Ngaba umntwana wakho uneengxaki ezininzi kwezi kunye? Masithethe nge-VATER Syndrome / VACTERL Association!

Usenokuba nexhala kakhulu xa oogqirha bekuxelela ukuba umntwana wakho omtsha ngequbuliso ubonakalise utshintsho okanye iziphene kwiindawo ezininzi zomzimba wakhe. Mhlawumbi iiskeni ezenziwe ngaphambi kokuba umntwana azalwe zinike umbono ngento efana nale. Le yimeko esiza kuthetha ngayo namhlanje, i-VATER Syndrome, okanye i-VACTERL Association. Ungakhathazeki, masiyiqonde ngokulula le nto.

Yintoni i-VATER Syndrome / VACTERL Association?

Ngamafutshane, i-VATER syndrome liqela leziphene zokuzalwa ezenzeka kwangethuba ekukhuleni komntwana. Ngokukodwa, ezi ngxaki zenzeka kwiiveki zokuqala ezimbalwa zokukhula komntwana osandul’ ukuzalwa. Le meko inokwahluka ukusuka kumntwana omnye ukuya komnye. Ayizizo zonke iintsana eziya kuba neempawu ezifanayo. Oogqirha bayayikrokrela le meko xa kukho ingxaki malunga namalungu omzimba amathathu ubuncinane adla ngokumelwa ngoonobumba ababizwa ngokuba yi-VATER.

Zimele ntoni ezi nobumba i-VATER / VACTERL?

Esi sisifinyezo. Oko kukuthi, igama elenziwe ngokudibanisa oonobumba bokuqala bamagama esiNgesi amalungu omzimba achaphazelekileyo yile meko. Ekuqaleni lalibizwa ngokuba yi-VATER:

• V - I-Vertebrae : Oku kuthetha amathambo amancinci (ii-vertebrae) emgogodleni .
• A - Impundu : Oko kuthetha impundu .
• I-T - Trachea : Oko kuthetha umbhobho womoya .
• E - Esophagus : Oko kuthetha umbhobho wokutya.
• R - Izintso : Oku kuthetha iingxaki zezintso .

Kamva, njengoko iingxaki kwezinye iindawo ezimbini zomzimba zazibonakala ngale meko, isifinyezo sandiswa kancinci saba yi-VACTERL:

• C - Intliziyo : Oku kuthetha iingxaki ezinxulumene nentliziyo .
• L - Amalungu : Oku kubhekisa kwiingxaki ezinxulumene namalungu (ingakumbi ithambo le-radius ecaleni kobhontsi omkhulu).

Ngaba uyaqonda ukuba ithetha ukuthini i-VACTERL? Le meko iyenzeka xa uninzi lwala malungu luneziphene ezithile ngaxeshanye.

Ngubani onokuchaphazeleka yile meko ye-VACTERL?

I-VACTERL inokuchaphazela nabani na. Ayilofuzo. Oku kuthetha ukuba idla ngokuchaphazela ilungu elinye losapho kuphela. Nangona unobangela ochanekileyo ungaziwa okwangoku, kukholelwa ukuba ibangelwa kukudibana kwefuthe lemfuza kunye nezinto ezingqongileyo ngexesha lokukhulelwa.

Ngokwendlela exhaphake ngayo le meko, ichaphazela malunga nesinye kwiintsana ezisandul’ ukuzalwa ezili-10,000 ukuya kuma-40,000. Nangona kunjalo, eli nani linokuba phezulu kuba abanye abantwana baneempawu ezingabonakaliyo, okanye iimpawu ezimbalwa kuphela.

Ziziphi iimpawu ze-VACTERL syndrome?

Iimpawu zibonakala kakhulu kumalungu omzimba amelwe ngoonobumba be-VACTERL esithethe ngabo ngaphambili. Ezinye zezi mpawu zibonakala ekuzalweni (ekuzalweni) , ngelixa ezinye zinokuvela kamva. Ezi mpawu zinokwahluka kakhulu kumntwana omnye komnye. Ngoku makhe sijonge inxalenye nganye ngokunxulumene nenxalenye nganye.

