Ingaba icala elinye lobuso bomntwana wakho lincinci kunelinye? Masithethe ngeHemifacial Microsomia!

Ngaba wakha waphawula ukuba ngamanye amaxesha icala lobuso bomntwana lahlukile kancinci kwelinye, mhlawumbi lahlukile kancinci? Okanye indlebe ikwindawo eyahlukileyo kancinci, okanye isidlele asibonakali sakhiwe kakuhle. Kuqhelekile ukuba umzali azive esoyika kwaye exhalabile xa ebona into efana nale. Leyo yimeko esiza kuthetha ngayo namhlanje, ebizwa ngokuba yiHemifacial Microsomia. Ungakhathazeki, masithethe ngale nto ngokweenkcukacha.

Yintoni iHemifacial Microsomia?

Ngamafutshane, iHemifacial Microsomia yimeko yokuzalwa . Yenzeka xa iindawo zecala elinye lobuso bomntwana, njengeendlebe, umlomo, kunye nethambo lomhlathi, zingakhuli kakuhle xa kuthelekiswa nelinye icala. Cinga ngayo njengezinto 'ezincinci' ezingekhoyo kwelinye icala xa ubuso busenziwa. Oku ngamanye amaxesha kubizwa ngokuba yiCraniofacial Microsomia.

Ixesha elininzi, oku kuchaphazela icala elinye lobuso kuphela . Nangona kunjalo, kunqabile kakhulu, le meko inokuchaphazela amacala omabini obuso. Kwimeko enjalo, siyibiza ngokuba yiBilateral Hemifacial Microsomia.

Le meko inokuchaphazela iindawo ezilandelayo zobuso:

• Amathambo eempundu
• Amehlo
• Inxalenye engaphandle yendlebe kunye nendlebe ephakathi
• Imithambo-luvo yobuso (yile ilawula inkangeleko yobuso bethu kunye nokuhleka kwethu)
• I-Mandible
• Izihlunu zobuso
• Intamo
• Ukhakhayi
• Amazinyo

Nangona kunqabile kakhulu, ngamanye amaxesha iHemifacial Microsomia inokuhambisana neengxaki kwezinye iinkqubo zomzimba, ezifana nentliziyo, izintso, amathambo esifuba (iimbambo), kunye nomqolo.

Ngokwezibalo, le meko ichaphazela malunga ne-1 kwiintsana ezingama-3,000 ukuya kuma-5,600 ezizalwayo. Yeyona meko yesibini ixhaphakileyo ebusweni, emva kwe-cleft lip okanye i-cleft palate.

Zingaba yintoni iimpawu?

Iimpawu zale meko zinokwahluka kakhulu kumntu nomntu. Abanye abantu bachaphazeleka kancinci , ngelixa abanye bechaphazeleka kakhulu . Oku kuthetha ukuba uhlobo kunye nobunzima bezi mpawu ziyahluka ngokuxhomekeke ekubeni ingakanani indawo yobuso ephuhlileyo.

Nazi ezinye zezona mpawu zixhaphakileyo:

• I-Microtia: Le yimeko apho indlebe incinci, ingalungelelananga kakuhle, okanye imilo yayo ingaqhelekanga. Isenokungabikho kwaphela.
• I-Hypodontia: Amanye amazinyo awaphumi. Oko kukuthi, amazinyo awaphumi kwasekuqaleni.
• Ukukhubazeka kobuso ngenxa yobuthathaka bemithambo-luvo yobuso: Kunokuba nzima ukwenza izinto ezinjengokuvala iliso kakuhle kwicala elichaphazelekayo, ukuncuma, okanye ukufinga iintshiya.
• Iithegi zolusu:Ezi ziqwenga zesikhumba ezingaphezulu zihlala zibonakala kufutshane nendlebe, ngamanye amaxesha esidleleni.
• Ubuncinci beliso elinye (iMicrophthalmia): Iliso elichaphazelekileyo lisenokubonakala lincinci xa lithelekiswa nelinye iliso. Ibhola yeliso ngokwayo isenokuba ncinci.
• Uncumo olungalinganiyo: Ngenxa yokuba izihlunu kunye nemithambo-luvo azikhulanga kakuhle, amacala omabini obuso asenokungalingani xa uncuma.

