Ingabe uhlangothi olulodwa lobuso bomntwana wakho luncane kunolunye? Ake sixoxe nge-Hemifacial Microsomia!

Wake waphawula ukuthi ngezinye izikhathi uhlangothi olulodwa lobuso bomntwana luhlukile kancane kolunye, mhlawumbe luhlukile kancane? Noma indlebe isendaweni ehlukile kancane, noma isihlathi asibonakali sakhiwe kahle. Kuvamile ukuthi umzali azizwe esaba futhi ekhathazekile kancane uma ebona into efana nale. Yileso simo esizokhuluma ngaso namuhla, esibizwa ngokuthi i-Hemifacial Microsomia. Ungakhathazeki, ake sixoxe ngalokhu ngokuningiliziwe.

Kuyini i-Hemifacial Microsomia?

Kalula nje, i-Hemifacial Microsomia yisimo sokuzalwa . Kwenzeka lapho izingxenye zohlangothi olulodwa lobuso bomntwana, njengezindlebe, umlomo, kanye nethambo lomhlathi, zingakhuli kahle uma kuqhathaniswa nolunye uhlangothi. Cabanga ngakho njengento encane 'engekho' ohlangothini olulodwa lapho ubuso bakheka. Lokhu ngezinye izikhathi kubizwa ngokuthi i-Craniofacial Microsomia.

Esikhathini esiningi, lokhu kuthinta uhlangothi olulodwa lobuso kuphela . Kodwa-ke, akuvamile kakhulu, lesi simo singathinta izinhlangothi zombili zobuso. Kuleso simo, sibiza ngokuthi i-Bilateral Hemifacial Microsomia.

Lesi simo singathinta izingxenye ezilandelayo zobuso:

• Amathambo esifuba
• Amehlo
• Ingxenye engaphandle yendlebe kanye nendlebe ephakathi
• Izinzwa zobuso (lezi yizona ezilawula ukubukeka kobuso bethu nokuhleka kwethu)
• I-Mandible
• Imisipha yobuso
• Intamo
• Ugebhezi
• Amazinyo

Nakuba kungavamile kakhulu, ngezinye izikhathi i-Hemifacial Microsomia ingahambisana nezinkinga kwezinye izinhlelo zomzimba, njengenhliziyo, izinso, amathambo esifuba (izimbambo), kanye nomgogodla.

Ngokwezibalo, lesi simo sithinta cishe ingane eyodwa kwezingu-3,000 kuya kwezingu-5,600 ezizalwayo. Kuyisifo sesibili esivame kakhulu sokuzalwa ebusweni, ngemuva kwe-cleft lip noma i-cleft palate.

Zingaba yini izimpawu?

Izimpawu zalesi simo zingahluka kakhulu kumuntu nomuntu. Abanye abantu bathinteka kancane , kanti abanye bathinteka kakhulu. Lokhu kusho ukuthi uhlobo kanye nobunzima balezi zimpawu kuyahlukahluka kuye ngokuthi indawo yobuso ikhule kangakanani.

Lezi ezinye zezimpawu ezivame kakhulu:

• I-Microtia: Lesi yisimo lapho indlebe incane, ingaqondile kahle, noma inomumo ongavamile. Ingase ingabi khona nhlobo.
• I-Hypodontia: Amanye amazinyo awaveli. Okusho ukuthi, amazinyo awakhuli kusukela ekuqaleni.
• Ukukhubazeka kobuso ngenxa yobuthakathaka bemizwa yobuso: Kungaba nzima ukwenza izinto ezifana nokuvala iso kahle ohlangothini oluthintekile, ukumamatheka, noma ukububula.
• Amathegi esikhumba:Lezi zingcezu zesikhumba ezengeziwe zivame ukubonakala eduze kwendlebe, ngezinye izikhathi esihlathini.
• Ubuncane belihlo elilodwa (i-Microphthalmia): Iso elithintekile lingase libonakale lincane uma liqhathaniswa nelinye iso. Inhlamvu yeso nayo ingaba ncane.
• Ukumamatheka okungalingani: Ngenxa yokuthi imisipha nemizwa akukakhuli kahle, izinhlangothi zombili zobuso zingase zingalingani lapho kumamatheka.

