Ingaba umntwana wakho ufumana amabala anje? Masifunde nge-Lupus ye-Neonatal!

Kuqhelekile ukuba noloyiko kancinci ukuba ngequbuliso ubona amabala abomvu emzimbeni wosana lwakho, okanye ukuba ugqirha uthi into ethile malunga nokubetha kwentliziyo yomntwana wakho. Ngamanye amaxesha ezi zinto zinokubangelwa yimeko ebizwa ngokuba yi-Neonatal Lupus. Namhlanje, siza kuthetha ngale nto ngokweenkcukacha, njengokuba ubuya kuthetha nomhlobo.

Yintoni i-Lupus ye-Neonatal?

Ngamafutshane, i-Neonatal Lupus yimeko enokuchaphazela usana olusesibelekweni (usana olungekazalwa) okanye kwangoko emva kokuzalwa (usana). Uninzi lwexesha, ibangela utshintsho lwexeshana nolungenabungozi, olufana nokuqhambuka kolusu. Oku kudla ngokuziphelela ngaphambi kokuba umntwana abe nonyaka ubudala. Nangona kunjalo, ngamanye amaxesha i-Neonatal Lupus inokuchaphazela intliziyo yomntwana.

Eyona ngxaki iyingozi enokwenzeka kule meko yi-"autoimmune congenital heart block." Oko kukuthi, le "Neonatal Lupus" ithintela intliziyo yomntwana ukuba ingabetheki kakuhle. Le ngxaki inokuba yingozi ebomini ukuba imbi kakhulu, kodwa inokuhlala inyangwa.

Ukuba umntwana wakho ufunyaniswe ene-Neonatal Lupus, kubalulekile ukulandela imiyalelo yeqela lokhathalelo lomntwana wakho ngononophelo. Baza kuchaza indlela olu xilongo oluya kuyichaphazela ngayo umntwana wakho kunye nokuba unyango luya kufuneka na.

Ingaba oku kunxulumene ne-lupus yabantu abadala (Systemic Lupus Erythematosus - SLE)?

Hayi, musa ukubhidanisa ezi zinto zimbini. I-Lupus yosana olusandul’ ukuzalwa ayisosifo sifanayo neSystemic Lupus Erythematosus (SLE), esidla ngokuyibiza ngokuba yi-lupus. Yimeko eyahlukileyo enezizathu zayo kunye nonyango lwayo.

I-Lupus yosana olusandul’ ukuzalwa ibangelwa ziintlobo ezithile zee-antibodies, ezifana ne-anti-SSA, i-anti-SSB, kunye ne-anti-U1-RNP, ezidluliselwa ukusuka kumama ukuya kumntwana nge-placenta. Ezi antibodies ngokwenene ziiproteni ezihlasela ngempazamo iiseli ezisempilweni emzimbeni wethu. Uninzi lwexesha, ezi antibodies azichaphazeli umntwana okhula esibelekweni. Kodwa ngamanye amaxesha, zinokuhlasela iiseli ezisempilweni zomntwana, ingakumbi iiseli zentliziyo.

I-Neonatal Lupus ifumaneka kuphela kwiintsana ezinoomama abanezi antibodies ezithile. Oku kuthetha ukuba umama unesifo sokuzikhusela komzimba. Umzekelo, i-Sjögren's syndrome, i-SLE, okanye isifo se-mixed connective tissue. Nangona kunjalo, ngamanye amaxesha ezi antibodies zinokubakho emzimbeni ngaphandle kweempawu. Kwezinye iimeko, i-Neonatal Lupus isenokuba luphawu lokuqala lokuba umama unenye okanye ngaphezulu kwezi antibodies kwaye unokuba nesifo sokuzikhusela komzimba kwixesha elizayo.

Khumbula, ukuba unesifo sokuzikhusela komzimba, akuthethi ukuba umntwana wakho ngokuqinisekileyo uza kuba ne-Neonatal Lupus. Enyanisweni, kusenokwenzeka ukuba umntwana wakho angafumani i-Neonatal Lupus. Kodwa, le yinto ekufuneka uyazi kwaye uthethe nogqirha wakho ngayo.

Ixhaphake kangakanani le meko?

I-Lupus yosana olusandul’ ukuzalwa ayiqhelekanga. Eyona ngxaki yayo inzima, i-autoimmune congenital heart block, ichaphazela ngaphantsi kwe-2% yeentsana ezizelwe ngoomama abane-antibodies kwi-anti-SSA, anti-SSB, okanye anti-U1-RNP. Nangona kunjalo, ukuba ukhe waba ne-autoimmune congenital heart block kukukhulelwa kwangaphambili, usemngciphekweni omkhulu wokuba nayo kwakhona kukukhulelwa okulandelayo.

