Ngaba wakha waphawula ukuba umhlathi ongezantsi nesilevu somntwana wakho osandul’ ukuzalwa zincinci kakhulu? Ngaba ubonakala enengxaki yokuphefumla, ingakumbi xa elele ngomqolo? Ngaba ubonakala exinwe lubisi? Kuqhelekile ukuba umama azive esoyika xa ebona izinto ezinje. Namhlanje siza kuthetha ngemeko engaqhelekanga kodwa ebalulekileyo enokubangela ezi mpawu. Siyibiza ngokuba yiPierre Robin Syndrome (PRS).
Yintoni iPierre Robin Syndrome (PRS)?
Ngamafutshane, iPierre Robin Syndrome (PRS) sisifo esingaqhelekanga sokuzalwa esenzeka ngelixa umntwana esakhula esibelekweni. Oogqirha ngamanye amaxesha bayibiza ngokuba yiPierre Robin Sequence. Esi sifo sichaphazela kakhulu ubuso bomntwana, ingakumbi umlomo nomhlathi. Ezi ngxaki zinokwenza kube nzima kumntwana ukuphefumla, ukuncancisa, okanye ukusela ebhotileni.
Cinga ngayo, iindawo zobuso bethu kufuneka zikhule ngokulandelelana. Emva kokuba umhlathi ongezantsi wenziwe kakuhle, ulwimi lufika kwindawo yalo efanelekileyo. Emva koko intlama ephezulu iyakheka. Kodwa kwi-PRS, olu landelelwano luyaphazamiseka. Yiyo loo nto ngamanye amaxesha lubizwa ngokuba yi-"Sequence".
Le meko ayixhaphakanga kangako. Ngokomyinge, ngumntwana omnye kuphela kwabayi-8,500 onethuba lokufumana le meko. Ngoko ke ungoyiki xa usiva ngale nto. Kodwa kubaluleke kakhulu ukuyiqonda le nto.
Ndingazi njani ukuba umntwana wam une-PRS? Ziziphi iimpawu eziphambili?
Amaxesha amaninzi, oogqirha banokuzibona ezi mpawu kwangoko nje ukuba umntwana uzelwe. Kukho utshintsho oluthile emzimbeni kunye neempawu ezibonakala kakhulu kwi-PRS. Masizijonge ngokwahlukeneyo.
| Uhlobo lophawu | Ingcaciso elula |
|---|---|
| Umahluko Omkhulu Womzimba | |
| Umhlathi omncinci ongezantsi kunye nesilevu (Micrognathia) | Umhlathi ongezantsi womntwana kunye nesilevu sakhe zincinci kakhulu ngobukhulu. Oku kubonakala ngokucacileyo ukuba ujonge iprofayili yobuso. |
| I-Cleft Palate | Inxalenye ephezulu yomlomo, oko kukuthi, incasa, ayivalwanga ngokupheleleyo. Kukho umngxuma embindini. Oku kuvumela ubisi ukuba luphume empumlweni xa usela. |
| Ulwimi oluya emqaleni (i-Glossoptosis) | Ngenxa yokuba umhlathi ongezantsi mncinci, akukho ndawo yaneleyo yokuba ulwimi lungene kakuhle emlonyeni, kwaye ulwimi lubuyela umva, oko kukuthi, lubhekise emqaleni. Le yeyona nto ibangela ubunzima bokuphefumla. |
| Inkalakahla egobileyo ephezulu | Kwabanye abantwana abangenayo incakuba eqhekekileyo, incakuba inokuba phezulu kakhulu kunesiqhelo, njenge-arch. |
| Ukuba namazinyo xa uzalwa (amazinyo aseNatal) | Kunqabile kakhulu, abanye abantwana banokuba namazinyo elinye okanye ngaphezulu xa bezalwa. |
| Iimpawu Eziphumelayo | |
| Ukuphefumla (iStridor okanye iStertor) | Njengoko ulwimi luwela emqaleni, lunokuvala indlela yomoya kwaye luvelise isandi sokurhona okanye somlozi. Esi sandi sivakala ngakumbi xa umntwana elele ngomqolo. |
| Ubunzima bokusela ubisi | Ngenxa yokuba umlomo uqhekekile kunye nendawo yolwimi, umntwana usenokungakwazi ukubambelela kakuhle kwingono aze ancancise ubisi. Ubisi lunokunamathela nasemqaleni. |
| Iingxaki zokufumana ubunzima | Ngenxa yokuba kunzima ukuncancisa, umntwana usenokungafumani izondlo ezifunekayo kwaye usenokungatyebi kakuhle. |
Kutheni oku kusenzeka? Yintoni isizathu sale nto?
Enyanisweni, oogqirha abakafumani unobangela ochanekileyo woku, kodwa siyazi ukuba kusenokwenzeka ukuba kubangelwa ziinguqu ezininzi zemfuza ezenzeka ngexesha lokukhula komntwana esibelekweni.