Lezi yizimpawu eziyinhloko ezibonakala. Kodwa njengoba ngishilo ngaphambili, akuwona wonke umuntu onazo zonke lezi zimpawu, futhi ubukhulu bezimpawu ezikhona buyahlukahluka kakhulu.

Kungani lokhu kwenzeka? Yiziphi izizathu?

Eqinisweni, ochwepheshe abakayazi imbangela eqondile ye-Hemifacial Microsomia. Bakholelwa ukuthi lesi simo sibangelwa yinto ephazamisa ukukhula kombungu phakathi namasonto ayisithupha okuqala ngemva kokukhulelwa (leyo inyanga yokuqala nengxenye yokukhulelwa). Khumbula, kungesikhathi salawo masonto ambalwa okuqala lapho izingxenye zobuso bomntwana ziqala ukwakheka khona. Yilapho into ethile, mhlawumbe ukuntuleka kwegazi okuncane, ingahamba kabi.

Abacwaningi abakakatholi noma yiziphi izakhi zofuzo ezithile noma izici zemvelo ezihlotshaniswa nalokhu. Lokho kusho ukuthi ungacabangi ukuthi kungenxa yento eyenziwe noma engenziwanga ngumama ngesikhathi sokukhulelwa. Lokhu akulona iphutha lomuntu.

Kodwa-ke, njengoba eminye imindeni inabantu abangaphezu koyedwa abanalesi simo, basola ukuthi kungenzeka ukuthi siwufuzo . Kodwa ucwaningo alwanele ukuqinisekisa lokho okwamanje.

Yiziphi izinkinga ezingaba khona ngenxa yalesi simo?

Ngaphezu kwezinguquko zobuso, izingane ezine-Hemifacial Microsomia zingase zibe nezinye izinkinga. Kuhle ukuqaphela nalezi:

• Ukulahlekelwa ukuzwa: Le nkinga ingenzeka, ikakhulukazi uma indlebe nomsele wendlebe kungakhiwanga kahle. Ngezinye izikhathi, ukuzwa kungase kulahleke ngokuphelele ohlangothini olulodwa.
• Ukungondleki kahle ngenxa yobunzima bokudla: Uma umhlathi ongezansi ungalingani kahle noma kunezinkinga ngamazinyo, kungaba nzima ngengane ukuncela, ukudla ukudla kamuva, nokuhlafuna. Lokhu kungaholela ekunciphiseni isisindo nasekukhuleni okulinganiselwe.
• Izimo zempilo yomlomo: Ukugaya amazinyo, amazinyo agobile, kanye nemigodi kuvamile.
• Ukuphazamiseka kokukhuluma: Kungaba nzima ukuphimisa amagama nokukhuluma ngokucacile ngenxa yezinkinga zemisipha yobuso, umhlathi, kanye nolwanga.
• Izinkinga zokubona: Ukubona kungathinteka yizinto ezifana ne-microphthalmia (iso elincane) kanye nezinye izinkinga zamehlo.
• Izinkinga zokuphefumula:Ikakhulukazi uma umhlathi ongezansi umncane kakhulu futhi izikhala zamakhala zincane, kungase kube nobunzima bokuphefumula (i-sleep apnea) ngesikhathi ulele.

Kubaluleke kakhulu ukuqaphela lezi zinto nokufuna iseluleko sezokwelapha kanye nokwelashwa okudingekayo.

Ukuthola kanjani lokhu?

Odokotela bavame ukwenza ukuhlolwa okujulile komzimba wengane kuqala. Ezimweni eziningi, lesi simo singatholakala ngokushesha nje lapho ingane izalwa, ngoba izinguquko zobuso, ikakhulukazi ezindlebeni nasesilevini, zibonakala ngokucacile.

Kodwa-ke, kwezinye izimo, ukuhlolwa kwe-ultrasound ngaphambi kokubeletha noma i-MRI (Magnetic Resonance Imaging) okwenziwa ngaphambi kokuba umntwana azalwe, okungukuthi, ngesikhathi esesesibelethweni sikanina, kunganikeza inkomba ngalesi simo. Kodwa-ke, lokhu akwenzeki njalo.