Zithini iimpawu ze-`(I-Lupus yosana olusanda kuzalwa)`?

Uphawu olucacileyo kakhulu kukuqhambuka kwesikhumba. Oku kunokubonwa xa umntu ezalwa, okanye kunokubonakala kwiinyanga ezimbalwa zokuqala zobomi. Olu qhambuka lulolwexeshana kwaye alunabungozi. Lubonakala njengendandatho engqukuva enomphetho onemibala (odla ngokuba bomvu). Indandatho nganye inesiphakathi esicacileyo (oko kukuthi, umbala wesikhumba oqhelekileyo).

Kusenokwenzeka ukuba uza kuzibona ezi zilonda entlokweni yomntwana wakho nasebusweni. Nangona kunjalo, zinokuvela esifubeni, ezingalweni nasemilenzeni. Ezi zilonda ziyafana nezo zibonwa kwimeko ebizwa ngokuba yi-"subacute cutaneous lupus." Yiyo loo nto zibizwa ngokuba yi-"neonatal lupus."

Kukho nezinye iimpawu zexeshana nezingenabungozi. Nazi:

• Ukwehla kwamanqanaba eeseli ezibomvu zegazi (i-anemia).
• Amanqanaba aphantsi eeplatelets (iiseli ezinceda ukujiya kwegazi) (thrombocytopenia).
• Inani eliphantsi leeseli ezimhlophe zegazi (i-neutropenia).
• Amanqanaba aphezulu eeenzyme zesibindi.

Zonke ezi mpawu ziyanyamalala xa ii-antibodies ezivela kumama zisusiwe ngokupheleleyo emzimbeni womntwana. Zihlala ziphucuka phakathi kweenyanga ezi-6 nezi-9 ubudala.

I-Lupus yeentsana ezisandul’ ukuzalwa kunye ne-Heart Block

Njengoko besitshilo ngaphambili, i-Neonatal Lupus inokubangela ingxaki enkulu ebizwa ngokuba yi-autoimmune congenital heart block. Le yingxaki kwinkqubo yombane yentliziyo yomntwana. Ukubetha kwentliziyo yomntwana kulawulwa ziimpembelelo zombane ezihamba entliziyweni. Kwi-Neonatal Lupus, ii-antibodies ezivela kumama zihlasela iqela leeseli ezilawula umsebenzi wombane wentliziyo, ezibizwa ngokuba yi-AV node.

Ngamanye amaxesha oku kubangela utshintsho oluncinci kwisantya sentliziyo yomntwana (ukuvinjwa kwentliziyo kwinqanaba lokuqala okanye lesibini). Oku kunokuphela emva kokuzalwa. Nangona kunjalo, ezinye iintsana zinokuba nokuvinjwa kwentliziyo kwinqanaba lesithathu, okanye ukuvinjwa kwentliziyo epheleleyo, ngenxa ye-Neonatal Lupus.

Kulapho imiqondiso yombane evela kumagumbi aphezulu entliziyo ingenakudlula iye kumagumbi asezantsi. Xa le miqondiso ivalwe ngokupheleleyo, intliziyo ibetha ngokungacwangciswanga, nto leyo eyenza kube nzima ukuba intliziyo yomntwana ipompe igazi elaneleyo emzimbeni. Ukuvaleka kwentliziyo kwenqanaba lesithathu lolona hlobo lunzima kakhulu. Ngamanye amaxesha kunokubulala ngaphambi okanye emva kokuzalwa.

Ukuvaleka kwentliziyo kudla ngokuvela phakathi kweeveki ezili-18 nezingama-24 zokukhulelwa. Oogqirha banokukubona oku ngexesha lokukhulelwa ngokumamela ukubetha kwentliziyo yomntwana. Ukuba isantya sentliziyo sihamba kancinci kunokuba bekulindelwe (esibizwa ngokuba yi-bradycardia), oko kusenokuba luphawu lokuvaleka kwentliziyo.

Zithini izizathu ze-Neonatal Lupus?

