“I-CHD ingokoqobo kanjalo nathi”: Brave Little Hearts South Africa
I-Brave Little Hearts South Africa (BLHSA) iyiqembu elisekela kanye nokumela abazali bezingane ezine-congenital heart disease (CHD). I-BLHSA ilwela ukuqwashisa nge-CHD ngokulungiselela nokusebenzisa izinhlelo zokweseka imindeni ene-CHD, kanye nokumela ngokwakha izinkundla emkhakheni wezokwelapha ukuze kuxoxwe ngezindaba ezibucayi ze-CHD. I-BLHSA iphinde ibe nezinhlelo zesikole lapho sifundisa khona izingane kanye nabasebenzi nge-CHD.
I-Brave Little Hearts SA yasungulwa ngenjongo yokuhlonipha indodakazi yethu, u-Thaakirah Matthews, owazalwa enesifo senhliziyo esibucayi esingazange sitholakale lapho sizalwa. U-Thaakirah wazalwa ene-double outlet right ventricle (DORV), ukuguqulwa kwemithambo emikhulu (TGA), i-pulmonary stenosis (PS), kanye ne-ventricular septal defect (VSD). Isimo sika-Thaakirah ngokwezibalo sibalwa njengesi-1 kwezingu-500 000 esiwela ku-1-3% wezigameko ze-CHD zomhlaba jikelele.
Ngaba nokukhulelwa okuvamile, futhi konke ukuhlolwa kwami ngaphambi kokubeletha kubonakala kwacaca. Ngemva kokuzalwa kuka-Thaakirah waba nombala “ongavamile” kodwa ngatshelwa ukuthi kwakungenxa yamahomoni ami ayesekhona ohlelweni lwakhe futhi ngokuhamba kwesikhathi umbala wakhe uzoshintsha. Ngesikhathi sisalele esibhedlela, ngadonsa kanzima ukuze ngincelise, kodwa ngaphinde ngatshelwa ukuthi kwakuzothatha isikhathi futhi kwadingeka ngibekezele. Ezinsukwini ezimbalwa kamuva sakhululwa futhi sanikezwa incwadi yempilo ehlanzekile. Kodwa kimina uThaakirah akazange abukeke kahle. Ekuhlolweni kwakhe kokubeletha, ngaphinda ngambuza umbala wakhe. Umzimba wakhe kusukela ngenhla nje ezinqeni kuye ekupheleni kwezinyawo wawunombala onsomi ojulile. Izindebe zakhe, ulimi, kanye nengaphakathi lomlomo wakhe kwakulowo mbala onsomi ojulile ofanayo. Kodwa ukukhathazeka kwami kwachithwa. Ngenxa yokuthi u-Thaakirah wayedonsa kanzima ukuze akhuluphale ngangiba semtholampilo wendawo nsuku zonke ukuze ngisize ngokuphakelayo. Futhi ekuvakasheni ngakunye ngangimbuza ukuthi uyaphila yini ngoba kimi, ubengabukeki “elungile”. Naphezu kokuba ezungezwe abasebenzi bezokwelapha (kokubili abazimele nabakahulumeni) cishe nsuku zonke, isimo senhliziyo sika-Thaakirah esibucayi asizange sinakwe.
Enezinyanga ezi-3 u-Thaakirah wagula ephethwe isifo sohudo okwaholela ekutheni siye esibhedlela sakithi lapho udokotela wambheka wathi, “Indodakazi yakho inesifo senhliziyo.” Futhi yindlela uhambo lwethu ne-CHD olwaqala ngayo ngokusemthethweni.
Ngakolunye uhlangothi ngajabula futhi ngakhululeka ngokuthi ekugcineni ngangazi ukuthi yini eyayingalungile ngoThaakirah, kodwa ngakolunye uhlangothi......
Amazinga komoya-mpilo ka-Thaakirah ekuxilongeni ayengama-55%. Lapho isifo sohudo sesiphelile, wahlinzwa inhliziyo okokuqala. Ezinyangeni ezimbalwa ezalandela kwaze kwaba yilapho uThaakirah eba neminyaka emi-2 isibhedlela saba ikhaya lethu lesibili. Isikhwama sasesibhedlela ngangisipakishe unomphela ngoba njalo ngemva kwamasonto sasingeniswa. Ngenhlanhla, kulokhu ngangazi izimpawu nezimpawu ze-CHD nokuthi yini okufanele ngiyibheke.
Ngo-2013, udokotela ohlinza inhliziyo ovakashile ovela eFrance weza eNingizimu Afrika ezohlinza u-Thaakirah kodwa waba nenkinga yendlebe nomphimbo, futhi ukuhlinzwa kwakhanselwa. Ngesikhathi umzimba wakhe omncane ulwa nalesi sifo, wakhombisa izimpawu zokukhubazeka ebusweni futhi wangeniswa ewodini lenhliziyo eSibhedlela Sezingane Sezingane iRed Cross War Memorial eKapa, eNingizimu Afrika. Ngemva kosuku, walahlekelwa ukunyakaza ohlangothini olulodwa lomzimba wakhe futhi ngemva kokuthwetshulwa kwe-MRI, odokotela bezinzwa bathola amathumba amabili akhula ebuchosheni bakhe - elinye phezu kobuchopho bakhe nelinye enkabeni yethambo lakhe lobuchopho endaweni engaphansi kuka-2mm. ububanzi. Lokhu kwakubangelwa amahlule egazi angenwe yileli gciwane ayesuka kwelinye igumbi lenhliziyo aye kwelinye akhuphukele ebuchosheni bakhe.
