera ibyago, ariko abagore benshi babyara abana bafite gastroschisis nta na kimwe muri ibyo baba barakoze.
Itandukaniro hagati y’ubwoko busanzwe n’ubukomeye
Abana benshi bafite gastroschisis baravurwa bagakira. Amakuru atangwa na Guy’s and St Thomas’ NHS Foundation Trust agaragaza ko abana barenga 95 ku 100 bafite ubu burwayi bashobora gukira neza, cyane cyane iyo amara ya bo atarangiritse bikomeye. Guy’s and St Thomas’ NHS Foundation Trust ivuga ko abana bashobora kuvuka igihe kitageze, bakagira ibiro bike cyangwa bakabanza kugira ibibazo byo kugaburirwa.
Mu bihe byoroheje, abaganga basubiza amara mu nda nyuma yo kuvuka, bagafunga umwenge wari hafi y’umukondo. Hari igihe bikorwa mu gikorwa kimwe cyo kubaga, ariko iyo inda ari nto ku buryo amara adashobora guhita asubizwamo yose, ashyirwa mu gafuka kabugenewe kitwa silo. Ako gafuka gafasha kuyasubiza mu nda buhoro buhoro mu gihe cy’iminsi runaka.
Umwana ashobora kumara ibyumweru mu gice cyita ku bana bavutse barembye, ategereje ko amara atangira gukora neza. Muri icyo gihe, intungamubiri zishobora gutangwa zinyujijwe mu mutsi kuko aba atarashobora konka cyangwa gufata ibiryo binyuze mu gifu.
Ku bana bafite complex gastroschisis, ibintu birushaho gukomera. Ishami ryita ku bana ry’ibitaro bya Cambridge University Hospitals rivuga ko abana bari hagati ya 5% na 10% baba bafite ubwo bwoko bukomeye. Bashobora kuba bafite amara yapfumutse, yazibye, yapfuye kubera kubura amaraso cyangwa asigaye ari magufi cyane. Ibitaro bya Kaminuza ya Cambridge ivuga ko abo bana bashobora gukenera ibindi bikorwa byo kubaga no kumara igihe kirekire bahabwa intungamubiri zinyujijwe mu mitsi.
Mu bihe bikomeye kurusha ibindi, umwana ashobora kumara amezi atandatu mu gice cyita ku bana bavutse barembye, kubagwa inshuro nyinshi no kugaburirwa mu mutsi igihe gishobora kugera ku myaka ibiri. Hari n’abashobora gukenera guhabwa amara y’undi muntu.
Ababyeyi ba Theo bari babwiwe ko, nubwo yahabwa ubuvuzi bwo ku rwego rwo hejuru, uburwayi bwe bwashoboraga gushyira ubuzima bwe mu kaga.
Boherejwe muri Leta Zunze Ubumwe z’Amerika
Nyuma yo kubona ko Theo yari afite ubwoko bukomeye bwa gastroschisis, abaganga bo muri Great Ormond Street Hospital bohereje dosiye ye mu Bitaro bya Texas Children’s Hospital i Houston.
Muri ibyo bitaro, itsinda ry’abaganga bayobowe na Dr Michael Belfort ryari riri gukora igerageza rya mbere ry’ubuvuzi rigamije gusana complex gastroschisis mbere y’uko umwana avuka.
Dr Belfort, ushinzwe ubuvuzi muri iryo gerageza, yari asanzwe afite ubunararibonye mu kubaga abana bakiri mu nda. Yari yaragize uruhare mu guteza imbere uburyo bwo kuvura abana bafite spina bifida, ubumuga umwana avukana aho urutirigongo n’ibice birukikije bidafunga neza.
Maisie yabwiwe ko kugira ngo yinjire muri iryo gerageza, yagombaga guhita ajya muri Texas kandi akagumayo kugeza abyaye. Icyo cyari icyemezo gikomeye ku muryango, kuko cyabasabaga kuva mu Bwongereza, gusiga ubuzima bwabo busanzwe no kujya kumara amezi muri Amerika batazi neza uko igikorwa kizagenda.
Maisie yagize ati: “Cyari icyemezo gikomeye cyane.”
Nubwo bari bafite ubwoba, bahisemo kwemera iryo gerageza, bizeye ko ryashoboraga guha umwana wa bo amahirwe yo kuvuka afite amara yasubijwe mu mwanya wa yo.
Mbere yo kujya muri Amerika, Maisie yabanje kujya mu Bitaro bya Leuven mu Bubiligi. Inzobere zamuteye umuti wa Botox ziwunyuza mu nda ibyara, iwugeza mu mikaya y’urukuta rw’inda ya Theo.