Ezi zezona mpawu ziphambili zibonwayo. Kodwa njengoko benditshilo ngaphambili, ayinguye wonke umntu onazo zonke ezi mpawu, kwaye ubukhali beempawu ezikhoyo buyahluka kakhulu.

Kutheni oku kusenzeka? Zithini izizathu?

Enyanisweni, iingcali azikayazi eyona nto ibangela iHemifacial Microsomia. Zikholelwa ukuba le meko ibangelwa yinto ephazamisa uphuhliso losana olungekazalwa kwiiveki ezintandathu zokuqala emva kokumitha (leyo yinyanga yokuqala enesiqingatha sokukhulelwa). Khumbula, kukwiiveki ezimbalwa zokuqala apho iindawo zobuso bomntwana ziqala ukwakheka khona. Kulapho into ethile, mhlawumbi ukungabikho kwegazi okuncinci, inokungahambi kakuhle.

Abaphandi abakafumani naluphi na uhlobo oluthile lwezakhi zofuzo okanye izinto ezingqongileyo ezinxulumene noku. Oko kuthetha ukuba ungacingi ukuba kungenxa yento eyenziwe okanye engenziwanga ngumama ngexesha lokukhulelwa. Oku akulotyala lomntu.

Nangona kunjalo, ekubeni ezinye iintsapho zinabantu abangaphezu komnye abanale meko, zicinga ukuba isenokuba yimfuza . Kodwa uphando alwanelanga ukuqinisekisa loo nto okwangoku.

Ziziphi iingxaki ezinokwenzeka ngenxa yale meko?

Ukongeza kutshintsho lobuso, abantwana abaneHemifacial Microsomia banokufumana ezinye iingxaki. Kulungile ukwazi ezi:

• Ukulahlekelwa kukuva: Le ngxaki inokwenzeka, ingakumbi ukuba umjelo wendlebe kunye nendlebe awuphuhliswanga kakuhle. Ngamanye amaxesha, ukuva kunokulahleka ngokupheleleyo kwelinye icala.
• Ukungondleki kakuhle ngenxa yobunzima bokutya: Ukuba umhlathi ongezantsi awulungelelananga kakuhle okanye kukho iingxaki ngamazinyo, kunokuba nzima ukuba umntwana ancancise, atye ukutya kamva, aze ahlafune. Oku kunokukhokelela ekunciphiseni ubunzima kunye nokukhula okungalindelekanga.
• Iimeko zempilo yomlomo: Ukutshixiza amazinyo, amazinyo agobileyo, kunye nemingxuma ziqhelekile.
• Iingxaki zokuthetha: Kunokuba nzima ukubiza amagama nokuthetha ngokucacileyo ngenxa yeengxaki zezihlunu zobuso, umhlathi, kunye nenkalakahla.
• Iingxaki zokubona: Ukubona kunokuchaphazeleka zizinto ezifana ne-microphthalmia (iliso elincinci) kunye nezinye iingxaki zamehlo.
• Iingxaki zokuphefumla:Ingakumbi ukuba umhlathi ongezantsi mncinane kakhulu kwaye imingxuma yempumlo incinci, ubunzima bokuphefumla (i-sleep apnea) bunokubakho xa ulele.

Kubaluleke kakhulu ukuzazi ezi zinto nokufuna iingcebiso zonyango kunye nonyango olufunekayo.

Uyixilonga njani le nto?

Oogqirha badla ngokuqala benze uvavanyo olucokisekileyo lomntwana. Kwiimeko ezininzi, le meko inokubonwa kwangoko emva kokuba umntwana ezelwe, kuba utshintsho lobuso, ingakumbi ezindlebeni nasesilevini, lubonakala ngokucacileyo.

Nangona kunjalo, kwezinye iimeko, uvavanyo lwe-prenatal ultrasound okanye i-MRI (Magnetic Resonance Imaging) olwenziwe ngaphambi kokuba umntwana azalwe, oko kukuthi, ngelixa esesesibelekweni sikanina, lunokunika ingcaciso ngale meko. Nangona kunjalo, oku akusoloko kusenzeka.