Njengoko besitshilo ngaphambili, i-Neonatal Lupus ibangelwa zii-antibodies ezisuka kumama ziye kumntwana nge-placenta. Abaphandi badibanise ezi ntlobo ezithile zee-antibodies ne-Neonatal Lupus:

• `(I-antigen A enxulumene ne-Anti-Sjögren's-syndrome (i-anti-SSA/Ro))`
• `(I-antigen B enxulumene ne-Anti-Sjögren's-syndrome (i-anti-SSB/La))`
• `(I-ribonucleoprotein echasene ne-U1 (i-anti-U1-RNP))`

Ezi `(antibodies)` zifumaneka kubantu abanezifo ezahlukeneyo zokuzikhusela komzimba, ezifana `(Sjögren's syndrome)`, `(SLE)`, `(rheumatoid arthritis)` kunye `(mixed connective tissue disease)`. Nangona kunjalo, ezi `(antibodies)` zinokufumaneka nakubantu abangenazo iimpawu okanye abangakhange bafunyanwe benaso esi sifo.

Xa ezi antibodies zingena emzimbeni womntwana, zinokubangela utshintsho lwexeshana okanye oluhlala luhleli. Abaphandi abakayiqondi ngokupheleleyo indlela ezi antibodies ezibangela ngayo olu tshintsho. Kodwa bayazi ukuba utshintsho olukhulu noluhlala luhleli lusentliziyweni yomntwana .

Xa sele zingaphakathi entliziyweni, ezi antibodies ziqala inkqubo yokudumba, ekhokelela ekwakhiweni kwezicubu ezibomvu. Ezi zicubu ezibomvu zithintela imiqondiso yombane, zithintele intliziyo yomntwana ukuba isebenze kakuhle. Kwiimeko ezimbi kakhulu, oku kunokuba yingozi kwimpilo ngexesha lokukhulelwa okanye kubangele iingxaki ezisongela ubomi emva kokuzalwa.

Sifunyaniswa njani esi sifo `(I-Lupus yosana olusanda kuzalwa)`?

Oogqirha baxilonga i-Lupus yosana olusandul’ ukuzalwa nokuba ngexesha lokukhulelwa okanye emva nje kokuzalwa. Ukuba babona ukuba isantya sentliziyo yosana sihamba kancinci kunokuba bekulindelwe, baya kwenza i-echocardiogram ye-fetal. Olu luvavanyo olukhuselekileyo, olungenantlungu, nolungangenisi. Lunokujonga ulwakhiwo kunye nomsebenzi wentliziyo yosana.

Le `(echocardiogram ye-fetal)` ingabonisa utshintsho olubonisa `(i-Lupus yosana olusandul' ukuzalwa)`. Ukuba kunjalo, ugqirha wakho uza kukuxelela ngobunzima bemeko kunye noko unokukulindela kwixesha elizayo. Baza kujonga negazi lakho ukuba likhona na elo `(ii-antibodies)` ezikhethekileyo.

Ngamanye amaxesha, iimpawu ze-Neonatal Lupus, ezifana nezilonda zesikhumba, zibonakala kuphela emva kokuba umntwana ezelwe. Ukuba oku kuyenzeka, iqela lezonyango liya kwenza uvavanyo lomzimba ukuze lifumanise ezinye izizathu ezinokubangela izilonda. Banokukuvavanya wena, usana lwakho, okanye nobabini ukuze bafumane ii-antibodies ukunceda ekuxilongweni.

Ugqirha wakho uza kukufumanisa ukuba une-Neonatal Lupus ukuba kukho zombini ezi meko:

• Ukuba wena kunye/okanye umntwana wakho `(une-positive)` ye `(anti-SSA)` kunye/okanye `(anti-SSB)` kunye/okanye `(anti-U1-RNP)`.

kwaye

• Ukuba umntwana wakho unempawu enye okanye ngaphezulu eziqinisekisiweyo ze-"Neonatal Lupus".

Inyangwa njani i-Neonatal Lupus?

Unyango luxhomekeke kubukhulu bemeko. Akukho nyango lufunekayo kwizilonda zesikhumba, inani elingaqhelekanga leeseli zegazi, okanye ii-enzymes zesibindi eziphakamileyo. Ezi ngxaki zihlala zisombuluka ngokwazo ngaphantsi konyaka.

Nangona kunjalo, iintsana ezizelwe zinesifo sentliziyo esivalelekileyo zisenokufuna ukufakwa isixhobo esisisigxina sokuncedisa intliziyo ukuba ibethe kakuhle nokuba zizelwe okanye zisebuntwaneni. Le yindlela yotyando yokufakelwa isixhobo sokunceda intliziyo yazo ibethe kakuhle. Iqela lezonyango lomntwana wakho liza kukuxelela okungakumbi ngale nto.