Iingxaki zoMgogodla (iiVertebrae)

Umqolo yinxalenye ebaluleke kakhulu yomzimba wethu. Kwi-VACTERL, kunokubakho utshintsho oluthile kwindlela olukhula ngayo umqolo.

• Ukugoba komqolo kwicala elinye ( i-scoliosis ).
• Ukwakheka okungahambi kakuhle kwethambo lomqolo (umqolo) (umz., i-hemivertebrae , ithambo lomqolo elidibeneyo ).
• Ukulahlekelwa yithambo lomsila.
• Ukungaqheleki kweembambo (iimbambo ezingekhoyo, ukuba nembambo eyongezelelweyo, iimbambo ezinamatheleneyo okanye ezahlulwe).

Khawucinge ngendlela into efana nale enokuyichaphazela ngayo indlela umntwana ami ngayo kunye nentshukumo yakhe xa isenzeka kumqolo.

Iingxaki zomva (i-Anus)

Abanye abantwana abanale meko basenokungabi nayo i-anus epheleleyo. Oku kuthetha ukuba umngxuma ophuma kuwo indle usenokuba mncinci kakhulu okanye kwindawo engafanelekanga. Oku kukwabizwa ngokuba yi-anal atresia . Oku kwenza kube nzima kumntwana ukuba akhuphe isisu.

Iingxaki zentliziyo

Iingxaki zentliziyo zinokuba zinkulu kakhulu. Kwi-VACTERL, kunokubakho iingxaki ezahlukeneyo ngendlela eyakheke ngayo intliziyo nendlela esebenza ngayo.

• Imithambo yegazi emikhulu (i-aorta kunye nomthambo we-pulmonary) iyasuswa.
• Imingxunya ephakathi kwe-atria yentliziyo ( i-atrial septal defects (ASD) ).
• Ukubetha kwentliziyo ngokukhawuleza ( i-tachycardia ).
• Ukumelwa yintliziyo .
• Uphuhliso olungaphelelanga lwegumbi lentliziyo lasekhohlo ( i-hypoplastic left heart syndrome ).
• Ukuphefumla ngokukhawuleza kunye/okanye ukuqina kwesifuba.
• Izifo zentliziyo ezintsonkothileyo ezifana neTetralogy of Fallot .
• Imingxunya ephakathi kwamagumbi entliziyo ( iingxaki ze-ventricular septal (VSD) ).

Ezinye zezi zifo zentliziyo zinokuba yingozi ebomini. Nangona kunjalo, eminye imingxunya, efana ne-ASD kunye ne-VSD, isenokuzivaleka ngokwayo ngokuhamba kwexesha.

Iingxaki zeTrachea kunye ne-Esophagus

Enye yezona meko zixhaphakileyo ezibonwa kwi-VACTERL kukuba i-trachea kunye ne-esophagus azidibani apho zifanele ukuba khona (I-Tracheoesophageal fistula. Okanye, i-esophagus ayidibani kakuhle nesisu ( esophageal atresia ). Oku kungenxa yokuba:

• Ubunzima bokusela ubisi nokutya.
• Usulelo lwendlela yokuphefumla (umz. i-pneumonia ).
• Ubunzima bokuginya.
• Kusenokubakho ubunzima bokuphefumla.

Khawucinge nje, ukuba kukho ukungalungelelani phakathi kombhobho wokutya nombhobho wokuphefumla, ukutya nesiselo zinokungena emiphungeni, akunjalo? Oko kuyingozi.

Iingxaki zezintso

Iingxaki zezintso kunye nenkqubo yomchamo nazo zinokubonakala kule meko.