Ukuqinisekisa ukuxilongwa kweHemifacial Microsomia, ukufumanisa ubungakanani bomonakalo, kunye nokufumanisa ngqo ukuba zeziphi iindawo zobuchopho ezichaphazelekileyo, oogqirha banokwenza ezinye iimvavanyo zomfanekiso . Umzekelo:

• Ii-X-reyi: Jonga imeko yamathambo obuso.
• Ii-CT scans (ii-Computed Tomography scans): Ezi zinokuvelisa umfanekiso ocacileyo nonobukhulu obuthathu wamathambo kunye nezicubu ezithambileyo zobuso. Oku kunceda kakhulu ekucwangciseni utyando.

Olu vavanyo lunokubonelela ngomfanekiso ocacileyo wamathambo obuso, izihlunu kunye nemithambo-luvo, nto leyo eluncedo kakhulu ekucwangciseni unyango.

Iphathwa njani?

Unyango lwale meko luxhomekeke ekubeni ichaphazela umntwana kangakanani na . Abantwana abane-hemifacial microsomia badla ngokufuna utyando ukuze kulungiswe okanye kwakhiwe kwakhona iindawo zobuso.

Oko kwenziwa kolu tyando kunye nexesha oluqhutywa ngalo kuyahluka ukusuka kumntwana ukuya komnye, kuxhomekeke kwiimfuno zomntwana, ubudala, kunye namalungu achaphazelekayo.

Kubaluleke kakhulu ukuba xa umntwana esemncinci, oko kukuthi, esengumntwana , injongo ephambili yonyango kukunceda umntwana aphefumle aze atye kakuhle . Ezi zizinto ezisisiseko.

Emva koko, njengoko umntwana ekhula, oko kukuthi, ngexesha lobuntwana kunye nokufikisa , injongo yonyango kukuphucula ukusebenza kobuso kunye nenkangeleko . Oko kukuthi, ukuphucula ukulingana kobuso kunye nenkangeleko ngelixa ukwenza izinto ezinje ngokuthetha, ukutya, kunye nokuncuma kube lula.

Kwiimeko ezininzi, olu tyando alunakwenziwa ngaxeshanye. Njengoko umntwana ekhula, amathambo obuso ayakhula kwaye inkqubo yenziwa ngamanqanaba ahlukeneyo.Ezi zizinto ekufuneka zenziwe. Ezinye iinkqubo zotyando kufuneka zihlehliswe njengoko umntwana ekhula. Le yinto ethatha ixesha kwaye ifuna umonde.

Unyango lotyando

Iindlela zotyando lweHemifacial Microsomia zingabandakanya oku kulandelayo. Ezi zenziwa liqela loogqirha abaziingcali:

• Utyando lwendlebe, impumlo nomqala (utyando lwe-ENT): ingakumbi ukwakhiwa kwakhona kwendlebe kunye nokufakelwa kweendlebe.
• Utyando lokulungisa ubuso ngeplastiki kunye nokwakha ngokutsha: Buyisela ulungelelwano lobuso kunye nenkangeleko. Ukufakelwa kwamafutha okanye ezinye izicwili kwiindawo apho izicwili ezithambileyo zingekho khona.
• Utyando lwamehlo / Utyando lwamehlo: Ukuba amehlo mancinci okanye kukho iingxaki ngeenkophe, zilungise.
• Utyando lwe-Maxillofacial / Utyando lwe-Orthognathic: Ukulungisa ubude kunye nendawo yomhlathi ongezantsi, umhlathi ongaphezulu, amathambo esihlathi, njl. Ngamanye amaxesha kusetyenziswa iindlela zokuphazamisa i-osteogenesis.
• Utyando lomlomo: Ukukhupha amazinyo ukuba akhutshiwe, ukususwa kwamazinyo ongezelelweyo.

Konke oku kwenzelwa ukunceda umntwana aphile ubomi obuqhelekileyo kangangoko kunokwenzeka.

Utyando olwenziwa kwiintsana ezisandul' ukuzalwa

Ukuba usana olusandul’ ukuzalwa lunengxaki yokuphefumla okanye alukwazi ukuncancisa , oogqirha basenokuqala unyango kwangoko nje ukuba umntwana abelekwe. La ngamanyathelo okusindisa ubomi.