Ngomhla ziyi-12 kuJulayi 2013, odokotela abahlinzayo be-Neurosurgeon bamhlinza ngokuphuthumayo ithumba elaliphezu kobuchopho bakhe, kodwa ithumba lesibili elaliphakathi nendawo yobuchopho bakhe lalikhula ngokushesha kakhulu futhi libhubhisa yonke into esendleleni yalo. Usuku nosuku ukukhubazeka kwaba kubi kakhulu futhi uThaakirah waqala ukulahlekelwa amehlo akhe nokukhuluma. Ngomhla ziyi-16 kuJulayi 2013 odokotela abahlinza imizwa benza ithumba eliqondiswe nge-stereotactic neuronavigational besebenzisa i-Cape Town Stereotactic Pointer, eklanywe ithimba lochwepheshe baseKapa. Lokhu kuhlinzwa kwase kuyiminyaka kungenziwa esibhedlela Sezingane i-Red Cross War Memorial futhi ingozi yayiwukukhubazeka noma ukungavuki ngemva kokuhlinzwa. Inqubo yaba yimpumelelo, futhi u-Thaakirah walulama kahle ngemva kwesikhathi sokunakekelwa okubucayi egunjini labagula kakhulu esibhedlela - okuyi-ICU enkulu kunazo zonke ezinganeni e-Afrika. Nokho, lolu hambo lokungeniswa esibhedlela lwalungakapheli kuThaakirah njengoba ukukhubazeka kwenhliziyo yakhe kwakuseyingozi.
Ngemva kokwehluleka kwenhliziyo oku-2 ekuqaleni kuka-2014, u-Thaakirah wathola inqubo ye-Nikaidoh-bex eyenziwa udokotela ohlinzayo wenhliziyo, uDkt André Brooks - okuyindlela yokuqala yokuhlinzwa yohlobo lwayo enhliziyweni yengane e-Red Cross War Memorial Children's Hospital. Ngomhla zi-3 kuZibandlela wezi-2023 u-Thaakirah uzobe egubha iminyaka engu-13th usuku lokuzalwa.
Ngemuva kokuxilongwa, ukubheka emuva zonke izimpawu zazikhona: umbala oluhlaza okwesibhakabhaka, ukuphefumula kanzima, ubunzima bokuncelisa, ukungqubuzana, nokujuluka kakhulu. Ukuntula ulwazi kwakungabangela okunye ukufa. Kodwa uThaakirah akazange abe yizibalo. Waba umthombo wogqozi nethemba kwabanye.
Izimpumelelo ezinkulu ze-Brave Little Hearts SA:
• In July 2016 I-BLHSA yenziwe lula 2 ukuhlinzwa kwenhliziyo okuyimpumelelo eKenya naseKurdistan ngokulandelana.
• In July 2017, saba yilungu elisungula le Global ARCH.
• In 2018, inxusa le-BLHSA u-Thaakirah kanye nodadewabo, u-Sumayyah, bakha ingxenye ye-RX Radio SA (umsakazo ozinze eSibhedlela Sezingane Se-Red Cross War Memorial esiphethwe yizingane zezingane) lapho baxoxisane nodokotela nabahlengikazi mayelana ne-CHD.
• In 2019 I-BLHSA yaklonyeliswa nge Isimo se-Platinum Partner Award ngeqhaza lethu emkhankasweni Wokuqwashisa NgoSuku Lomhlaba Lokukhubazeka Kokuzalwa. Emhlabeni jikelele izinhlangano eziyi-172 ezibambe iqhaza kulo mkhankaso wokuqwashisa.
• Ngo-2019 i-BLHSA yanikela ngomshini we-echo odingeka kakhulu esibhedlela seProvincial & Cecilia Makiwane eMpumalanga Kapa.
• I-3 Disemba 2019, I-Popsicle Initiative yethulwa, okuyi- ukuhlolwa kwe-pulse oximetry okusanda kuzalwa kuzo zonke izingane ezisanda kuzalwa esibhedlela sase-Mowbray Maternity eKapa eNingizimu Afrika. (Lokhu akusikho ukuhlolwa okuyimpoqo eNingizimu Afrika)
• 3 Disemba 2020 ngokubambisana noMnyango Wezempilo Wesifundazwe SaseNtshonalanga Kapa, i-Brave Little Hearts SA yethule uSuku Lukazwelonke Lwezifo Zenhliziyo Yokuzalwa eNingizimu Afrika olugunyazwe yisiFundazwe.
• In 2023, I-BLHSA ihambele futhi yahlanganyela kwiNgqungquthela Yesi-8 Yomhlaba Yezinhliziyo Zezingane Nokuhlinzwa Kwenhliziyo eWashington DC.
Izinselelo ezinkulu esibhekene nazo ukuntula ulwazi nokuqonda nge-CHD ngabazali nemiphakathi njengoba ingaqondi ubucayi besimo. Ulwazi lwethu nocwaningo lubonisa ukuthi akukho ukugxila okwanele okubekwa ekutholweni kwesifo senhliziyo esizalwa naso ngaphambi noma ngesikhathi sokuzalwa.
I-BLHSA inethemba lokufundisa abazali, abanakekeli, kanye nomphakathi ngezimpawu nezimpawu ze-CHD, ngaleyo ndlela ibanike ulwazi lokuzithuthukisa futhi bamelele izingane zabo uma seziphumile esibhedlela.
I-BLHSA ingathanda ukuthi i-CHD ibe igama lasekhaya.
I-BLHSA ingathanda ukuthi yonke ingane ezalwa ine-CHD ibe nethuba lokulwa empilweni.
"Ukusiza Ukulungisa - Izinhliziyo Ezincane Eziphukile Inhliziyo Eyodwa - Ngesikhathi"
#CHDisReal