Ukuze kuqinisekiswe ukuxilongwa kwe-Hemifacial Microsomia, ukuze kutholakale ubukhulu bomonakalo, futhi kutholakale ukuthi yiziphi izingxenye zobuchopho ezithintekile, odokotela bangenza ezinye izivivinyo zezithombe . Isibonelo:

• Ama-X-ray: Hlola isimo samathambo obuso.
• Ukuskena kwe-CT (i-Computed Tomography scans): Lokhu kungaveza isithombe esicacile nesinobukhulu obuthathu samathambo nezicubu ezithambile zobuso. Lokhu kuyasiza kakhulu ekuhleleni ukuhlinzwa.

Lezi zivivinyo zinganikeza isithombe esicacile samathambo obuso, imisipha, kanye nemizwa, okuwusizo olukhulu ekuhleleni ukwelashwa.

Iphathwa kanjani?

Ukwelashwa kwalesi simo kuncike ekutheni siyithinta kabi kangakanani ingane. Izingane ezine-hemifacial microsomia zivame ukudinga ukuhlinzwa ukuze kulungiswe noma kwakhiwe kabusha izingxenye zobuso.

Ukuthi lokhu kuhlinzwa kuyini nokuthi kwenziwa nini kuyahlukahluka kuye ngengane, kuye ngezidingo zengane, ubudala, kanye nezingxenye ezithintekile.

Kubaluleke kakhulu ukuthi lapho umntwana esencane, okungukuthi, esengumntwana , umgomo oyinhloko wokwelashwa ukusiza umntwana ukuba aphefumule futhi ondle kahle . Lezi yizinto eziyisisekelo.

Ngemuva kwalokho, njengoba ingane ikhula, okungukuthi, ngesikhathi sobuntwana kanye nokuthomba , umgomo wokwelashwa ukuthuthukisa ukusebenza kobuso kanye nokubukeka . Okungukuthi, ukuthuthukisa ukulingana kobuso kanye nokubukeka ngenkathi kwenza izinto ezinjengokukhuluma, ukudla, nokumomotheka zibe lula.

Ezimweni eziningi, lokhu kuhlinzwa akukwazi ukwenziwa ngesikhathi esisodwa. Njengoba ingane ikhula, amathambo obuso ayakhula futhi inqubo yenziwa ngezigaba eziningi.Lezi yizinto okumele zenziwe. Ezinye izinhlinzeko kufanele zihlehliswe njengoba ingane ikhula. Lokhu kuyinto ethatha isikhathi futhi edinga isineke.

Ukwelashwa ngokuhlinzwa

Izinqubo zokuhlinzwa ze-Hemifacial Microsomia zingafaka okulandelayo. Lokhu kwenziwa yithimba lodokotela abangochwepheshe:

• Ukuhlinzwa kwendlebe, impumulo nomphimbo (ukuhlinzwa kwe-ENT): ikakhulukazi ukwakhiwa kabusha kwendlebe kanye nokufakelwa kokuzwa.
• Ukuhlinzwa kobuso okwenziwa ngepulasitiki kanye nokwakha kabusha: Buyisela ukulingana kobuso kanye nokubukeka. Ukufakelwa kwamafutha noma ezinye izicubu ezifakwe ezindaweni lapho izicubu ezithambile zingekho khona.
• Ukuhlinzwa Kwamehlo / Ukuhlinzwa Kwamehlo: Uma amehlo emancane noma kunezinkinga ngamajwabu amehlo, walungise.
• Ukuhlinzwa kwe-Maxillofacial / Ukuhlinzwa kwe-Orthognathic: Ukulungisa ubude kanye nendawo yomhlathi ongezansi, umhlathi ongaphezulu, amathambo ezihlathi, njll. Ngezinye izikhathi kusetshenziswa amasu okuphazamisa i-osteogenesis.
• Ukuhlinzwa ngomlomo: Ukukhishwa kwamazinyo uma ekhishwe, ukususwa kwamazinyo engeziwe.

Konke lokhu kwenzelwa ukusiza ingane ukuthi iphile ngendlela evamile ngangokunokwenzeka.

Ukuhlinzwa okwenziwa ezinsaneni ezisanda kuzalwa

Uma umntwana osanda kuzalwa enobunzima bokuphefumula noma engakwazi ukumunca , odokotela bangase baqale ukwelashwa ngokushesha nje lapho umntwana ezalwa. Lezi zingaba izindlela zokusindisa impilo.

