Ingaba umntwana wakho uneminwe okanye iinzwane ezimile ngendlela engaqhelekanga? Masithethe nge-Ectrodactyly!

Xa umntwana wakho efika kweli hlabathi, kuyinto eqhelekileyo ukuba njengomzali uzive wothukile kakhulu, usizi, kwaye uxhalabile ukuba ufumanisa ukuba omnye weminwe okanye iinzwane zakhe awukho okanye ubekwe ngendlela eyahlukileyo. "Kutheni oku kwenzeke kumntwana wam?" Usenokuba uzibuza. Kodwa ungakhathazeki, awuwedwa. Namhlanje, siza kuthetha ngale meko, eyaziwa ngokwezonyango ngokuba yi -'ctrodactyly,' ngokucacileyo nangokulula.

Yintoni i-Ectrodactyly? Ngamafutshane...

I-Ectrodactyly yimeko eyenzeka xa umntwana ezalwa ngeminwe okanye iinzwane. Oogqirha bathi oku "ngumahluko wesandla sokuzalwa". Kalula nje, inxalenye ephakathi yesandla somntwana, oko kukuthi, omnye okanye ngaphezulu kweminwe ephakathi, ayikhuli kakuhle. Oku kubangela ukuba kubekho umngxuma ofana no-V, okanye umngxuma, phakathi kwesandla. Ngamanye amaxesha, isandla somntwana sinokubonakala njengeenzipho zenkala . Kwakhona, iminwe eseleyo inokunamathelana kunye kwaye idityaniswe ngewebhu.

Oku kukwabizwa ngokuba yi-'cleft hand' kunye ne -'split hand/foot malformation' (SHFM) . Into ebalulekileyo kukuba le meko ayinakuchaphazela izandla kuphela, kodwa neenzwane zeenyawo zomntwana .

I-Ectrodactyly ngamanye amaxesha ingenzeka yodwa. Okanye, inokuba yinxalenye yenye imeko okanye isifo esichaphazela amanye amalungu omzimba womntwana. Ingachaphazela isandla esinye okanye zombini izandla. Ubunzima bemeko buyahluka ukusuka kumntu ukuya komnye . Iimpawu kunye nezizathu zemfuza nazo ziyahluka.

Musa ukucinga ukuba nguwe wedwa lo. I-Ectrodactyly yimeko engaqhelekanga kakhulu . Ehlabathini lonke, ichaphazela umntwana omnye kuphela kwabangama-90,000 abazalwa bephila.

Ngaba kukho iintlobo zezi?

Ewe, kukho iintlobo ezimbini eziphambili ze-ectrodactyly:

1. Isandla esiqhelekileyo esiqhekekileyo: Kwimeko enjalo, isandla somntwana siba nesimo "se-V". Umnwe ophakathi usenokuba ungekho ngokupheleleyo okanye ngokungaphelelanga. Olu hlobo ludla ngokuba nemvelaphi yemfuza. Oku kuthetha ukuba kukho umntu kusapho onokuthi abe nale meko ngaphambili. Idla ngokuchaphazela izandla zombini, kodwa inokuchaphazela nemilenze.

2. Isandla esiqhekekileyo esingaqhelekanga: Kule meko, isandla somntwana simile njengonobumba "U". Iminwe yoludwe, ephakathi, kunye neyamaza ayikho. Idla ngokuchaphazela isandla esinye kuphela. Olu hlobo aluqhelekanga ukufunyanwa njengelifa. Endaweni yoko, lubangelwa lutshintsho lwemfuza oluzenzekelayo .

Zithini iimpawu zoku? Ungazibona njani ?

Iimpawu ze-ectrodactyly zinokwahluka kakhulu kumntwana ngamnye, ngoko ke kubalulekile ukuba ungoyiki.

• Iintsana ezininzi azinazo iminwe, nokuba zisezandleni okanye ezinyaweni.
• Abanye abantwana banokuba ne -syndactyly , nto leyo ethetha ukuba ulusu oluphakathi kweminwe lunamathelisiwe endaweni yokuba lwahlulwe.
• Ngamanye amaxesha, kwinto ebizwa ngokuba "yimbonakalo ye-lobster claw," umnwe ophakathi awukho kwaye endaweni yawo kukho i-cleft efana ne-cone ethe tyaba esihlahleni, nto leyo eyenza isandla sibonakale ngathi sahlulwe saba zisiqingatha ezibini. Iminwe eseleyo kumacala omabini ale cleft idla ngokudityaniswa.
• Abanye abantwana basenokuba nomnwe omncinci ongenamqhekezo.
• Kwiimeko ezingaqhelekanga, ukulahleka ngokupheleleyo kwesandla kunokwenzeka.

Ukuba umntwana wakho unenye okanye ngaphezulu kwezi mpawu, kungcono ukubona ugqirha ukuze akunike ingcebiso.

Kutheni oku kusenzeka? Yintoni unobangela?

