Ese uruhande rumwe rw'ubwonko bw'umwana wawe ni runini cyane? Reka twige ku bijyanye na hemimegalencephaly!

Ese wigeze uhangayikishwa n'imiterere y'umutwe w'umwana wawe, cyangwa se n'uburyo ahora arwara ? Hari igihe hashobora kubaho indwara idakunze kugaragara inyuma y'ibi bintu. Hemimegalencephaly ni imwe muri izo ndwara. Nubwo izina rishobora kumvikana nk'irigoye, reka tubiganireho mu buryo bworoshye.

Hemimegalencephaly ni iki?

Mu magambo make, hemimegalencephaly ni igihe uruhande rumwe rw'ubwonko bw'umwana wawe (hemisphere yo mu bwonko) runini cyane kurusha urundi. Tekereza ubwonko bwacu nk'ikibyimba kinini gifite ibice bibiri, uruhande rw'ibumoso n'urw'iburyo. Muri iki kibazo, uruhande rumwe gusa nirwo rukura kuruta uko bikwiye. Hari igihe uku kwaguka gushobora kugarukira ku gice gito cy'urwo ruhande rw'ubwonko , cyangwa uruhande rwose rushobora kwaguka.

Iyo uruhande rumwe rw'ubwonko rubaye runini muri ubu buryo, izindi mpinduka zishobora kubaho mu bwonko. Urugero:

• Uturemangingo (Neurons) ni ubwoko bw'uturemangingo mu bwonko bwacu. Dushobora kuba tudatunganyije neza (cytoarchitecture) cyangwa urwego rwo hejuru rw'ubwonko rushobora kuba rutarakozwe neza (cortical dysplasia).
• Indwara ya corpus callosum yabuze cyangwa yangiritse: Ibi ni nk'ikiraro gihuza impande zombi z'ubwonko . Iyo ibuze cyangwa yangiritse, ibibazo bishobora kubaho.
• Ubwinshi bw'imiyoboro y'ubwonko yuzuye amazi (ventricles) ku ruhande rwafashwe n'indwara.

Kubera ko ibice by'ubwonko bitameze neza muri ubu buryo, indwara zo mu bwonko zishobora kugaragara kenshi. Ibi kandi tubyita igicuri . Akenshi, izi ndwara ziragoye kuzirwanya hakoreshejwe imiti isanzwe yo kurwanya indwara zo mu bwonko. Iyo indwara zo mu bwonko zidashobora gukemurwa n'imiti, abana benshi bagomba kubagwa ubwonko (kubagwa igicuri).

Ese hari ubwoko bw'ingenzi bwa hemimegalencephaly?

Yego, hari ubwoko bwinshi bw'ingenzi bw'iyi ndwara:

• Hemimegalencephaly yigenga: Ibi bigira ingaruka gusa ku gice cyo hanze cy'ubwonko bw'umwana (cerebral cortex). Nta rusobe rw'uruhu cyangwa izindi ngingo zibigiramo uruhare.
• Syndromic hemimegalencephaly: Ibi bigira ingaruka ku bwonko gusa, ahubwo binagira ku ruhu rw'umwana ndetse no ku zindi ngingo zimwe na zimwe. ArikoIbimenyetso by'uruhu bishobora kugaragara nyuma y'amezi cyangwa imyaka myinshi umwana avutse. Nanone, uruhande rumwe rw'umubiri w'umwana rushobora kuba runini kurusha urundi (hemihypertrophy).
• Hemimegalencephaly yose: Muri ibi, ubwonko bw'umwana ndetse rimwe na rimwe n'ubwonko burushaho kwiyongera. Ibi bishobora kubaho haba ukwabwo cyangwa se bikabaho mu buryo budasanzwe.

Ni ibihe bimenyetso by'iyi ndwara?

Ikimenyetso cya mbere ushobora kubona ni uko umwana wawe agira "imitsi cyangwa ibibyimba mu nda". Ibi akenshi biba ari ibibyimba by'ibanze. Ibi bivuze ko uruhande rumwe gusa rw'umubiri w'umwana rushobora kunyeganyega.

Izindi bimenyetso zishobora kugaragara harimo:

• Umutwe munini (Macrocephaly).
• Imiterere y'umutwe idahuje.
• Ingorane zo kugenda nko kugenda no kwiruka.
• Kubura ibinya n'intege nke ku ruhande rumwe rw'umubiri.
• Gutinda mu mikurire: Ibi bivuze gutinda mu kuvuga, gukina no kwiga mu buryo bujyanye n'imyaka yabo.
• Ubumuga bwo kutabona: Urugero, kimwe cya kabiri cy'uburebure bw'amaso burabura iyo urebye n'amaso yombi (hemianopia).

Ni iki gitera hemimegalencephaly?

Mu by’ukuri, abahanga mu bya siyansi ntibaramenya neza icyatera iyi ndwara. Bamwe bizera ko ari indwara iterwa n’impinduka mu miterere y’umubiri w’umwana. Ariko si iyo mu muryango. Ibyo bivuze ko ufite iyo ndwara kandi si ikintu uha umwana wawe.