Botox izwi cyane mu bikorwa byo kugabanya iminkanyari, ariko ikoreshwa no mu buvuzi kubera ubushobozi bwa yo bwo koroshya imikaya no kuyibuza kwikanya cyane. Kuri Theo, yari igamije koroshya imikaya yo ku nda kugira ngo abaganga bazashobore gusubizamo amara no gufunga umwenge nta mbaraga nyinshi zikoreshejwe.
Nyuma y’icyo gikorwa, umuryango wakomereje muri Texas. Igikorwa nyirizina cyo kubaga cyakozwe mu Ugushyingo 2025, Maisie amaze ibyumweru 26 atwite.
Uko igikorwa cyo kubaga cyagenze
Abaganga babanje gufungura inda ya Maisie, basohora igice cy’inda ibyara kugira ngo bayishyire ahantu haborohereza kugera kuri Theo no gukora igikorwa batarangiza inda.
Amazi yari akikije umwana yakuwemo, asimbuzwa umwuka wa karuboni, CO₂. Uwo mwuka wafashije kwagura umwanya abaganga bakoreragamo no gutuma amashusho y’imbere agaragara neza.
Bakoresheje uburyo bwo kubaga banyujije ibikoresho mu myenge mito, buzwi nka keyhole surgery cyangwa kubaga hadakozwe igisebe kinini. Bagendaga basunika amara ya Theo buhoro kandi bitonze, bayasubiza mu nda ye. Nyuma yo kuyasubizamo, bafunze umwenge wo ku nda bakoresheje ubudodo bwabugenewe.
Ibyo byose byakozwe umwana akiri mu nda, umutima we ukomeza gutera kandi inda ya nyina igomba gukomeza kugeza igihe cyo kubyara.
Josh yavuze ko igihe abaganga bari mu cyumba cyo kubagiramo, yategereje afite impungenge zikomeye. Kutamenya ibyarimo kuba buri kanya byatumye amasaha yamara ategereje asa n’aho ari icyumweru cyose.
Ati: “Uburebure bw’uwo munsi bwari nk’icyumweru. Gutegereza no kutamenya neza ibyabaga kuri buri cyiciro byari bikomeye cyane.”
Igikorwa cyagenze neza, nta kibazo gikomeye kibaye kuri Maisie cyangwa kuri Theo.
Nyuma yo kubagwa, Maisie yasigaranye inkovu ikubye hafi kabiri iy’umugore wabazwe abyara. Itandukaniro ni uko we yari agifite umwana wo gukomeza gutwara mu nda mu gihe cy’ibindi byumweru 14.
Gukira byari bigoye. Theo yakomezaga gukura no kugenda mu nda, rimwe na rimwe agatera imigeri ahari inkovu, Maisie akababara.
Yagize ati: “Gukira byari bikomeye, ariko byari bifite agaciro.”
Abaganga bakomeje gukurikiranira hafi Maisie na Theo, bagenzura uko igikomere cye gikira, uko umwana akura n’uko urukuta rw’inda ye rwari rwarafunzwe.
Dr Belfort yavuze ko itsinda rye ryishimiye cyane ibyavuye muri icyo gikorwa.
Yagize ati: “Umubyeyi, umwana, igikorwa cyo kubaga, igihe cya cyo, no kuba nta kibazo na kimwe cyabaye mu gihe cyo kubaga umwana cyangwa nyuma ya ho—ni ibintu bitangaje.”
Theo yavutse nta kindi gikorwa gikomeye akorewe
Maisie yakomeje gutwara inda kugeza igihe cya yo kirangiye. Muri Gashyantare 2026, yabyariye Theo muri Texas, avuka anyuze mu nzira isanzwe.
Kuba yashoboye kuvuka atabazwe nyina byagaragaje ko igikorwa cyo gusubiza amara mu nda kitari cyabangamiye uburyo asanzwe avukamo. Gastroschisis ubwayo ntisaba buri gihe ko umubyeyi abyara abazwe; uburyo bwo kubyara bugenwa n’imiterere y’umubyeyi n’umwana.
Theo yavutse amara ye ari mu nda kandi umwenge wafunzwe. Ibyo byamurinze ubuvuzi bukomeye yari gushobora gukenera akimara kuvuka, burimo kubagwa inshuro nyinshi no kumara amezi mu gice cyita ku bana bavutse barembye.
Nyuma y’amezi atanu, ababyeyi be bavuga ko akura neza kandi ko imibereho ye imeze nk’iy’abandi bana.
