Namhlanje siba nodliwanondlebe noBelén F. umama olwa yonke imihla ngentlalo-ntle yabantwana bakhe ababini, ngakumbi eyentombi yakhe uSusi, osandula kuhlinzwa ngenxa yokungalunganga kuka-Arnold Chiari.
MH: Molo uBelén, basixelele ukuba uSusi ligorha elikhethekileyo kwaye wena, njengomama wakhe, unguye, umnika umzekelo wamandla asisiseko. Khawusixelele okungakumbi malunga nawe kunye nokugula kwakho.
UBhelen:Silusapho oluvela eMalaga, oneminyaka emi-3 neenyanga ezi-8 ezidlulileyo sinamawele, owokuqala yayinguSusi owazalwa ene-1'990kg kunye noHugo ene-2kg, bazalwa ngokuzalwa kwendalo ngama-35 + 5.
Ngokukhawuleza nje emva kokuzalwa kwakhe, oogqirha babona into engaqhelekanga ngaye, wazalwa eneliliso lasekhohlo elidumbile kwaye enobuso obumfusa.
Ukusuka kumzuzu wokuqala, baqala ukwenza ii-ultrasound kunye neemvavanyo kodwa khange banike ngqo le wayenayo.
Kude kube ziintsuku ezingama-21 kamva ukuxilongwa kokukhutshwa kukuba intombazana yayinesifo esinqabileyo. Wayene-encephalocele ye-orbital (ukunqongophala kwethambo eluphahleni lwe-orbital lweliso lasekhohlo, kwaye kwakukho ubunzima be-encephalic).
MH: Kuthathe ixesha elingakanani ukufumana uxilongo oluchanekileyo?
UBhelen:Uxilongo oluchanekileyo… .umkhuhlane… kulungile andinakuxelela ukuba kutheni ngalo lonke ixesha enziwe utyando kwaye njengoko iinyanga zihamba, kuvela into entsha.
MH: Ukusukela namhlanje, yintoni kanye kanye isifo sakho?
UBhelen:Yonke le nto yaqala nge-encephaloceum ye-orbital, emva koko wahlinzwa kwaye indawo engaphambili yobuso / yentloko yala into eyenziweyo enokufakwa, unoxinzelelo kwicala lasekhohlo lobuso, ulusu kuloo ndawo. Ucoceke ngakumbi, une-craniosynostosis, kwi-2016 ukuba andiphazami wafunyanwa ene-Arnold Chiari uhlobo I ngokuzalwa ukuya kwi-c2, ngoFebruwari 2017 baqinisekisa ukuba unoxinzelelo oluphezulu lwangaphakathi (ICP) kwaye ngoku ngoJanuwari 2018, njengo Isiphumo sokusebenza kweArnold Chiari hydrocephalus kubangelwe ...
Ukuxilongwa kwayo yonke into akunagama kuba njengoko ubona, zininzi izinto, kodwa eyona nto iphambili kwaye njengoko zifaka zonke iingxelo zezi: i-orbital encephalocele, craniosynostosis, Arnold Chiari uhlobo I kunye nehydrocephalus, ukushwankathela yonke into.
MH: Yiza, eneneni, owona mbuzo unzima kakhulu abanokukubuza wona ngowokuba unantoni na intombi yakho. Ngaba bakhe bakubuze esitratweni? Ukuba kunjalo, ngaba uziva ungonwabanga okanye uyichaza ngaphandle kwengxaki?
UBhelen:Inyani yile, lo mbuzo kunzima kakhulu ukuba ndiwuphendule, kuba zininzi izinto ezinazo, kwaye ngekhe wazi apho izinto zinokuphelela khona ...
Amaxesha amaninzi ndiye ndacelwa kwaye ndaphendula, kodwa akhona amaxesha endibiza kakhulu. Eyona nto imbi kakhulu endiyinxibayo kukuba bamjonge ngokungathi yinto engaqhelekanga ngenxa yokujongeka kobuso.
MH: Ngoku ndiza kukubuza imibuzo enzima kancinci ... kodwa kuya kufuneka ndiyibuze kuba into esiyifunayo kukwenza abantu bazi ukuba banobuntununtunu, kanye le undixelela yona. Ukuba ngasemva kolo deformation, kukho ibali.
UBhelen: Kulungile ungakhathazeki.
MH: Ngaba uyaqonda ukuba wahlukile? Ngaba unokuphila ubomi obuqhelekileyo?
UBhelen: Ewe ukrelekrele kakhulu, into eyenzekayo kukuba ekubeni ekhumbula into anayo kwaye kwenzeka ntoni kuye.
MH: Intle kakhulu sukuxoka ebantwaneni, njengoko usitsho, abazizo izidenge kwaye bayazi kakuhle ukuba kwenzeka ntoni.
UBhelen: Kwaye naye uyakubuza ... ngoku, ukuxelela ukuba "umhlobo wakhe unayo ivalve" ... kuba kuye kwafuneka babeke iivalve ezimbini ukuze balawule ihydrocephalus. Ndicinga ukuba okukhona usazi izinto, kokukhona unokusebenzisana, nokuba uneminyaka emi-3 kuphela ubudala, uya kuba neminyaka emi-4 ngoJulayi.