Kunezindlela ezimbili ezivamile ezingenziwa ngokushesha ngemva kokuzalwa komntwana:

• I-Tracheostomy: Lokhu kuhilela ukwenza i-incision encane entanyeni yengane kanye nomphimbo womoya bese kufakwa ipayipi ukuze limsize aphefumule. Lokhu kwenziwa uma indlela yokuphefumula ivaliwe.
• Ukuncelisa ngepayipi (i-Nasogastric tube noma i-Gastrostomy tube): Uma umntwana engakwazi ukuncela yedwa, kusetshenziswa ipayipi ukuhlinzeka ngokudla okunempilo. Lokhu kungaba ipayipi elidlula ekhaleni liye esiswini (i-NG tube), noma ipayipi eliya ngqo esiswini (i-G-tube).

Ukwelashwa okungekona ukuhlinzwa

Ngaphezu kokuhlinzwa, odokotela bangase batuse nokwelashwa okungeyona eyokuhlinzwa okufana nalokhu. Lokhu kubaluleke kakhulu ekuthuthukiseni ikhwalithi yokuphila kwengane:

• Ama-braces kanye nezinye izinto zokulungisa amazinyo: Lokhu kusetshenziselwa ukulungisa indawo yemihlathi uma amazinyo edonswa.
• Izinsiza zokuzwa: Uma unenkinga yokuzwa, kungadingeka usebenzise izimila ze-cochlear noma izinsiza zokuzwa eziboshwe ngethambo (BAHA).
• Ukwelashwa ngenkulumo:Uma kunzima ukugwinya, uma kunzima ukukhuluma, basize. Lokhu kusiza ukuphimisela amagama ngokucacile nokuqinisa imisipha yobuso.

Zonke lezi zinto ziyahlangana ukuze zenze impilo yengane ibe lula. Lokhu kudinga ukwesekwa ngabantu abaningi, okuhlanganisa odokotela, odokotela abahlinzayo, odokotela bamazinyo, abelaphi bezinkulumo kanye nodokotela bemisindo.

Ingabe i-Hemifacial Microsomia ingavinjelwa?

Ngeshwa, lesi simo asinakuvinjelwa . Ngoba, njengoba ngishilo ngaphambili, abacwaningi abakazi kahle ukuthi yini ebangela lesi simo. Nakuba kusolwa ukuthi kungase kube nokuxhumana kwezakhi zofuzo, nalokho akukatholakali ngokuqinisekile.

Kubaluleke kakhulu ukuqonda ukuthi uma ingane yakho ine-Hemifacial Microsomia, akungenxa yokuthile okwenzile noma ongakwenzanga ngesikhathi sokukhulelwa . Ungazizwa kabi ngakho, futhi ungazibeki icala.

Uyini umbono ngalesi simo?

Ezimweni eziningi, lesi simo asikunciphisi isikhathi sokuphila kwengane . Lokhu kusho ukuthi ingane enalesi simo ingaphila isikhathi sokuphila esijwayelekile, njengengane engenaso.

Kodwa-ke, i-Hemifacial Microsomia ingathinta ikhwalithi yempilo yengane. Njengoba izingane zikhula, kufanele zibhekane nezinselele ezihambisana nokwazi ukuthi zibukeka zihlukile kwabanye.

Ngisho noma ukuhlinzwa kuphumelele, laba bantwana bangase babe nobunzima ngezinto abanye abantwana abangazenza kalula, njengokudla, ukukhuluma, nokulala. Ngakho-ke kudingeka siqaphele nalokho futhi.

Ngingayinakekela kanjani ingane yami?

Izingane ezine-Hemifacial Microsomia zidinga ukunakekelwa kwezokwelapha okuqhubekayo, okungase kuhlanganise nokuhlinzwa okuningi. Kodwa-ke, ngesikhathi zifika ebudaleni, zingase zingasadingi ukuhlinzwa.

Kodwa-ke, kungadingeka ukulandelwa kwesikhathi eside ukuze kubonwe ukuthi izinkinga ziyabuya yini noma ukuthi izinkinga ezikhona ziba zimbi kakhulu ngokuhamba kwesikhathi. Isibonelo, izinto ezifana nezinsiza zokuzwa kanye nokufakelwa kungadingeka zilungiswe ngezikhathi ezithile. Impilo yamazinyo nayo kufanele inakekelwe njalo.

Njengezinselele zomzimba, imiphumela yengqondo yokuba ngohlukile ingathinta impilo yemizwa yengane. Ngakho-ke, kubalulekile ukuthi ingane ithole ukwelulekwa ukuze imsize athuthukise amasu okubhekana nesimo.