Ulandelelwano lwale nto lulandelayo:
1. Okokuqala, umhlathi ongezantsi womntwana awukhuli kakuhle. Ukhula ube mncinci kakhulu.
2. Ngenxa yokuba umhlathi ongezantsi umncinci, ulwimi alunandawo yokuphumla ngokufanelekileyo, kwaye lutyhalelwa phezulu nangasemva (ngasemphinjeni).
3. Ulwimi luvela ngolu hlobo luze luvale indlela yomoya ephezulu.
4. Kule ndawo, iindawo ezimbini zenkalakahla engasentla yomntwana kufuneka zivaleke. Kodwa ngenxa yokuba ulwimi oluvele phezulu luyadibana, iindawo ezimbini zenkalakahla azikwazi ukudibana, nto leyo eshiya umsantsa phakathi.
Olu luhlu lweziganeko ludibene, njengoluhlu lweedomino eziwela enye emva kwenye. Yiyo loo nto lukwabizwa ngokuba yiPierre Robin Sequence.
Ngamanye amaxesha inokuba yimfuza. Umzekelo, i-PRS inokwenzeka njengophawu lwezinye iimeko zemfuza, ezifana ne-Stickler syndrome.
Ingaba le meko iyingozi? Ngaba kukho iingxaki ezinokwenzeka?
Kuqhelekile ukuba uzive usoyika xa usiva oku. I-PRS inokwahluka ukusuka kwencinci ukuya kwenzulu . Kwinqanaba eliphantsi, ayiyongxaki kangako.
Nangona kunjalo, ukuba une-PRS enzima, iingxaki ezisongela ubomi zinokubakho ngenxa yokuqhubeka nokuvaleka kwendlela yomoya.
- Uxinzelelo lokuphefumla: Ukuvaleka ngokupheleleyo kwendlela yomoya.
- Amanqanaba aphantsi eoksijini egazini (iHypoxemia): Ioksijini engonelanga emzimbeni.
- Uxinzelelo oluphezulu lwegazi oluphuma entliziyweni: Uxinzelelo oluphezulu kwimithambo yegazi ethwala igazi lisuka entliziyweni ukuya emiphungeni.
- Ukungasebenzi kakuhle kwentliziyo: Imeko apho ukusebenza kwentliziyo kubuthathaka ngenxa yoxinzelelo ekufuneka iluthwale.
Kodwa musa ukoyika ezi zinto. Ukuba umntwana wakho une-PRS enzima, oogqirha kunye nabasebenzi basesibhedlele baya kumjonga ngokusondeleyo. Ukuba kukho naziphi na iingxaki, baya kuba bekulungele ukuqala unyango olufunekayo ngokukhawuleza.
Ugqirha uyifumana njani kanye kanye le nto?
Uninzi lwexesha, ugqirha wezingane unokuzibona ezi mpawu ngexesha lokuhlolwa rhoqo esibhedlele emva kokuba umntwana ezelwe.
Ukuba umntwana unemeko engentle kakhulu, isenokungabonakali xa ezalwa. Nangona kunjalo, ukuba umntwana akatyebi okanye akavelisi ngxolo ingaqhelekanga xa ephefumla, ugqirha usenokuba nexhala.
Ukuba kukho amathandabuzo, ugqirha angenza olu vavanyo:
- Uvavanyo olupheleleyo lomzimba: Apha, sihlola ngononophelo iimpawu ezintathu eziphambili esithethe ngazo (isilevu esincinci, ulwimi olutyhalelwa ngasemva, incasa eqhekekileyo).
- I-CT scan (i-Computed Tomography scan): Oku kunceda ukubona ngokucacileyo ulwakhiwo kunye nendawo amathambo obuso bomntwana.
- Uphononongo lokulala: Olu vavanyo lwenziwa ukuze kuchongwe ukuba umntwana une-obstructive sleep apnea (OSA), imeko apho ukuphefumla kuyeka ngexesha lokulala ngenxa yolwimi olubuyela umva.
Zithini iindlela zonyango zoku?
Unyango luxhomekeke ekubeni iimpawu zomntwana wakho zinzima kangakanani na.
I-PRS ethambileyo
Imeko yabanye abantwana ayibi mbi kangako. Njengoko bekhula, umhlathi wabo ongezantsi nawo uyakhula. Xa umhlathi ongezantsi ukhula, ulwimi lunendawo yokuphumla, ngoko ke luyeka ukuwa emqaleni. Emva koko ubunzima bokuphefumla buyanyamalala. Abantwana abanjalo basenokungadingi naluphi na utyando.
Ugqirha ukucebisa oku:
- Indawo yokulala komntwana: Jika intloko yomntwana uyibeke ecaleni uze uyibeke ngesisu sakhe ukuze alale. Oku kuvumela amandla adonsela phantsi ukuba atyhale ulwimi phambili, avule indlela yomoya yokuphefumla. Ungaze umlalise umntwana wakho kule ndawo ngaphandle kwengcebiso kagqirha.
