“I-CHD yinyani kwaye sinjalo nathi”: Brave Little Hearts South Africa
IBrave Little Hearts South Africa (BLHSA) liqela lenkxaso kunye nenkxaso kubazali babantwana abanesifo sentliziyo esizalwa nabo (i-CHD). I-BLHSA izama ukuphakamisa ulwazi nge-CHD ngokuququzelela kunye nokuphumeza iinkqubo zenkxaso kwiintsapho ezine-CHD, kunye nokukhuthaza ngokudala amaqonga kwinkalo yezonyango yokuzibandakanya malunga nemibandela ebalulekileyo ye-CHD. I-BLHSA ikwaneenkqubo zesikolo apho sifundisa abantwana kwakunye nabasebenzi nge-CHD.
I-Brave Little Hearts SA yasekwa ngembeko yentombi yethu, u-Thaakirah Matthews, owazalwa enesiphako esibi kakhulu sentliziyo esingafunyaniswanga ekuzalweni kwakhe. U-Thaakirah wazalwa ene-double outlet right ventricle (DORV), ukutshintshwa kwe-arteries enkulu (TGA), i-pulmonary stenosis (PS), kunye ne-ventricular septal defect (VSD). Imeko ye-Thaakirah ihlelwe ngokwezibalo njenge-1 kwi-500 000 ewela kwi-1-3% yeemeko ze-CHD zehlabathi.
Ndamitha eqhelekileyo, kwaye zonke ukuhlolwa kwam kwangaphambi kokubeleka kuyabonakala ukuba kwacaca. Emva kokuba u-Thaakirah azalwe wayenombala "ongaqhelekanga" kodwa ndaxelelwa ukuba kungenxa yamahomoni am asekho kwinkqubo yakhe kwaye ngokuhamba kwexesha umbala wakhe uya kutshintsha. Esbhedlele kwakunzima nokuncancisa kodwa ndaphinda ndaxelelwa ukuba kuzothatha ixesha qha kufuneka ndinyamezele. Kwiintsuku ezimbalwa emva koko sakhululwa kwaye sanikwa ingxelo ecocekileyo yempilo. Kodwa kum uThaakirah akazange abonakale kakuhle. Ekuhlolweni kwakhe kokuzalwa, ndaphinda ndambuza umbala wakhe. Umzimba wakhe ukusuka phezu kweempundu ukuya ekupheleni kweenyawo wawunombala omfusa onzulu. Imilebe yakhe, ulwimi, kunye nongaphakathi womlomo wakhe wawukwanguloo mbala umfusa unzulu. Kodwa iinkxalabo zam zachithwa. Ngenxa yokuba u-Thaakirah wayezama ukutyeba ndandikwikliniki yengingqi yonke imihla ukuze ndincedise ekondleni. Kwaye kutyelelo ngalunye ndandiye ndibuze ukuba ulungile na kuba kum, wayengabonakali “elungile”. Nangona wayengqongwe ngabasebenzi bezonyango (bobabini babucala kunye noorhulumente) phantse yonke imihla, imeko yentliziyo kaThaakirah ayizange ibonwe.
Ngeenyanga ze-3 u-Thaakirah wagula ngenxa yohudo olwabangela ukuba siye kwisibhedlele sasekhaya apho ugqirha wamjonga kwaye wathi, "Intombi yakho inesifo senhliziyo." Kwaye yindlela uhambo lwethu ne-CHD olwaqala ngayo ngokusemthethweni.
Kwelinye icala ndandivuya kwaye ndixolile kuba ekugqibeleni ndiyazi into engalunganga ngoThaakirah, kodwa kwelinye icala ……
Amanqanaba e-oksijeni ye-Thaakirah ekuxilongeni kwakuyi-55%. Lwakuba luphelile utyando lwakhe, wenziwa utyando lwentliziyo lokuqala. Kwiinyanga ezimbalwa ezizayo de uThaakirah wagqiba iminyaka emi-2 isibhedlele saba likhaya lethu lesibini. Bendine bag yesbhedlele ndahlala ndapakishwa kuba qho emva kweveki besingena. Ngethamsanqa, ngeli xesha bendizazi iimpawu kunye neempawu ze-CHD kunye nento ekufuneka uyijonge.
Ngo-2013, ugqirha otyeleleyo we-cardiothoracic ovela eFransi weza eMzantsi Afrika ukuze enze utyando lokulungisa u-Thaakirah kodwa waba nosulelo lwendlebe kunye nomqala, kwaye utyando lwarhoxiswa. Ngelixa umzimba wakhe omncinane wawusilwa nosulelo, wabonakalisa iimpawu zokukhubazeka kobuso waza walaliswa kwiwadi yentliziyo kwiSibhedlele saBantwana seRed Cross War Memorial eKapa, eMzantsi Afrika. Emva kosuku, waphulukana nokushukuma kwelinye icala lomzimba wakhe kwaye emva kweskeni seMRI, iingcali zemithambo-luvo zafumanisa amathumba amabini akhula ebuchotsheni bakhe - elinye liphezu kwengqondo yakhe kwaye elinye kumbindi wengqondo yakhe kwindawo engaphantsi kwe-2mm. ububanzi. Oku kubangele amahlwili egazi osulelekileyo awayesuka kwelinye igumbi lentliziyo ukuya kwelinye aze anyukele ebuchotsheni bakhe.