Njengomzali, ngiyaqonda ukuthi ufuna wonke umuntu abone ingane yakho ngendlela efanayo nawe.Kuvamile ukuthi izingane zizizwe zesaba njengoba zikhula futhi ziqala isikole. Ngezinye izikhathi izingane, ikakhulukazi lezo ezizizwa zihlukile kuzo, zingaba nonya futhi zihlekise ngazo.

Uma nje ingane yakho isikhule ngokwanele ukuqonda, khuluma nayo ngokukhululekile ngesimo sayo . Ukwenza lolu hlobo lwengxoxo lube yinto evamile ngeke nje inike amandla, kodwa futhi kuzoyisiza iqonde ukuthi ukuhlukahluka kobuso bayo akuchazi ukuthi ingubani.

Ukuhlinzwa kungalungisa izici eziningi zomzimba ze-Hemifacial Microsomia. Ngaphezu kwalokho, ukwelashwa ngenkulumo kungasiza ingane yakho ifunde ukuveza imizwa yayo nokusebenzisana kahle nabanye emphakathini. Cela udokotela wakho ulwazi olwengeziwe kanye nosizo. Bakhona ukukusiza.

Uyini umehluko phakathi kwe-Hemifacial Microsomia kanye ne-Goldenhar Syndrome?

I-Goldenhar Syndrome iyisimo esingavamile sokuzalwa naso. Sibizwa nangokuthi i-Oculoauriculovertebral spectrum (OAVS).

I-Hemifacial Microsomia ingaba yisici se-Goldenhar Syndrome. Okusho ukuthi, ngaphezu kwezici ze-Hemifacial Microsomia, umuntu one-Goldenhar Syndrome angase abe nezimila ezingezona umdlavuza emehlweni (ama-epibubulbar dermoids) noma izinkinga zomgogodla (isb., ukuhlangana kwamathambo). Kungase kube nezinkinga ngenhliziyo noma izinso.

Kalula nje, i-Hemifacial Microsomia yisimo esithinta kakhulu ukukhula kobuso. I-Goldenhar Syndrome yisimo esingaba nezimpawu eziningi, sithinte nezinye izingxenye zomzimba. Akuwona wonke umuntu one-Hemifacial Microsomia one-Goldenhar Syndrome, kodwa abantu abaningi abane-Goldenhar Syndrome banezimpawu ze-Hemifacial Microsomia.

Umlayezo Wokuya Nawe Ekhaya

Kulungile, ngakho-ke nazi izinto ezibaluleke kakhulu okudingeka uzikhumbule nge-Hemifacial Microsomia esikhulume ngazo:

• Lesi yisimo sokuzalwa lapho izingxenye zohlangothi olulodwa (noma mhlawumbe zombili) zobuso zingakhuli kahle.
• Angazi kahle ukuthi kungani lokhu kwenzeke. Ngakho-ke, akulona iphutha lakho.
• Izimpawu ziyahlukahluka kumuntu nomuntu , ezinye azinazo izimpawu eziningi, ezinye zinobukhulu obuthile.
• Kukhona ukwelashwa kokuhlinzwa nokunye okutholakalayo . Lokhu kuhlelwa yithimba lodokotela abangochwepheshe njengoba ingane ikhula.
• Izingane ezinalesi simo zingaphila impilo ejwayelekile .
• KumntwanaKubaluleke kakhulu ukunikeza ukwesekwa, ngokomzimba nangokwengqondo. Funa usizo kodokotela nakwabeluleki.
• Ukukhuluma ngokukhululekile nengane yakho kuyimbangela enkulu yokuba ikwazi ukubhekana nalesi simo.

Ngiyethemba ukuthi lolu lwazi luzokusiza. Uma wena noma othile omaziyo enale nkinga, into engcono kakhulu ongayenza ukufuna iseluleko sezokwelapha esifanelekile ngokushesha okukhulu. Bazokwazi ukukunikeza isiqondiso esifanele.

I- Hemifacial Microsomia, i-Hemifacial Microsomia, Ukukhubazeka Kobuso, Ukukhubazeka Kokuzalwa, Impilo Yabantwana, Ukuhlinzwa, i-Craniofacial Microsomia, i-Goldenhar Syndrome