Birashoboka cyane ko hafi mu cyumweru cya gatatu cyo gutwita, habaho impinduka zitunguranye, cyangwa zitunguranye, muri imwe mu ngirabuzimafatizo z'ingenzi mu mikurire y'ubwonko. Wibuke ko iyi ndwara idaterwa n'ikintu icyo ari cyo cyose wakoze mu gihe cyo gutwita. Iyi si ikosa ryawe cyangwa irya se.

Ni ibihe bintu bishobora gutera iyi ndwara?

Hemimegalencephaly ishobora kubaho hamwe n'izindi ndwara za genetiki. Ibi bivuze ko abana bafite izi ndwara baba bafite ibyago byinshi byo kurwara hemimegalencephaly:

• `Indwara ya Epidermal nevus syndrome`
• `Indwara ya Klippel-Trenaunay`
• ``McCune-Albright syndrome``
• "Neurofibromatosis Type 1 (NF1)"
• `Indwara ya CLOPES`
• `Indwara ya Proteus`
• `Hypomelanosis ya Ito`

Ni gute hemimegalencephaly ipimwa?

Kugira ngo amenye neza niba ari uko bimeze, muganga w'umwana wawe azabanza asuzume umwana wawe maze akubaze amateka y'ubuzima bw'umwana wawe. Hanyuma, bashobora gukora ibizamini bikurikira:

• Isuzuma rya MRI mu bwonko.
• Ikizamini cya EEG (Electroencephalogram). Iki gipimo cy'imikorere y'amashanyarazi y'ubwonko.

Bitewe n'ikoranabuhanga rigezweho ryo muri iki gihe, rimwe na rimwe birashoboka gusuzuma iyi ndwara umwana akiri mu nda ya nyina "igihe atwite." Ibi bikorwa hakoreshejwe uburyo bwa MRI bwo gusuzuma ubwonko bw'umwana "MRI y'umwana uri mu nda".

Ivurwa ite?

Intego nyamukuru yo kuvura hemimegalencephaly ni ukugenzura indwara zo mu mutwe. Izi ndwara zishobora gutangira mu bwana kandi akenshi zigorana kuzirwanya ukoresheje imiti (irinda imiti).

Iyi ndwara ishobora gutera indwara zitandukanye. Ni ngombwa kumenya ko indwara ikwirakwira mu bwana, cyane cyane iyo itangiye mu bwana, ishobora kugira ingaruka zikomeye ku mikurire y'umwana. Kurwara indwara idakurikijwe bishobora kwangiza cyane imikurire n'imikurire y'umwana, ndetse no kwangiza ubwonko bwe. Kubwibyo, ni ngombwa guhagarika indwara vuba bishoboka.

Kuvura indwara y'igicuri bitangirira ku miti igabanya ubukana bw'indwara. Hari abana bashobora kurwanya indwara y'igicuri ubuzima bwabo bwose bakoresheje iyi miti. Ariko benshi barwara igicuri kidakira imiti. Hanyuma hakorwa kubagwa byitwa hemispherectomy. Ibi bikubiyemo gukuraho igice cy'ubwonko bw'umwana cyagize ikibazo (cerebral cortex) cyangwa kugitandukanya n'ikindi gice cy'ubwonko.

Iyo ubu buvuzi bukozwe, rimwe na rimwe bwitwa "functional hemispherectomy." Muri ubu buvuzi, umuganga agabanya akanatandukanya ingingo n'imitsi bihuza uruhande rumwe rw'ubwonko bw'umwana n'urundi, ariko uruhande rw'ubwonko rwagutse cyane rushobora gusigara mu gahanga. Muri "anatomike cyangwa yuzuye hemispherectomy," uruhande rumwe rw'ubwonko ruba rutandukanijwe n'urundi ruhande, bigakuraho uruhande rudasanzwe rwose. Ubu buvuzi bugomba gukorwa n'umuganga w'imitsi ufite ubumenyi bwihariye mu kubaga igicuri.

Ese kubagwa kugira ngo bakuremo igice cy'ubwonko (hemisphereectomy) biragoye?

Mu by’ukuri, hemispherectomy ni ukubaga ubwonko bigoranye cyane. Hari impamvu nyinshi zituma gukora ubu bubaga bigorana kurushaho bitewe n’indwara ya hemimegalencephaly.

Icya mbere ni uko imiyoboro y'amaraso ikunze kuba mu buryo budasanzwe. Kubwibyo, biragoye kuyibona no kuyikata mu gihe cyo kubagwa. Ibi rimwe na rimwe bishobora gutera kuva amaraso menshi.

Byongeye kandi, kubera ko ubwonko bwose bw'umwana bufite imiterere idasanzwe, ibimenyetso umuganga akoresha kugira ngo amenye ibice bimwe na bimwe by'ubwonko akenshi ntibikunze kugaragara. Nanone, impinja n'abana bato bashobora gutakaza amaraso menshi muri iki gikorwa cyo kubaga. Ibi bigomba gukurikiranwa neza cyane kandi amaraso agomba gusimbuzwa uko bikenewe.

