Urashaka kumenya ibyerekeye Amniotic Band Syndrome, indwara iteje akaga aho imishumi ipfukirana umwana wawe?

Uhora utekereza ku mibereho y'umwana wawe mu gihe utwite, si byo se? Hari igihe iyo ubonye ikintu gito mu gihe cyo gupimwa, wumva ufite ubwoba bwinshi. Ni byo ababyeyi benshi bahangayika, ariko iyo ubibwiwe neza, iyi ndwara yitwa amniotic band syndrome irashobora gukemuka. Reka tubiganireho mu buryo bworoshye, mu buryo ushobora gusobanukirwa.

Indwara yo mu rukenyerero rwa Amniotic Band ni iki?

Mu magambo make, ibi bibaho iyo udutsi duto tw’amazi tuva mu gasanduku k’umwana (twita "Amniotic Sac") kazengurutse umubiri w’umwana. Tekereza ko umwana ameze nk’ibumba ryuzuye amazi. Iyo agace gato k’umubiri kangiritse mu buryo ubwo aribwo bwose, gashobora gucikamo ibice bisa n’umugozi cyangwa nk’umugozi maze kakarembera mu gasanduku k’umwana. Ibi ni byo twita "Amniotic Bands". Utu dutsi duto, nk’umupira w’umugozi, dushobora gupfukirana ukuboko, ukuguru, urutoki, cyangwa ikindi gice cy’umubiri w’umwana uri mu nda. Iyo utwo dutsi dupfukiranye cyane, amaraso ajya muri icyo gice aragabanuka, rimwe na rimwe ndetse agahagarara burundu. Icyo gice ntigikura neza. Hari igihe ibi bishobora kugira ingaruka ku ngingo z’imbere z’umwana ndetse no ku mugongo. Ibi bishobora gutera ubusembwa bw’umwana avuka (Congenital Disorders) kandi, mu bihe bikomeye, gucibwamo ibice. Uburemere bw’ikibazo buterwa n’uburyo udutsi dupfundikiye neza n’aho dupfundikiye ku mubiri w’umwana. Hari abana bashobora kugira uduce duto tw’uruhu duto cyane igihe bavuka. Ariko, hari abana bashobora kuvuka badafite amaboko, amaguru, cyangwa intoki. Iyo utu duce duto tw’uruhu duhagaritse amaraso y’umwana ava mu nyababyeyi, bishobora gushyira ubuzima bwe mu kaga. Hari igihe abaganga bashobora gusuzuma ikibazo bakoresheje ultrasound scan mu gihe batwite. Ariko, akenshi ibi ntibyemezwa kugeza umwana avutse. Iyi ndwara ntabwo ikunze kugaragara cyane. Ibaho ku bana 1 mu bana 1,200 kugeza ku 15,000 bavutse ari bazima. Izwi kandi nka:

• Urukurikirane rw'umukandara wa amniotic
• Indwara yo kugabanya umugozi/impeta
• Inzu igabanya urushinge rw'amaraso mu nda ya amniotic
• Imikandara/Impeta zo Kugabanya Ingufu z'Ababyeyi
• ADAM Complex `(ADAM Complex - Ubusembwa bwa amniotic/ Adhesions / Gucikamo ibice)`
• Indwara y'abajya mu muhanda

Ni ibihe bimenyetso by'ibi? Wabimenya ute?

Ibimenyetso by'iyi ndwara biterwa ahanini n'aho umugozi ufatanye n'umubiri w'umwana n'uburyo ufatanye cyane.Hafi 80% by'abarwayi bagira ingaruka ku maboko no ku maguru. Ariko iyi migozi ishobora no gufungana mu mutwe, mu ijosi no mu nda. Hari igihe ibi biba atari bikomeye cyane. Bigabanya gusa amaraso atembera ku ruhu. Hanyuma iyo umwana avutse, hashobora kubaho ibintu nk'impeta zo kugabanya imiterere mu ruhu, cyangwa ubumuga buto mu ngingo. Ariko rimwe na rimwe iyi migozi ifungana cyane ku buryo amaraso atembera muri urwo rugingo cyangwa igice cy'umubiri acika burundu. Hanyuma icyo gice gishobora kubura, amaraso akabura, kandi rimwe na rimwe hashobora kubaho ingorane zishobora gushyira ubuzima mu kaga. Ibindi bimenyetso bishobora kugaragara muri iki kibazo ni:

• Kuvuka nta maboko, amaguru, cyangwa intoki.
• Intoki zifatanye (Syndactyly). Hashobora kubaho uruhu hagati y'intoki, nk'urw'igishuhe.
• Amaguru ni magufi kandi ntabwo akuze neza.
• Kubyimba aho imishumi ifatanye.
• Ikirenge cy'ikirenge .
• Umunwa upfutse n'akanwa gapfutse .
• Ubusembwa bw'amagufwa, nka scoliosis.
• Choanal Atresia (gukura kw'amazuru mu buryo butuzuye). Ibi bishobora kugora umwana guhumeka.
• Amaso mato cyane cyangwa adakuze neza (Microphthalmia).