• Indawo engaqhelekanga yokuvula urethra (ingakumbi kumakhwenkwe - Hypospadias ).
• Izintso ezingaphuhli kakuhle ( i-renal dysplasia ).
• Izintso kwindawo engafanelekanga ( i-renal ectopia ).
• Umchamo ubuyela umva usuka kwisinyi uye kwizintso ( i-vesicoureteral reflux ).
• Ukuqokelelwa komchamo kwizintso ( i-Hydronephrosis ).
• Usulelo oluqhelekileyo lwendlela yomchamo.

Iingxaki zeMilbows kunye neRadius

Kwi-VACTERL, iingxaki zinokubonakala kwimilenze, ingakumbi kwithambo le-radius kwicala lenzwane enkulu yesandla.

• Ukulahleka ngokupheleleyo kwethambo le-radius ( i-radial aplasia ).
• I-radial hypoplasia ( uphuhliso olungaphantsi kwethambo le-radius).
• Ukulahlekelwa lubhontsi olukhulu.
• Ukuba nethambo elongezelelweyo kubhontsi omkhulu (ubhontsi weTriphalangeal ).

Ukongeza, ezinye iingxaki zinokubonwa nakwamanye amalungu omzimba (ukongeza kwithambo le-radius):

• Ukukhubazeka kweqatha ( unyawo oludibeneyo ).
• Ukungakwazi ukusebenzisa iminwe ethile ngokufanelekileyo, kuba incinci ( hypoplasia ).
• Ukuba neminwe eyongezelelweyo ( nge-polydactyly ).
• Ukudibana kwamathambo amabini engalo ( i-radioulnar synostosis ).
• Iminwe inamathelene (njenge-membrane - syndactyly ).

Ezinye iimpawu ezinokubonwa ukongeza kwigama elithi VACTERL

Ukongeza kwiindawo ezibizwa ngoonobumba ababizwa ngokuba yi-VACTERL, ezinye iimpawu zinokubonwa kwaba bantwana.

• Imilo engaqhelekanga yeendlebe.
• Ukungalingani kwamacala omabini obuso.
• Ubunzima bokuphefumla ngempumlo ( choanal atresia ).
• Umqolo ubambeke kwindawo enye (umqolo ubotshelelwe ).
• Ukukhula kuhamba kancinci kunesiqhelo.
• I-Omphalocele (ukuphuma kwamathumbu ngaphandle komzimba).
• Ukuncitshiswa kwebhokisi yelizwi/ ilarynx .

Kubalulekile: Ayizizo zonke ezi mpawu ezikhoyo kumntwana ngamnye. Abanye abantwana banokuba nezimbalwa kuphela. Kwakhona, kwaneempawu ezifanayo zinokwahluka komnye umntwana kunezomnye.

Yintoni isizathu sokwenziwa kwengqokelela yeVACTERL?

Enyanisweni, unobangela ochanekileyo we-VACTERL syndrome awukafunyanwa. Oku kusaphandwa. Nangona kunjalo, uluvo lwangoku kukuba le meko inokubangelwa kukudibana kwezinto ezininzi zemfuza kunye neemeko ezingqongileyo ezichaphazela uphuhliso lomntwana ongekazalwa ngexesha lokukhulelwa. Oko kukuthi, kusenokubakho unobangela omnye, kodwa kukho izizathu ezininzi kunye.

Indlela yokuchonga ingqokelela ye-VACTERL?

I-VACTERL syndrome idla ngokufunyaniswa ngexesha lovavanyo lwangaphambi kokukhulelwa okanye kwasekuqaleni kobomi. Nangona kunjalo, ngamanye amaxesha iimpawu azibonakali kangako, ngoko ke zinokufunyaniswa ebuntwaneni okanye kwasebudaleni.

I-VACTERL syndrome "luxilongo lokungabandakanywa." Oku kuthetha ukuba oogqirha baqala ngokuzikhupha zonke ezinye izifo kunye neemeko ezinokubangela iimpawu ezifanayo. Kuphela xa kungekho nanye kwezi meko ifunyenweyo apho bacinga ukuba i-VACTERL yimbangela enokubakho.