- Iindlela ezikhethekileyo zokuncancisa: Ukusebenzisa iikomityi kunye neebhotile ezikhethekileyo, kunye nokondla umntwana eme nkqo kuyacetyiswa.
I-PRS Eqatha
Ukuba umntwana unengxaki enkulu yokuphefumla kwaye akakwazi ukuncancisa, utyando lunokufuneka.
- Utyando lwe-osteogenesis oluphazamisayo lwe-mandibular: Olu lolona tyando luqhelekileyo. Kule nkqubo, ugqirha wotyando uqhekeza ithambo lomhlathi osezantsi lomntwana libe ziindidi ezimbini aze afake isixhobo esincinci phakathi kwabo. Emva koko, kwiintsuku ezimbalwa, isixhobo siyajikeleziswa ukuze kususwe iziqwenga ezibini zethambo. Umsantsa ophakathi kwazo uzaliswa ngamathambo amatsha. Ngale ndlela, umhlathi ongezantsi unokwandiswa kancinci kancinci. Njengoko umhlathi ukhula, ulwimi luya phambili, luvula indlela yomoya.
- I-Tracheostomy: Ukuba ubunzima bokuphefumla bunzima kakhulu, kwenziwa umngxuma omncinci ngaphambili entanyeni kwaye kufakwe ityhubhu ngqo kumbhobho womoya ukunceda umntwana aphefumle. Oku kwenzelwa ukusindisa ubomi bomntwana kwimeko kaxakeka.
- Ukunamathela kolwimi nomlomo: Le yindlela engaqhelekanga. Kule nkqubo, incam yolwimi ithungwa okwethutyana ukuya kumlomo ongezantsi. Oku kuthintela ulwimi ukuba lungaweli emqaleni. Kamva, xa umhlathi womntwana ukhula, imithungo iyanqunyulwa ize isuswe.
Ndingenza ntoni njengomzali?
Xa ufumanisa ukuba umntwana wakho unale meko, ungaziva uxinezelekile zizinto ezininzi omele uzicinge. Yinto eqhelekileyo leyo. Khumbula, wena nomntwana wakho aninodwa. Oogqirha nabasebenzi basesibhedlele bahlala bekulungele ukukunceda.
Baza kukuchazela ezi zinto:
- Indlela yokulawula iimpawu zomntwana wakho: Uza kuchazelwa ngokupheleleyo malunga notyando kunye nolunye unyango, izinto ezilungileyo nezingalunganga, ukuze ukwazi ukwenza isigqibo esifanelekileyo kumntwana wakho.
- Indlela yokunyamekela umntwana wakho ekhaya: Indlela yokulalisa umntwana wakho, indlela yokumncancisa, into omawuyenze xa kukho imeko engxamisekileyo, njl. Musa ukoyika ukubuza imibuzo ngokuphindaphindiweyo ukuba awuqondi.
- Amaqela enkxaso kunye neenkonzo: Ungafumana ulwazi malunga namaqela enkxaso apho abanye abazali babantwana abaneengxaki ezifanayo banokujoyina khona. Ukuthetha nomntu oye wadlula kwimeko efanayo nawe kunokuba luncedo kakhulu.
Ufanele ubuze ugqirha womntwana wakho le mibuzo:
- Ingxaki yomntwana wam inzulu kangakanani?
- Ngaba unezinye iingxaki zempilo ngaphandle kwe-PRS?
- Ungacebisa utyando? Ngoba?
Khumbula, akukho nyango lupheleleyo loku, kuba yinto ezuzwa njengelifa. Kodwa ngonyango olufanelekileyo, iimpawu zinokulawulwa ngokupheleleyo kwaye umntwana wakho angaphila ubomi obusempilweni nobuqhelekileyo njengabanye abantwana.
Umyalezo Wokuya Ekhaya
- I-Pierre Robin Syndrome (PRS) sisifo sokuzalwa esibangela ukuba umhlathi ongezantsi womntwana ungakhuli kakuhle. Oku kunokubangela ukuba ulwimi luwele emqaleni, nto leyo eyenza kube nzima ukuphefumla nokuncancisa.
- Le yimeko engaqhelekanga kwaye idla ngokuchongwa kungekudala emva kokuba umntwana ezelwe.
- Unyango luxhomekeke kubukhali beempawu. Abanye abantwana bayachacha njengoko bekhula, kodwa kwiimeko ezinzima, utyando lunokufuneka.
- Kuqhelekile ukuba noloyiko xa usiva ngale meko. Kodwa ngonyango olufanelekileyo nokhathalelo lwakho, uninzi lwabantwana luphila ubomi obuqhelekileyo nobusempilweni.
- Ukuba uneengxaki okanye amathandabuzo, ungaze unqikaze ukubuza imibuzo. Ugqirha wakho kunye neqela lezonyango basoloko bekulungele ukukunceda.
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