Ni izihe ngorane ibi bishobora gutera?

Indwara ya amniotic band syndrome ishobora gutera ingorane nyinshi, zimwe muri zo zishobora kubaho ubuzima bwose. Ingorane zimwe na zimwe ni zikomeye cyane ndetse zishobora no gushyira ubuzima mu kaga. Urugero:

• Umwobo mu gahanga (Encephalocele). Muri iki gihe, igice cy'ubwonko gishobora gusohoka mu gahanga.
• Umwobo cyangwa ubumuga mu nkuta zo mu nda cyangwa mu gituza.
• Kwangirika kw'ingingo z'ingenzi nk'iz'igifu cyangwa iz'imyakura .
• Ingorane zishobora kubaho iyo izi nsinga zifashe mu mukondo w'inkondo zigahagarika amaraso y'umwana.

Iyi ndwara ikunze gutuma umwana avuka imburagihe. Kuvuka imburagihe bifite ibyago byabyo. Hari kandi ibyago byo gukuramo inda cyangwa kubyara umwana wapfuye. Abana bafite iyi ndwara bashobora gukenera ubuvuzi bw'umubiri n'ubuvuzi bw'akazi mu gihe cy'imyaka myinshi, cyangwa kugeza igihe bazamenyera imbogamizi zo kubura amaguru cyangwa gukura nabi.

Kuki habaho indwara ya amniotic band syndrome (ABS)? Ni izihe mpamvu?

Ubushakashatsi bwinshi bwerekana ko nta mpamvu isobanutse neza kandi yihariye ihari.Bikekwa ko ahanini biterwa no kwangirika kw'imbere mu gikapu cy'amazi (agafuka k'amazi gakikije umwana). Zimwe mu mpamvu zishobora gutuma aka gakapu k'amazi kangirika harimo:

• Ibizamini bimwe na bimwe bikorwa mu gihe cyo gutwita , nka Chorionic Villus Sampling (CVS) cyangwa Amniocentesis. Ibi bisaba gutobora agapfunyika k'amazi ukoresheje urushinge hanyuma ugafata icyitegererezo cy'amazi cyangwa ingirangingo ku mwana. Ariko, ni gake cyane ko ibi bizamini bigira ingaruka mbi.
• Kubaga umwana uri mu nda: Ibi bikorwa gusa mu bihe bikomeye cyane, bishobora gushyira ubuzima mu kaga.

Ariko, mu bihe bimwe na bimwe by’indwara ya amniotic band syndrome, agapfunyika k’amazi ntabwo kangirika na gato. Kubwibyo, abahanga bamwe bemeza ko ibi biterwa n’ikibazo cy’inzira y’amaraso mu mubiri w’umwana. Birashoboka ko bamwe mu bana bashobora kugira amaraso adatembera neza bitewe n’ingaruka za genetiki.

Ni nde uri mu kaga gakomeye ko kugira iyi ndwara?

Amahirwe yawe yo kubyara umwana ufite iyi ndwara ashobora kuba menshi gato niba:

• Niba ufite izindi ngorane mu gihe utwite.
• Niba ufite indwara yitwa `(Vascular Ehlers-Danlos Syndrome)`.
• Niba unywa itabi utwite.
• Niba ukoresha imiti utahawe na muganga, cyangwa niba ufata imiti imwe n'imwe utwite.

Ni gute wasuzuma ibi neza neza?

Muganga akunze kubona iyi ndwara nyuma y'uko umwana avutse, iyo asuzuma umwana. Ariko rimwe na rimwe, ibimenyetso byayo bishobora kugaragara mu gihe cyo gupima umwana mu gihe atwite. Isuzuma rishobora kugaragaza imirongo iterwa n'imitsi ifunganye. Ariko akenshi, isuzuma rigaragaza ko amaguru n'amaboko byabuze, cyangwa ko ibice by'umubiri bitarakura neza.

Ibi bishobora kugaragara vuba gute kuri scan?

Ibimenyetso bya amniotic band syndrome rimwe na rimwe bishobora kugaragara mu byumweru 12 utwite, ariko biragoye cyane. Akenshi, muganga wawe azabona ibimenyetso byabyo mu gihe cyo gupima imiterere y'umubiri, bigakorwa mu byumweru 20. Niba hari gushidikanya, muganga wawe ashobora gutegeka ibindi bipimo, nka MRI (Magnetic Resonance Imaging).

Ni ubuhe buryo bwo kuvura ibi?

Ubusanzwe ubuvuzi bukorwa nyuma yuko umwana wawe avutse. Ubwoko bw'ubuvuzi buterwa n'aho kaseti yari iri n'uburyo yari ifunze. Mu bihe byoroheje, gukurikiranwa hafi na muganga ni byo byonyine bikenewe.Ariko iyo ikibazo gikomeye ku buryo cyagira ingaruka ku bwenge bw'umwana, kigomba kuvurwa vuba. Hari igihe kubagwa bishobora gukosora ibibazo nko kubabara ikirenge, iminwa n'akanwa, ndetse no gukoresha uburyo bwo guhuza ibitsina. Impinja n'abana bafite amaguru yabuze cyangwa magufi bashobora kungukirwa n'inzobere. Ubuvuzi bw'umubiri n'ubuvuzi bw'akazi bishobora kubafasha gukoresha amaguru y'ubukorano no kunoza imikorere yabo muri rusange.