Ugqirha uza kuqala enze uvavanyo olupheleleyo lomzimba. Oku kuza kujonga iziphene zokuzalwa ubuncinane kwenye yeendawo zomzimba ezibhalwe ngoonobumba be-VACTERL esithethe ngabo ngaphambili. Rhoqo, umntwana one-VACTERL uza kuba nezi ngxaki kwiindawo ezintathu zomzimba ubuncinane .

Emva kovavanyo lomzimba, ugqirha uya kuyalela uvavanyo olongezelelweyo (umz. ii-X-ray , ii-ultrasound , uvavanyo lwegazi). Oku kwenzelwa ukubona naziphi na iingxaki ezisongela ubomi, ingakumbi ezo zentliziyo nezintso, ukuze zinyangwe ngokukhawuleza.

Ziziphi iindlela zonyango lwe-VACTERL syndrome?

Xa kunyangwa i-VACTERL syndrome, eyona nto iphambili kukunciphisa iimpawu ezibangelwa zezi ngxaki emzimbeni ngexesha lesigaba somntwana osandul’ ukuzalwa. Iindlela zonyango ziyahluka ukusuka komnye umntwana ukuya komnye. Oku kungenxa yokuba ayingabo bonke abantwana abaneengxaki ezifanayo. Unyango oluphambili zezi:

• Utyando: Kufuneka utyando ukuze kulungiswe ezi ngxaki. Ngamanye amaxesha, olu tyando lwenziwa kwiintsuku ezimbalwa emva kokuzalwa komntwana, ngaphambi kokuba kubekho iingxaki ezinkulu. Njengoko umntwana ekhula, kunokufuneka utyando olongezelelweyo.
• Unyango lomzimba okanye unyango lomsebenzi: Olu nyango lunceda ukuqinisa izihlunu nokuphucula intshukumo yamalungu.
• Amayeza: Iindidi ezahlukeneyo zamayeza zinokunikwa ukulawula nokunciphisa iimpawu.

Umnyamekela njani umntwana one-VACTERL syndrome?

Ukufumanisa ukuba umntwana wakho une-VACTERL syndrome kunokuba ngamava anzima. Kodwa khumbula, awuwedwa. Umntwana wakho uya kufuna unyango oluqhubekayo kunye nokubekwa esweni ukulawula iimpawu ebomini bakhe bonke.

Njengomntu onyamekela umntwana, unoxanduva olukhulu.

• Hlala uqaphela impilo nophuhliso lomntwana wakho. Jonga ukuba umntwana wakho ufikelela na kwinqanaba lokukhula elifanelekileyo ngokweminyaka yakhe (umz., ukubamba intloko, ukuqengqeleka, ukuhlala, ukuhamba).
• Hlala unxibelelana noogqirha abanyanga umntwana wakho. Umntwana one-VACTERL uhlala efuna uncedo lweengcali ezininzi (umz., ugqirha wabantwana, ugqirha wentliziyo, ugqirha wotyando, ugqirha wezintso). Gcina ubudlelwane obuhle nabo bonke.
• Ezinye iintsapho zifumana iingcebiso ngemfuza ziluncedo kakhulu. Zinokubanceda bafunde ngakumbi ngemeko yomntwana wabo, baxoxe ngeendlela zonyango, baze bafumane amandla engqondo abawadingayo ukuze bajongane nale ngxaki.

Ngaba i-VACTERL syndrome ingathintelwa?

Ekubeni unobangela ochanekileyo we-VACTERL syndrome ungekaziwa okwangoku, akukho ndlela yokuyithintela. Uphando luyaqhubeka ukuze kuchongwe ukuba yintoni ebangela le meko kunye nokuba zeziphi izinto ezinobungozi ezikhoyo kubazali abatsha.

Luhlobo luni lolindelo umntu onesifo se-VACTERL analo?