Maisie yagize ati: “Ibyo abaganga bakoze byahinduye burundu intangiriro mbi cyane ubuzima bwe bwashoboraga kugira. Ubu ameze neza cyane kandi ni umwana usanzwe rwose.”
Josh na we yavuze ko we n’umugore we bumva baragize amahirwe adasanzwe. Yashimiye amakipe y’abaganga yo mu Bitaro bya Great Ormond Street, Ibitaro bya Leuven na n’Ibitaro by’Abana bya Texas yabafashije mu bihe byari byuzuyemo ihungabana.
Ati: “Ingaruka nziza bagize kuri twe nk’umuryango ziratangaje. Batwakiriye neza cyane. Uburyo batwitayeho bwari ku rwego rwo hejuru kandi batumye ibihe bikomeye twanyuragamo birushaho kworoha. Ubu dufite uyu mwana wacu kandi ntitwashoboraga kugira ibyishimo birenze ibi.”
Iki gikorwa kiracyari mu igerageza ry’ubuvuzi. Abaganga bakeneye gukomeza gukurikirana Theo n’abandi bana bazakorerwa ubu buvuzi kugira ngo barebe niba nta bibazo bishobora kugaragara nyuma y’igihe.
Bazakenera kandi kugereranya ubuzima bw’ababazwe bakiri mu nda n’ubw’abavuwe nyuma yo kuvuka. Ibyo bizafasha kumenya niba ibyiza by’ubu buryo biruta ingorane zishobora guterwa no kubaga umwana n’umubyeyi inda ikiri nto.
Niba igerageza rigaragaje ko uburyo bwizewe kandi bukora neza, bushobora kugezwa mu Bwongereza. Professor Paolo De Coppi, inzobere mu kubaga abana mu BItaro bya Great Ormond Street akaba anayobora ubushakashatsi ku ngirabuzimafatizo n’ubuvuzi busana ibice by’umubiri muri University College London, yavuze ko yifuza gutangira kuhakorera ibyo bikorwa.
Yagize ati: “Turizera ko vuba aha tuzashobora kugeza ubu buvuzi ku barwayi benshi kurushaho.”
Ubufatanye hagati ya y’Ibitaro by’Abana bya Texas n’Ibitaro bya Great Ormond Street bushobora gufasha gusangira ubumenyi, guhugura abaganga no kugeza uburyo bwo kubaga abana bakiri mu nda mu bihugu byinshi.
Inda ibyara nk’ahantu hashya ho kubagira
Dr Belfort avuga ko imbere mu nda ibyara hatangiye gufatwa nk’ahantu hashya abaganga bashobora gukoreramo ibikorwa by’ubuvuzi mbere y’uko umwana avuka.
Mu myaka yashize, kuvura umwana ukiri mu nda ahanini byakorwaga hakoreshejwe imiti ihabwa umubyeyi cyangwa ibikorwa bito bikorwa hifashishijwe inshinge. Iterambere mu byuma bifata amashusho, ibikoresho bito byo kubaga, uburyo bwo gutera ikinya no gukurikirana umutima w’umwana ryatumye ibikorwa bikomeye bishoboka.
Belfort avuga ko spina bifida na gastroschisis bishobora kuba intangiriro. Mu gihe kiri imbere, yizera ko abaganga bashobora kugera ku rwego rwo gukorera umwana ukiri mu nda ibikorwa bimwe na bimwe byo gusana umutima cyangwa ibihaha.
Icyakora, inzobere zishimangira ko ibikorwa nk’ibi bigomba gukorerwa mu bigo bifite abaganga b’inzobere n’ibikoresho byo ku rwego rwo hejuru. Kubaga umwana ukiri mu nda bishobora guteza umubyeyi kuva amaraso, kwandura, kubyara igihe kitaragera cyangwa inda ibyara kugira ibindi bibazo. Ni yo mpamvu bikorwa gusa iyo inyungu zitezwe zishobora kuruta ibyago.
Ku muryango wa Maisie na Josh, iryo gerageza ryabahaye umusaruro bari bizeye. Theo, washoboraga gutangira ubuzima bwe abagwa inshuro nyinshi kandi amara ye yarangiritse, ubu akura nk’abandi bana. Inkuru ye igaragaza aho ubuvuzi bwo kubaga abana bakiri mu nda bugeze, ikanatanga icyizere ko hari ubundi bumuga abana bavukana bushobora kuzajya buvurwa mbere y’uko bagera ku Isi.
Ibitekerezo