Eyona nto ibangela i-ectrodactyly kukwahluka kwezakhi zofuzo. Nazi ezinye zezakhi zofuzo ezichongiweyo njengezibangela le meko:

• `DLX6`
• `EPS15L1`
• `TP63`
• `WNT10B`
• `DLX5`

Ezi jini zisenokuvakala zinzima kuwe. Kodwa, ngamafutshane, ezi jini zezona zinceda amalungu omntwana akhule kakuhle. Ukuba kukho naluphi na utshintsho koku, lunokubangela iingxaki ngeminwe, njengoko bekutshiwo ngaphambili.

Ngubani onokuba sengozini enkulu yokuba nale meko? Zithini izinto ezinokubangela umngcipheko?

I-Ectrodactyly inokuchaphazela zombini iintsana ezingamaduna nezabasetyhini.

Kuthiwa ezi meko zokuzalwa ngamanye amaxesha zinokunxulunyaniswa nezinto ezithile ezingqongileyo odibana nazo ngexesha lokukhulelwa . Umzekelo:

• Ukusela utywala ngexesha lokukhulelwa.
• Ukutshaya, ukutshaya i-vape, okanye ukusebenzisa ezinye iimveliso zecuba.
• Ukusetyenziswa kweziyobisi ngaphandle kwengcebiso kagqirha.

Kubalulekile: Ukuba ukhulelwe, qiniseka ukuba uthetha nogqirha wakho malunga nento omawuyitye, into oyiselayo, into omawuyenze nemawungayi kuyitya. Ibaluleke kakhulu kwimpilo yakho nomntwana wakho.

Oogqirha bayibona njani le nto?

Uninzi lwexesha, ugqirha unokuyibona le meko kwangoko nje ukuba umntwana uzelwe. Banokubona ngokujonga nje ukuba umntwana uneminwe okanye uqhekeko ezandleni okanye ezinyaweni. Ugqirha ke ngoko unokufumanisa imeko echanekileyo aze akuxelele ukuba loluphi unyango umntwana aludingayo.

Zeziphi iimvavanyo ezenziwayo koku?

Uvavanyo olukhethekileyo alusoloko lufuneka ukuze kufunyanwe isifo nge-ectrodactyly. Wena nogqirha wakho nisenokubona xa nijonga okokuqala ukuba iminwe neenzwane zomntwana wakho azikho, zidibene, okanye ziqhekekile.

Nangona kunjalo, ngamanye amaxesha, kunokwenzeka ukuyibona le meko ngaphambi kokuba umntwana azalwe, ngovavanyo lwe-ultrasound lwe-fetal . Kwimeko enjalo, uya kuyazi le nto kwaye ube nethuba lokuthatha amanyathelo afunekayo ngaphambi kokuba umntwana azalwe.

Emva kokuba umntwana ezelwe, ngaphambi kokuba unyango luqale, ugqirha unokucebisa ukuba umntwana athathwe i-X-ray yeengalo okanye imilenze. Oku kunokunceda ekufumaneni umfanekiso ocacileyo wendawo amathambo ami kuyo.

Ukuba kukho umntu kusapho lwakho onesifo semfuza esifana nesi, kubaluleke kakhulu ukufumana ingcebiso ngemfuza . Oku kunokukunceda ukuba uthathe isigqibo sokuba ungumntu ofanelekileyo na kuvavanyo lwemfuza. Olu vavanyo lunokuchonga utshintsho lwemfuza olubangela i-ectrodactyly, kunye nezinye iingxaki.

Khumbula, ukuba nje ungumthwali wenguqu yemfuza akuthethi ukuba abantwana bakho baya kuba nayo. Abacebisi bemfuza banokuchaza umngcipheko wakho baze bakuxelele ngamanye amanyathelo onokuwathatha ukukhusela impilo yakho okanye ukunciphisa umngcipheko wokuba abantwana bakho bafumane iingxaki ezithile zemfuza.

Luluphi unyango lwale nto?

Unyango lwe-ectrodactyly luxhomekeke kubukhali bemeko yomntwana.

• Ngamanye amaxesha, unyango lomzimba kunye/okanye unyango lomsebenzi kuphela lunokwanela umntwana. Olu nyango lunceda ukuphucula ukusebenza kwesandla kwaye lumfundise indlela yokwenza imisebenzi yemihla ngemihla.
• Kwiimeko ezininzi, utyando lokwakha ngokutsha oluqhutywa ngugqirha wamathambo , ugqirha weplastiki , okanye ugqirha wokwakha ngokutsha lunokuphucula ukusebenza kunye nokubonakala kwesandla somntwana.

Nangona kunjalo, utyando lwesandla esahlulwe lunokuba nzima ngakumbi kunotyando lwenyawo esahlulwe lunyawo. Ke ngoko, ugqirha wotyando lomntwana wakho uza kuxoxa nawe ngemeko ethile yomntwana wakho ngokweenkcukacha. Kusenokufuneka utyando olungaphezu kolunye. Olu tyando lunokuqala xa umntwana wakho esemncinci kakhulu, esengumntwana.

Abantu abane-ectrodactyly ngamanye amaxesha basengozini enkulu yokulahlekelwa lusu emva kotyando. Kwakhona, ukuqina kweminwe yingxaki eqhelekileyo emva kotyando, nokuba ukusebenza kwayo kuyaphucuka. Iqela lakho lezonyango liza kuxoxa nawe ngako konke oku.