Kubwibyo, ni ngombwa cyane ko itsinda ry’abaganga rivura umwana wawe ari itsinda ry’abahanga kandi rifite uburambe muri ubu buvuzi. Ni byiza ko umwana wawe akorerwa ubu buvuzi mu bitaro bisanzwe bikora hemispherectomy ku bana bafite hemimegalencephaly kandi bifite uburambe bwinshi muri ubu buvuzi.

Ni iki giteganyijwe ku mwana ufite iyi ndwara?

Uburyo umwana wawe azakura biterwa ahanini n'uburyo umwana ashobora kugenzurwa neza ndetse n'uko ubwonko bwe bumeze nabi buri ku ruhande rumwe cyangwa ku mpande zombi.

Hemimegalencephaly ni indwara ifata buri mwana mu buryo butandukanye. Ibi bivuze ko ibisubizo bishobora gutandukana cyane bitewe n'umwana.

• Abana benshi bashobora kuba bafite ubumuga bwo mu mutwe .
• Bamwe mu bana bafite indwara yo kurwara cyane bashobora kuba bafite ubwenge busanzwe.
• Ariko ku bandi bana, ibintu nko kugenda, kuvuga, n'iterambere ry'ubwenge bishobora kugira ingaruka zikomeye.

Abana hafi ya bose bafite hemimegalencephaly bagira intege nke ku ruhande rumwe rw'umubiri (hemiparesis) . Ubu ni ubwoko bwa cerebral palsy. Bamwe mu bana bashobora kugira intege nke nke, abandi bashobora kugira intege nke zikomeye. Bamwe mu bana bashobora kugira indwara yitwa homonymous hemianopsia, aho kimwe cya kabiri cy'ubushobozi bwabo bwo kureba kiba cyatakaye. Abana benshi bashobora kugenda no kuvuga, ariko si abana bose bashobora kubikora. Hari abana bakeneye uburyo bwihariye bwo kubagaburira, abandi bashobora kurya bisanzwe.

Ubushakashatsi buherutse gukorwa bwagaragaje ko nyuma yo kubagwa:

• Kumera nabi kwahagaze burundu ku bana 68%.
• 43% by'abana bari bafite ubwenge busanzwe cyangwa budafite ubushobozi bwo gutekereza neza.
• Abana 26% bashoboye kuvuga mu buryo bujyanye n'imyaka yabo.
• Abana 21% bashoboye gusoma ku rwego ruhagije.

Ese hemimegalencephaly ishobora kwirindwa?

Kubera ko abahanga mu bya siyansi bataramenya neza icyatera iki kibazo, nta buryo bwo kukirinda buhari.

Ni gute wakwita ku mwana ufite iyi ndwara?

Niba umwana wawe afite ikibazo cya Hemimegalencephaly, azaba afiteHakenewe itsinda rinini ry’abaganga. Hamwe n’itsinda ry’abaganga ry’umwana wawe, mushobora gutegura gahunda ijyanye n’ibyo umwana wawe akeneye. Itsinda ry’abaganga ry’umwana wawe rishobora kuba rigizwe na:

• Abaganga b'abana
• Abaganga b'indwara z'imitsi
• Abaganga b'imitsi
• Impuguke mu iterambere
• Abavuzi b'imivugire, abavuzi b'akazi, n'abavuzi b'imitsi
• Abandi batanga serivisi z'ubuvuzi.

Ni ibihe bibazo ugomba kubaza muganga w'umwana wawe?

Niba umwana wawe asanzwe afite hemimegalencephaly, ushobora kubaza muganga ibi bibazo:

• Ni ubuhe bwoko bwa hemimegalencephaly umwana wanjye afite?
• Ese umwana wanjye afite izindi ndwara?
• Ni ubuhe buryo bwiza bwo kuvura?
• Umwana wanjye abona iki?
• Ni iki twakora kugira ngo tugabanye ibimenyetso bye?

Mama na Papa, nimugire ubutwari gato! (Ubutumwa bwo kujyana mu rugo)

Tuzi ko kubona umwana wawe arwaye igicuri, cyangwa kumenya ko afite indwara nk'iya Hemimegalencephaly, bishobora kugutera ubwoba cyane no kubabara umutima. Ariko ibuka ko utari wenyine. Itsinda ry'abaganga bavura umwana wawe riri kumwe nawe mu ntambwe zose.

Niba uhanganye n'iki kibazo, baza muganga wawe ku byerekeye amatsinda y'abaterankunga afasha imiryango y'abana bafite hemimegalencephaly. Kuganira n'ababyeyi b'abana bafite iki kibazo bishobora kugufasha kugabanya ubwoba bwawe no kwemera ikibazo cy'umwana wawe. Bashobora kukubera isoko ikomeye y'imbaraga mu gihe umwana wawe yiga kubana n'iki kibazo.

Hemimegalencephaly , imikurire idasanzwe y'ubwonko, igicuri cy'abana, kubagwa k'ubwonko, gutinda mu mikurire, imiterere y'uturemangingo, indwara z'imitsi