Kuya kufuneka azi ukuba unemiqathango, ukuba ngoku akanakukwazi ukuya esikolweni kuba akasenazo iivalve ezilungiswe kakuhle, ngoku kule veki izayo kufuneka benze iMRI kwaye uyazi ukuba sisithombe esincinci ukubona ukuba mncinci kangakanani Intloko ingaphakathi ... Ukuze angazibethi ngenxa yokuba kunokuba yingozi kakhulu, kufuneka sizame ukungabinamsindo ukuze uxinzelelo lwakhe lunganyuki, njl.
MH: Ukuqonda njani ukugula kwakhe kwaye umelana njani nako?
UBhelen:U ... inyani yobudala bakhe kukuba uphilile, nangona oku kwamkelwa kokugqibela (ukusuka nge-19/12/17 ukuya nge-02/0218) kuye kwaba nzima kakhulu kuye, kuye wonke umntu ...
Ngoku ngoku xa wayephuma esibhedlele wayengasakwazi nokuhamba, wafika ekhaya wafuna ukuya phezulu kwaye akakwazanga ...
Inyani yile yokuba ibisenzeka rhoqo ... kodwa namhlanje, bekuyinyanga ukusukela oko yaphuma kwaye itshintshe kakhulu.
MH: Injani yonke le ntsapho?
UBhelen:Ukufika ekhaya kunzima kakhulu, iinguqu ezininzi kuye nakubhuti wakhe, asikhe sithethe ngehlwempu, kodwa yena, ngendlela yakhe, naye ukhathazwa yindlela yakhe….
Usokola kakhulu, kwaye uziva unomsindo ngoba bobabini ngabantwana bakho, baligazi lakho kwaye bobabini bayasidinga, kodwa kuyacaca ukuba uSusi uhlala engoyena mntu unikwa ingqwalaselo kwaye ngaphezulu koko, wonke umntu uhlala ebuza ngaye ... kodwa uHugo Ungumntwana omangalisayo, onenkani kakhulu kodwa uyamthanda udade wabo, nokuba bayazibulala.
MH: Loluphi uhlobo loncedo ocinga ukuba luya kuba lolona lubalulekileyo kwimeko yakho, kwezokuziphatha, kwezemali, nenkxaso yezengqondo?
UBhelen:Ewe, udinga intwana yayo yonke into ... Ezoqoqosho kuba ukuhlala esibhedlele kwaye uhlala uhlolwa kubandakanya iindleko ezininzi, ezengqondo kuba kunzima ukucinga ukuba intombi yakho eneminyaka emithathu inakho konke enako, xa ukukhulelwa kwakungekho ngxaki. Kwaye njengokuba ekhula okanye emqhuba, kuphuma izinto ezintsha, ke kunzima kakhulu ngokwasekhaya, kuba eyintombazana encumile kakhulu.
MH: Ngaba unayo nayiphi na inkxaso evela kumaziko oluntu okanye kumbutho?
UBhelen: Andixhasi kwanto, ekuphela kwento yokuba ukusukela ekuzalweni kwakhe iya kukhathalelo lwakwangoko kodwa kufuneka siyihlawule, kungenjalo akukho nto.
Ngoku ndiye ndacela uvavanyo lokuqala lwenqanaba lokukhubazeka kuyo yonke into onayo, kodwa ndixelelwe ukuba kuthatha iinyanga ezili-9 ukukubona okokuqala, ke khawufane ucinge ...
Ndibulela esidlangalaleni iqela likaMalasmadres kuFacebook, ndiziva ndixhaswa kakhulu kweli qela, kuba ngamaxesha anje ngekhe uyeke into onayo ngaphakathi kwaye babe luncedo olukhulu. Ndingene kuba isayikholoji yam icebisile kwaye ndihleli.
Ifoto yekhava yeqela elikhankanyiweyo
MH: Namhlanje, ungathanda ukubona kwenzeka ntoni kuSusi ukusukela ngoku?
UBhelen: Ndingathanda ukuba aqhubeke kancinci kancinci kwaye akwazi ukubuyela ekubeni yintombazana evuyayo, eyonwabileyo nothando awayehlala eyiyo, ngoku akathandeki.
MH: Ucinga ukuba injani kwiminyaka emi-5?
UBhelen:Iminyaka emi-5 ukusukela ngoku ... kungcono ndingacingi, ndihlala yonke imihla umzuzwana ngokungathi ngowokugqibela, ngekhe wazi ukuba kwenzeka ntoni ngexeshana, ubomi abunabulungisa kwaye bufutshane. Kwaye njengoko uTamara Gorro esitsho: Umlo, ukomelela kunye nokuzingisa, igama lokuzinikezela alingeni kwisichazi-magama sethu.
Enkosi kakhulu Belén, ngokulwa njengentshatsheli yabantwana bakho, ngokuzama ukuba akukho namnye kubo oswele nantoni na, ndininqwenelela lonke ithamsanqa emhlabeni, ukuba iphupha lakho lizalisekiswe kwaye uSusi akulethele uvuyo oluhlala luhleli ekhaya.
Umama omncinci kakhulu kunye nomnqamlezo onzima owele ebomini bakhe oya kuthi ngokuqinisekileyo umomeleze.
Awuwedwa eBhetelehem. Ukwanga okukhulu.