Ukuba umntwana wam unale meko, ndimele ndilindele ntoni?

Le yeyona ngxaki inkulu abazali abaninzi abanayo.

"Ngaba umntwana wam uza kukwazi ukuphila ubomi obuqhelekileyo?"

Rhoqo, abantu abane-ectrodactyly,Nangona kukho umahluko obonakalayo, izandla zinokugcina izinga eliphezulu lokusebenza. Ngokwendalo zifunda indlela yokusebenzisa izandla zazo. Nangona kunjalo, utyando ngamanye amaxesha lunokuphucula inkangeleko. Kwimeko apho ukusebenza kuphazamisekile, utyando lunokuphucula ukusebenza kunye nenkangeleko.

Uphononongo oluncinci lufumanise ukuba abantu abenze utyando lokulungisa i-ectrodactyly banelisekile ziziphumo zobuhle kunye nokusebenza kotyando.

Ngaba ikho indlela yokuthintela oku?

Ngenxa yokuba i-ectrodactyly yimeko yemfuza, ayinakuthintelwa ngokupheleleyo.

Nangona kunjalo, unganciphisa umngcipheko wakho ngokungaseli utywala, ukutshaya/ukusebenzisa i-vaping, nokusebenzisa iziyobisi ngexesha lokukhulelwa.

Ukuba kukho umntu kusapho lwakho ozalwa eneengxaki zesandla okanye ezinye izifo zemfuza, kungangcono ukuthetha nomcebisi wezemfuza malunga nokuba umntwana wakho uza kuzuza esi sifo njengelifa.

Ndingamnyamekela njani umntwana wam? Ubomi bemihla ngemihla buza kuba njani?

Ukuba umntwana wakho wazalwa ene-ectrodactyly, kubalulekile ukufuna unyango kugqirha wamathambo wabantwana, ugqirha weplastiki, okanye ugqirha wokwakha ngokutsha ogxile kwesi sifo. Banokukunceda ukhethe ukuba loluphi unyango olulungele umntwana wakho.

Ukulungisa imeko yomntwana wakho kunokuba nzima, yinyani leyo. Nangona kunjalo, ugqirha womntwana wakho uza kukukhokela kule nkqubo.

Uninzi lwexesha, abantwana abane-ectrodactyly baphila ubomi obuqhelekileyo ngaphandle kwemida emikhulu ekusebenzeni kwabo. Bafunda ukwenza izinto kwaye basebenzise izandla zabo ngendlela yabo eyahlukileyo. Ngoko ke yiba nesibindi.

Yeyiphi imibuzo omele uyibuze ugqirha?

Xa usiya kugqirha, buza yonke imibuzo onayo. Nazi ezinye zemibuzo ezinokukunceda:

• Luhlobo luni lwe-ectrodactyly umntwana wam analo?
• Ngaba unazo naziphi na ezinye izifo zemfuza?
• Luhlobo luni lonyango olufunekayo kumntwana wam?
• Ndingayinyamekela njani ingalo/umlenze wam emva kotyando?
• Ngaba kuza kufuneka utyando olongezelelekileyo?
• Luluphi uhlobo lonyango okanye olunye uncedo olufumanekayo?

Le mibuzo yindawo elungileyo yokuqala incoko nogqirha wakho. Ungathandabuzi ukubuza nayiphi na imibuzo, nokuba mincinci kangakanani na.

Okokugqibela, ezona zinto zibalulekileyo ekufuneka uzikhumbule

Kunokuba nzima ukwazi ukuba umntwana wakho wazalwa enomahluko kwimilenze yakhe. Kwenzeka kuye wonke umntu. Kodwa khumbula, lo mahluko udla ngokuba yinto nje ebonakala ngayo. Abantu abane-ectrodactyly badla ngokungafumani naluphi na ulahleko lomsebenzi, kuba ngokwemvelo bafunda ukusebenzisa izandla zabo.

Unyango lwe-Ectrodactyly ngamanye amaxesha lunokuba nzima ukunyanga, kodwa ugqirha othembekileyo wamathambo unokukuchazela ukhetho lwakho. Ukuba kukho umntu kusapho lwakho onembali yokukhubazeka kwamalungu omzimba, licebo elihle ukuqwalasela iingcebiso nge-genetic. Umcebisi nge-genetic unokukuchazela into ekufuneka uyazi ngaphambi kokuba umntwana wakho azalwe.

Ungalibali ukuba ngokubonelela umntwana wakho ngothando, inkxaso, kunye nonyango olufanelekileyo, unokuphila ubomi obonwabisayo nobunempumelelo.

` Ngokwe-Ectrodactyly, Ngokwe-Ectrodactyly, umahluko wesandla sokuzalwa, iminwe engekhoyo, isandla esiqhekekileyo, unyawo oluqhekekileyo, i-SHFM, izifo zemfuza, impilo yomntwana, umahluko wesandla sokuzalwa, i-syndactyly