Ni gake cyane, umuganga ashobora gukora igikorwa cyitwa fetoscopy kugira ngo akureho agasabo k'imyororokere umwana akiri mu nda. Intego y'ubu buryo bwo kubaga ni ukurekura agasabo k'imyororokere no gukumira ko kangirika kurushaho. Ariko, ubu buryo bushobora guteza ingaruka zikomeye ku buzima bw'umubyeyi n'umwana. Ibi akenshi bikorwa gusa iyo agasabo k'imyororokere gakomeye ku buryo kashyira ubuzima mu kaga.

Ese umwana ashobora kubaho afite iki kibazo?

Yego, abana benshi babana n'iki kibazo. Kuba bararokotse cyangwa batakiriho biterwa n'ibintu nk'aho kaseti yari iri n'uburyo yari ifunze.

Ese izi mpande zombi zo mu nda zigiye kuvaho?

Oya. Kenshi na kenshi , inkovu cyangwa uduheri biterwa n'uduheri two mu nda ntibishira. Ibi biterwa n'uburyo uduheri twinjiye mu ruhu. Baza muganga wawe uburyo bushoboka bwo kuvura ubwo bwoko bw'inkovu.

Ese hari uburyo bwo gukumira ibi?

Mu by’ukuri nta buryo bwihariye bwo kwirinda indwara ya amniotic band syndrome. Abaganga bemeza ko akenshi bibaho ku buryo butunguranye, nta mpamvu iyo ari yo yose.

Ni iki twatekereza kuri iki kibazo kiri imbere? (Icyizere)

Ku bana bafite ABS yoroheje, icyerekezo cyabo ni cyiza. Abana bavukanye ubumuga bw'ingingo akenshi bamenyera neza imikorere y'insimburangingo na gahunda zo kuvura. Ariko, abana bafite ingingo zangiritse cyane kandi amaraso adatembera neza mu mukondo w'inkondo akenshi ntibaba bakiriho. Abana 1 kuri 70 bavuka bapfuye baterwa n'indwara ya amniotic band syndrome.

Wakora iki niba umwana wawe afite ikibazo cyo kugabanya umubyimba mu nda?

Abana bafite iyi ndwara bakeneye ubufasha bukomeye no kwitabwaho igihe kirekire.Ababyeyi, abagize umuryango, n'abaganga bose bagomba gukorana kugira ngo bafashe umwana wawe kumenyera impinduka mu miterere n'ibibazo by'imikorere y'iyi ndwara. Umwana wawe ashobora gukenera kubonana n'inzobere zitandukanye. Urugero, abaganga b'amagufwa n'abaganga b'imitsi (bitewe n'ibice by'umubiri byagizweho ingaruka). Abagize umuryango n'abavandimwe bashobora kandi kubona ubufasha mu matsinda y'ubufasha ku miryango ifite abana bafite iyi ndwara. Iyo umenye ko umwana wawe afite indwara ya amniotic band syndrome, ushobora kugira ibibazo byinshi n'ubwoba. Mbere na mbere, ibuka ko itsinda ry'abaganga bawe ririho kugira ngo rigufashe wowe n'umwana wawe, kugira ngo rikwitaho neza. Imiterere nyayo y'uburwayi bwawe izaterwa n'uburyo imigozi ifunganye n'aho iri. Ibi bishobora gusobanura ko uzakenera gupimwa kenshi mu gihe utwite. Cyangwa ushobora gukenera kubagwa nyuma y'uko umwana avutse, kuvurwa igihe kirekire, cyangwa gukoresha amaguru y'ubukorano kugira ngo wongere imikorere. Ntutinye kuvugana na muganga wawe wita ku bana batwite cyangwa itsinda ry'abaganga b'umwana wawe ku bijyanye n'iki kibazo n'uko kizagira ingaruka ku muryango wawe.

Ubutumwa bwa nyuma bwo kujyana mu rugo

Indwara yo mu mutwe iterwa n'umugongo (Amniotic Band Syndrome) iteye ubwoba cyane, ariko ni ngombwa cyane kubimenya.

• Iki ni ikibazo kidasanzwe cyane.
• Akenshi, ibi bibaho ku buryo butunguranye, bivuze ko atari ikosa ry'umuntu uwo ari we wese.
• Abana benshi bavukanye iki kibazo babaho neza iyo bitabwaho neza kandi bagahabwa ubufasha n'umuryango.
• Ibi nibishobora kumenyekana mu gihe utwite, bizafasha gutegura uburyo umwana azavurwa.
• Niba ufite gushidikanya cyangwa ibibazo, menya neza ko uganira na muganga wawe. Azaguha amakuru yose n'ubufasha ukeneye. Ntugahangayike, nturi wenyine.