Olunye uphando lubonise ukuba ukuthatha amayeza athile ngexesha lokukhulelwa kunokunciphisa umngcipheko wokuba umntwana wakho abe nokuvaleka kwentliziyo. Ukuba unesifo sokuzikhusela komzimba esifunyenwe sifunyenwe, okanye ukuba uvavanywe ukuba une-antibodies ezithile, ugqirha wakho unokucebisa ukuba uthathe amayeza abizwa ngokuba yi-hydroxychloroquine ngexesha lokukhulelwa. Ukwenza njalo kunokunceda ukukhusela umntwana wakho kwimiphumo emibi kakhulu ye-Neonatal Lupus.

Ithini ingqikelelo yesifo seentsana ezine-Lupus ezisandul’ ukuzalwa?

Imbono yomntwana wakho ixhomekeke kwindlela i-Neonatal Lupus echaphazela ngayo umzimba wakhe. Kwiintsana ezineengxaki zesikhumba, isibindi, kunye/okanye igazi kuphela, imbono ilungile kakhulu. Yonke into kufuneka ibuyele kwisiqhelo kwiinyanga ezi-6 ukuya kwezi-9.

Nangona kunjalo, ukuba i-heart block iyenzeka, imeko inokuba yahluke kakhulu. I-heart block ngamanye amaxesha inokubulala ngaphambi okanye emva kokuzalwa. Iintsana ezininzi ezine-heart block ziya kufuna i-pacemaker esisigxina ngexesha lobuntwana.

Inani elincinci leentsana ezine-Neonatal Lupus linokuthi kamva libe nesifo sokuzikhusela komzimba esifana nale:

• Isifo samathambo esibangelwa yi-Juvenile idiopathic
• I-Psoriasis
• Isifo se-thyroid esizikhuselayo
• Uhlobo loku-1 lweswekile

"Usana ngalunye lwahlukile. I-Lupus yosana olusandul' ukuzalwa isenokuba nefuthe elincinci okanye ingabi nafuthe konke konke kubomi bomntwana wakho. Iqela labo lezonyango liza kukunika iinkcukacha ezithe vetshe malunga noko unokukulindela kunye nendlela yokulungiselela."

Ngaba i-Lupus yeentsana ezisandul’ ukuzalwa ingathintelwa?

Akukho ndlela yokuthintela ii-antibodies ukuba zingaweli kwi-placenta ngelixa ukhulelwe. Nangona kunjalo, ungathintela umonakalo omkhulu entliziyweni yomntwana wakho, okanye ubuncinane ucebe kwangaphambili naluphi na unyango umntwana wakho anokulufuna emva kokuzalwa. Ukuba uvavanywe ukuba une-anti-SSA, anti-SSB, okanye anti-U1-RNP, ugqirha wakho unokucebisa oku kulandelayo:

• Ukusela amayeza athile kwangethuba ekukhulelweni naxa ukhulelwe kunokunceda ekukhuseleni umntwana ekubeni angabi naziphene zentliziyo.
• Ukuhlolwa kwentliziyo evaliweyo (ii-echocardiograms ze-fetal) ukususela kwiiveki ezili-16 zokukhulelwa.
• Ukujonga ukusebenza kwentliziyo yomntwana kwinyanga yokuqala yobomi bakhe. Oku kukujonga iimpawu zokuvaleka kwentliziyo (ukuba azikabonakali), njengoko ezinye iintsana zingabonakalisi zimpawu de kube ziiveki ezimbalwa emva kokuzalwa.

Ndingalufuna nini uncedo lwezonyango?

Kubalulekile ukulandela ishedyuli yovavanyo kunye neyokuqeshwa enikiweyo liqela lezonyango lomntwana wakho ngokuchanekileyo. Baza kukuxelela ukuba umzise kangaphi umntwana wakho ukuze ahlolwe kwaye alandelelwe.

Kubalulekile nokunyamekela impilo yakho. Ukuba uvavanywe ukuba une-antibodies ezithile kodwa ungenazo iimpawu zesifo sokuzikhusela komzimba, ugqirha wakho unokukuthumela kwi-rheumatologist, ugqirha ogxile kwiintlungu zamalungu kunye nezifo ezinxulumene noko. Oku kungenxa yokuba kukho ithuba lokuba unokufumana isifo sokuzikhusela komzimba kwiminyaka embalwa ezayo. Ugqirha wakho uza kukuchazela into onokuyilindela aze akujonge ngokusondeleyo ukuze ufumane unyango ngoko nangoko.

Yeyiphi imibuzo endifanele ndiyibuze ugqirha womntwana wam?

Le mibuzo inokukunceda ufunde okungakumbi nge-Neonatal Lupus emva kokuxilongwa:

• I-Lupus yosana olusandul’ ukuzalwa iza kuyichaphazela njani i-pregnancy yam/usana lwam?
• Ziziphi iindlela zonyango ezikhoyo?
• Ithini ingqikelelo?
• Lingakanani ithuba lokuba i-Neonatal Lupus iya kuchaphazela ukukhulelwa kwixesha elizayo?