Ngexesha lokukhulelwa, thetha nogqirha wakho malunga nendlela wena nomntwana wakho eninokuhlala ngayo nisempilweni. Uvavanyo lwemfuza kunye nonyango lokukhulelwa lunokufumanisa ezinye iimpawu ze-VACTERL ngaphambi kokuba umntwana wakho azalwe. Oogqirha banokulungiselela ukuqala unyango kwangoko emva kokuba umntwana wakho ezelwe.

Emva kokuba umntwana ezelwe, oogqirha baqala ngokujonga ukuba umntwana usempilweni ngokwaneleyo na ukunyanga naziphi na iimpawu ezisongela ubomi. Unyango lunokufuneka ubomi bonke, njengoko iimpawu ezintsha zinokuvela okanye iimpawu ezindala zinokutshintsha ngexesha lobuntwana kunye nokufikisa.

Akukho nyango lwe-VACTERL syndrome. Nangona kunjalo, ngonyango olufanelekileyo nolawulo, umntwana unokuncedwa ukuba aphile ubomi obulungileyo.

Ufanele uye nini kugqirha?

Ukuba umntwana wakho uneempawu ze-VACTERL kwaye ziphazamisana nemisebenzi yakhe yemihla ngemihla okanye ukukhula, qiniseka ukuba ubona ugqirha.

Ixesha lokuya kwigumbi likaxakeka:

• Ukuba ukubetha kwentliziyo yomntwana akuhambelani kakuhle.
• Ukuba awutyi ukutya okanye awuseli ubisi.
• Ukuba unengxaki yokuphefumla.
• Ukuba awukwazi ukukhupha indle okanye ukuchama.

Kwimeko efana nale, musa ukulibazisa nakancinci.

Yeyiphi imibuzo omele uyibuze ugqirha wakho?

Kuqhelekile ukuba nemibuzo emininzi xa ufunda ngemeko yomntwana wakho. Musa ukoyika ukubuza ugqirha wakho yonke into onokuyenza. Nazi ezinye zemizekelo:

• Ngaba umntwana wam udinga utyando?
• Zithini iziphumo ebezingalindelekanga zonyango olucebisayo?
• Ndingenza ntoni ukuba umntwana wam akafikeleli kwinqanaba lokukhula?
• Indlela yokunyamekela umntwana osandul' ukuzalwa emva kotyando?

Ukongeza kule mibuzo, buza nantoni na onayo engqondweni yakho. Oogqirha balapha ukukunceda.

Okokugqibela, izinto ekufuneka uzikhumbule

Iintsana ezisandul’ ukuzalwa zineziphene ezininzi, ngoko ke kuqhelekile ukuziva uxinezelekile xa ufumanisa ukuba awuzukukwazi ukumsa umntwana wakho ekhaya kungekudala. Kodwa khumbula, iqela loogqirha abaziingcali liza kwenza konke okusemandleni alo ukunika umntwana wakho unyango olufunekayo kwaye lisuse naziphi na iimpawu ezinokuba yingozi ebomini.

Abazali abaninzi kunye nabanakekeli bafumana intuthuzelo nolwazi olukhulu kwiinkonzo ezifana neengcebiso zemfuza emva kokufunyaniswa ukuba une-VACTERL syndrome. Ngoko ke, ungathandabuzi ukufuna uncedo kwinkonzo enjalo. Ngonyango olufanelekileyo, uthando, kunye nenkathalo, ngokuqinisekileyo unokunceda umntwana wakho aphile ubomi obungcono kangangoko.

Isifo se -VATER , unxulumano lwe-VACTERL, iingxaki zokuzalwa, iziphene zokuzalwa, impilo yosana, impilo yomntwana, uphuhliso lombungu, iziphene zethambo lomqolo, i-anal atresia, iziphene zentliziyo, i-tracheoesophageal fistula, iziphene zezintso, iziphene zamalungu omzimba, iSri Lanka