Ngomhla we-12 kaJulayi 2013, ii-Neurosurgeons zenze utyando olungxamisekileyo kwithumba elikumphezulu wobuchopho bakhe, kodwa ithumba lesibini elalisembindini wengqondo yakhe lalikhula ngokukhawuleza kwaye litshabalalisa yonke into esendleleni yalo. Usuku ngalunye oludlulayo ukukhubazeka kwakusiba kubi ngakumbi kwaye uThaakirah waqalisa ukungaboni kakuhle nokuthetha. Ngomhla we-16 Julayi 2013 oogqirha botyando lwemithambo-luvo benza umnqweno we-stereotactic neuronavigational-guided of the ithumba besebenzisa iCape Town Stereotactic Pointer, eyilwe liqela leengcaphephe zaseKapa. Olu tyando aluzange lwenziwe iminyaka kwiSibhedlele saBantwana seRed Cross War Memorial kwaye ingozi yayikukukhubazeka okanye ukungavuki emva kotyando. Inkqubo yaba yimpumelelo, kwaye u-Thaakirah wachacha ngokuncomekayo emva kwexesha lokhathalelo olunzima kwiyunithi yokhathalelo lwabantwana esibhedlele - eyona ICU inkulu kubantwana e-Afrika. Nangona kunjalo, olu hambo lokulaliswa esibhedlele lwalungekapheli ku-Thaakirah njengoko iziphene zentliziyo yakhe zaziseyingozi.
Emva kokubandezeleka kwentliziyo ye-2 ekuqaleni kwe-2014, u-Thaakirah wayenenkqubo ye-Nikaidoh-bex eyenziwa ngugqirha we-cardiothoracic, uGqr André Brooks - inkqubo yotyando lokuqala lolo hlobo entliziyweni yomntwana kwi-Red Cross War Memorial Children's Hospital. Nge-3 kaDisemba 2023 uThaakirah uya kube ebhiyozela i-13 yakheth usuku lokuzalwa.
Emva kokuxilongwa, ukujonga ngasemva zonke iimpawu zazikhona: umbala oluhlaza okwesibhakabhaka, ukuphefumula okufutshane, ubunzima bokutyisa, ukugquma, kunye nokubila kakhulu. Ukungabi nalwazi kwakunokukhokelela kokunye ukufa. Kodwa i-Thaakirah ayizange ibe yizibalo. Waba ngumthombo wenkuthazo nethemba kwabanye.
IBrave Little Hearts SA eyona mpumelelo inkulu:
• In July 2016 I-BLHSA iququzelelwe 2 utyando lwentliziyo oluyimpumelelo kuzo zombini eKenya naseKurdistan ngokulandelelana.
• In July 2017, saba lilungu elisungulayo Global ARCH.
• In 2018, unozakuzaku weBLHSA uThaakirah kunye nodade wabo, uSumayyah, bayinxalenye yeRX Radio SA (isikhululo sikanomathotholo esizinze kwiSibhedlele saBantwana seRed Cross War Memorial esiqhutywa ngabantwana babantwana) apho baye benza udliwano-ndlebe noogqirha nabongikazi malunga ne-CHD.
• In 2019 I-BLHSA yawongwa nge Ubume beMbasa yePlatinam ngegalelo lethu ngexesha lephulo loKwazisa ngoSuku lweHlabathi lokuZalwa ngeziphene. Kwihlabathi jikelele imibutho eyi-172 ethathe inxaxheba kweli phulo lokwazisa.
• Ngo-2019 iBLHSA yanikela ngomatshini we-echo ofuneka kakhulu kwiSibhedlele sePhondo kunye neCecilia Makiwane eMpuma Koloni.
• I-3 ngoDisemba 2019, I-Popsicle Initiative yasungulwa, eyi Uvavanyo lwe-pulse oximetry olusanda kuzalwa kubo bonke abasanda kuzalwa kwiSibhedlele sokuBeleka sase-Mowbray eKapa eMzantsi Afrika. (Olu asilovavanyo olusisinyanzelo eMzantsi Afrika)
• Nge-3 kaDisemba 2020 ngentsebenziswano neSebe lezeMpilo lePhondo leNtshona Koloni, iBrave Little Hearts SA iye yamisela uSuku lokuqala loMzantsi Afrika olwaphunyezwa liPhondo lweSizwe lweZiphene zeNtliziyo ezizalwayo.
• In 2023, I-BLHSA yaya kwaye yathatha inxaxheba kwiNkongolo yeHlabathi ye-8 ye-Pediatric Cardiology kunye noTyando lwe-Cardiac eWashington DC.
Imicelimngeni emikhulu esijongene nayo kukunqongophala kolwazi nokuqonda nge-CHD ngabazali noluntu njengoko bengabuqondi ubunzulu bale meko. Amava ethu kunye nophando lubonisa ukuba akukho ingqwalasela eyaneleyo ebekwe ekubonweni kwesifo senhliziyo esizelwe ngaphambi okanye ekuzalweni.
I-BLHSA inethemba lokufundisa abazali, abanonopheli, kunye noluntu ngeempawu kunye neempawu ze-CHD, ngaloo ndlela ibanika ulwazi lokuzixhobisa kwaye bathethelele abantwana babo xa bephuma esibhedlele.
I-BLHSA ingathanda ukuba i-CHD ibe ligama lekhaya.
I-BLHSA ingathanda ukuba wonke umntwana ozelwe ene-CHD abe nethuba lokulwa ebomini.
"Ukunceda Ukulungisa – Iintliziyo ezincinci ezaphukileyo Intliziyo enye - Ngexesha"
#CHDisReal