Ngaba abantu abadala banokuba ne-"Neonatal Lupus"?

Hayi, i-Neonatal Lupus ayisiyonto ixhaphakileyo kubantu abadala. Ifunyaniswa kuphela kwiimveku nakwiintsana. I-Neonatal Lupus ayifani ne-lupus yabantu abadala.

I-Systemic Lupus Erythematosus (SLE), esiyibiza ngokuba yi-lupus, yimeko yokuzikhusela komzimba echaphazela abantwana kunye nabantu abadala. I-SLE ichaphazela umzimba wonke kwaye ifuna unyango kunye nokubekwa esweni ubomi bonke.

I-Lupus yosana olusandul’ ukuzalwa ichaphazela kuphela iinyanga zokuqala zobomi bosana. Ayikhuli kamva ebuntwaneni okanye ebudaleni.

Nangona kunjalo, nokuba i-Neonatal Lupus ayifunyaniswanga de kube semva kokuzalwa, inokuba nemiphumo ehlala ixesha elide emzimbeni womntu. Eyona ngxaki inzima kukuxinana kwentliziyo, okunokufuna umntu osebenza nge-pacemaker ubomi bakhe bonke. Olunye uphando lubonisa ukuba iintsana ezine-Neonatal Lupus zinokuba semngciphekweni omkhulu wokufumana izifo zokuzikhusela komzimba kamva ebomini.

Ukuba ubune-Neonatal Lupus usengumntwana, thetha nogqirha wakho ukuze ufumane ukuba loluphi uhlobo lokuhlolwa okanye uvavanyo onokulufuna njengoko ukhula.

Xa ukhulelwe kwaye ufumana ukuxilongwa ngolu hlobo kosana olusandul’ ukuzalwa, kunokuba nzima kakhulu kwaye kuxhalabise. Kunokuba nzima kakhulu ukungazi ukuba kuza kwenzeka ntoni njengoko ukukhulelwa kwakho kuqhubeka. Akukho nto imbi ngokwabelana ngoloyiko lwakho kunye neenkxalabo zakho neqela lakho lezonyango. Baza kwenza konke okusemandleni abo ukukunceda uqonde okwenzekayo kunye noko unokukwenza ukukunceda ube nokukhulelwa okunempilo.

Ukuba umntwana wakho ufunyaniswe enesifo emva kokuzalwa, unokufuna ukujongwa kuyo yonke inyanga yokuqala yobomi bakhe ukuze kuhlolwe ukusebenza kwentliziyo yakhe. Basenokuba nezilonda zesikhumba ezihlala iinyanga ezininzi. Iqela lezonyango lomntwana wakho liza kuchaza into omawuyilindele kwaye linike inkxaso kuwe nakusapho lonke.

Izinto ekufuneka sizikhumbule kweli bali

Kulungile, makhe siphinde sichaze ezinye zezona zinto zibalulekileyo malunga ne-Neonatal Lupus esithethe ngazo:

• I-Lupus yosana olusandul’ ukuzalwa yimeko eyenzeka kwiintsana ezisandul’ ukuzalwa ngenxa yee-antibodies ezikhethekileyo ezidluliselwa kumama ukuya kumntwana.
• Oku akufani ne-lupus (SLE) eyenzeka kubantu abadala.
• Uninzi lwexesha, iimpawu zezokwexeshana kwaye azinabungozi, njengezilonda zesikhumba. Ezi ziya kuphola kwisithuba seenyanga ezi-6-9.
• Nangona kunjalo, ezinye iintsana zinokuba nesifo esibi esibizwa ngokuba yi-congenital heart block, esinokufuna i-pacemaker.
• Ukuba umama unesifo sokuzikhusela komzimba, okanye ukuba unee-antibodies ezithile (i-anti-SSA, i-anti-SSB), kubaluleke kakhulu ukuxoxa ngale nto nogqirha ngexesha lokukhulelwa.
• Uninzi lweentsana luyaphila ngokupheleleyo kule meko. Ukuba kuvela iingxaki zentliziyo, zinokunyangwa.
• Ukuba unemibuzo okanye amathandabuzo, ungoyiki ukubuza ugqirha. Bakhona ukukunceda.

"I-Lupus yosana olusandul' ukuzalwa, iintsana ezisandul' ukuzalwa, izifo zeentsana, ukuvalwa kwentliziyo, ukuzikhusela komzimba, ii-antibodies zoomama, ukurhawuzelelwa lusu