Kukho iindlela ezimbini eziqhelekileyo ezinokwenziwa kwangoko emva kokuba umntwana ezelwe:

• I-Tracheostomy: Oku kuquka ukwenza umngxuma omncinci entanyeni yomntwana kunye nombhobho womoya kunye nokufaka ityhubhu ukuze incede iphefumle. Oku kwenziwa ukuba indlela yomoya ivaliwe.
• Ukondla ngetyhubhu (ityhubhu yeNasogastric okanye ityhubhu yeGastrostomy): Ukuba umntwana akakwazi ukuncancisa eyedwa, kusetyenziswa ityhubhu ukunika isondlo. Le inokuba yityhubhu ehamba ngempumlo iye esiswini (ityhubhu yeNG), okanye ityhubhu ehamba ngqo esiswini (ityhubhu yeG).

Unyango olungelulo utyando

Ukongeza kotyando, oogqirha banokucebisa unyango olungenalo utyando olufana nolu. Olu lubaluleke kakhulu ukuphucula umgangatho wobomi bomntwana:

• Iibraces kunye nezinye izixhobo zokulungisa amazinyo: Ezi zisetyenziselwa ukulungisa indawo yemihlathi ukuba amazinyo ayatsalwa.
• Izixhobo zokuva: Ukuba unengxaki yokuva, unokufuna ukusebenzisa izixhobo zokuva ezifakwe kwi-cochlear okanye izixhobo zokuva ezifakwe kwithambo (BAHA).
• Unyango lokuthetha:Ukuba kunzima ukuginya, ukuba kunzima ukuthetha, bancede. Oku kunceda ekubizeni amagama ngokucacileyo nasekuqiniseni izihlunu zobuso.

Zonke ezi zinto ziyahlangana ukuze zenze ubomi bomntwana bube lula. Oku kufuna inkxaso yabantu abaninzi, kuquka oogqirha, oogqirha botyando, oogqirha bamazinyo, oogqirha bengqondo, kunye neengcali ze-audiologists.

Ngaba iHemifacial Microsomia ingathintelwa?

Ngelishwa, le meko ayinakuthintelwa . Kuba, njengoko benditshilo ngaphambili, abaphandi abakayazi kakuhle into ebangela oku. Nangona kurhanelwa ukuba kusenokuba kukho unxibelelwano lwemfuza, nayo loo nto ayikafunyanwa ngokuqinisekileyo.

Kubaluleke kakhulu ukuqonda ukuba ukuba umntwana wakho uneHemifacial Microsomia, akungenxa yento oyenzileyo okanye ongayenzanga ngexesha lokukhulelwa . Musa ukuziva kakubi ngayo, kwaye ungazibeki tyala.

Injani imbono ngale meko?

Kwiimeko ezininzi, le meko ayithinteli ixesha lokuphila komntwana . Oku kuthetha ukuba umntwana onesi sifo unokuphila ubomi obuqhelekileyo, njengomntwana ongenaso.

Nangona kunjalo, iHemifacial Microsomia inokuchaphazela umgangatho wobomi bomntwana. Njengoko abantwana bekhula, kufuneka bajongane nemingeni ehambisana nokwazi ukuba bahlukile kwabanye.

Nokuba utyando luphumelele, aba bantwana banokuba nobunzima kwizinto abanye abantwana abanokuzenza ngokulula, njengokutya, ukuthetha, nokulala. Ngoko ke kufuneka silumke nakwezo zinto.

Ndingamnyamekela njani umntwana wam?

Abantwana abaneHemifacial Microsomia bafuna unyango oluqhubekayo, olunokubandakanya utyando oluninzi. Nangona kunjalo, xa befikelela ebudaleni, basenokungasadingi utyando.

Nangona kunjalo, ukulandelela ixesha elide kunokufuneka ukuze kubonwe ukuba iingxaki ziyaphinda zibuye okanye ukuba iingxaki ezikhoyo ziya zisiba mandundu ngokuhamba kwexesha. Umzekelo, izinto ezifana nezixhobo zokuva kunye nezinto ezifakelwayo zinokufuna ukulungiswa ngamanye amaxesha. Impilo yamazinyo nayo kufuneka ikhathalelwe rhoqo.

Njengemingeni yomzimba, imiphumo yengqondo yokuba ngumntu owahlukileyo inokuchaphazela impilo yomntwana ngokweemvakalelo. Ke ngoko, kubalulekile ukuba umntwana afumane iingcebiso ukuze amncede aphuhlise amaqhinga okumelana neengxaki.

Njengomzali, ndiyaqonda ukuba ufuna wonke umntu abone umntwana wakho ngendlela efanayo nawe.Kuqhelekile ukuba abantwana bazive besoyika njengoko bekhula baze baqale isikolo. Ngamanye amaxesha abantwana, ingakumbi abo bavakalelwa kukuba bahlukile kubo, banokuba nenkohlakalo baze babahlekise.

Kwangoko nje umntwana wakho ekhulile ngokwaneleyo ukuba aqonde, thetha naye ngokukhululekileyo ngemeko yakhe . Ukwenza olu hlobo lwencoko lube yinto eqhelekileyo akuyi kumnika amandla nje kuphela, kodwa kuya kumnceda aqonde ukuba umahluko wobuso bakhe awuchazi ukuba ungubani na.

Utyando lunokulungisa iimpawu ezininzi zomzimba zeHemifacial Microsomia. Ukongeza, unyango lokuthetha lunokunceda umntwana wakho afunde ukuveza iimvakalelo zakhe nokusebenzisana kakuhle nabanye abantu eluntwini. Cela ugqirha wakho ulwazi oluthe kratya kunye noncedo. Bakho ukuze bakuncede.

Yintoni umahluko phakathi kweHemifacial Microsomia kunye neGoldenhar Syndrome?

I-Goldenhar Syndrome yimeko engaqhelekanga yokuzalwa. Ikwabizwa ngokuba yi-Oculoauriculovertebral spectrum (OAVS).

I-Hemifacial Microsomia isenokuba luphawu lwe-Goldenhar Syndrome. Oko kukuthi, ukongeza kwiimpawu ze-Hemifacial Microsomia, umntu one-Goldenhar Syndrome unokuba neethumba ezingezizo zomhlaza emehlweni (ii-epibubulbar dermoids) okanye iingxaki zomqolo (umz., ukudibana kwamathambo). Kunokubakho neengxaki zentliziyo okanye izintso.

Ngamafutshane, iHemifacial Microsomia yimeko echaphazela kakhulu uphuhliso lobuso. IGoldenhar Syndrome yimeko enokuba neempawu ezahlukeneyo, ezichaphazela namanye amalungu omzimba. Ayingabo bonke abantu abaneHemifacial Microsomia abaneGoldenhar Syndrome, kodwa abantu abaninzi abaneGoldenhar Syndrome baneempawu zeHemifacial Microsomia.

Umyalezo Wokuya Ekhaya

Kulungile, nazi izinto ezibalulekileyo ekufuneka uzikhumbule malunga neHemifacial Microsomia esithethe ngazo:

• Le yimeko yokuzalwa apho iindawo zecala elinye (okanye mhlawumbi zombini) zobuso zingaphuhli kakuhle.
• Andazi ukuba kutheni oku kwenzeke. Ngoko ke, akulotyala lakho.
• Iimpawu ziyahluka kumntu nomntu , ezinye azinazo kangako, ezinye zininzi.
• Kukho unyango lotyando kunye nolunye unyango olufumanekayo . Olu lucwangciswa liqela loogqirha abaziingcali njengoko umntwana ekhula.
• Abantwana abanale meko banokuphila ubomi obuqhelekileyo .
• YomntwanaKubaluleke kakhulu ukubonelela ngenkxaso, emzimbeni nasengqondweni. Funa uncedo koogqirha nakubacebisi.
• Ukuthetha ngokukhululekileyo nomntwana wakho ngamandla amakhulu okumelana nale meko.

Ndiyathemba ukuba olu lwazi luza kukunceda. Ukuba wena okanye umntu omaziyo unengxaki, eyona nto ilungileyo onokuyenza kukufuna iingcebiso zonyango ezifanelekileyo ngokukhawuleza. Baya kukwazi ukukunika isikhokelo esifanelekileyo.

I- Hemifacial Microsomia, i-Hemifacial Microsomia, Ukukhubazeka kobuso, Iziphene zokuzalwa, Impilo yabantwana, Utyando, i-Craniofacial Microsomia, i-Goldenhar Syndrome