OoGqirha be-CHOP Bohlula amawele aManyaneyo asele eKhaya ngoku

Ibhalwe ngu umhleli

Emva kwesithuba esingangonyaka kukhathalelo olunzulu kwiSibhedlele saBantwana sasePhiladelphia (CHOP), amawele aneenyanga ezili-10 ubudala ahlangeneyo u-Addison (Addy) noLilianna (Lily) Altobelli bohlulwa ngempumelelo ngoogqirha botyando be-CHOP ngo-Oktobha 13, 2021. Ngoku ikhaya eChicago, amantombazana azalwa edibene nesisu kunye nesifuba, imeko eyaziwa ngokuba ngamawele e-thoraco-omphalopagus, oku kuthetha ukuba babelane ngesibindi, i-diaphragm, isifuba kunye nodonga lwesisu.

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Iqela lotyando elibandakanya iingcaphephe ezingaphezulu kweshumi elinesibini, kuquka oogqirha botyando ngokubanzi, iingcali zokuthomalalisa iintlungu, iingcali zemitha, ugqirha wentliziyo, noogqirha botyando beplastiki, bachithe malunga neeyure ezili-10 besahlula amantombazana. Emva kokuba la mawele ahlukene, iqela elityandayo lahlulahlulwe kubini laza lakha kwakhona isifuba nodonga lwesisu sentombazana nganye, lisebenzisa umaleko womnatha nobugcisa botyando lweplastiki ukuze luzinzise usana ngalunye.

"Ukwahlula amawele adibeneyo ahlala engumceli mngeni kuba yonke isethi yamawele iyingqayizivele, kwaye bonke banemingeni eyahlukeneyo kunye neengqwalasela ze-anatomic," watsho ugqirha okhokelayo uHolly L. Hedrick, MD, ugqirha wabantwana kunye nomntwana ohambayo kwiCandelo le-Pediatric General. , Utyando lweThoracic kunye ne-Fetal kwiSibhedlele saBantwana saseFiladelphia. “Indlela iqela lethu elisebenzisana ngayo, iyamangalisa kwaye ikhethekile, abantu abaninzi bedibana ukuze basebenzele injongo enye. UAddy noLily baqhuba kakuhle, yaye sinethemba lokuba baza kuphila ubomi obumnandi.”

Ukusuka kwi-Diagnostic to Delivery

Uhambo luka-Addy noLily lwaqala xa bafunyaniswa bekhulelwe kwidinga labo le-ultrasound yeeveki ezingama-20. Ngaphambi kweso siqendu, abazali uMaggie kunye noDom Altobelli babecinga ukuba banomntwana omnye, kodwa umfanekiso we-ultrasound wabonisa ukuba uMaggie wayephethe abantwana ababini kuphela kodwa bafakwe kwisisu.

Amawele adityanisiweyo anqabile, enzeka kwi-1 kuphela kuma-50,000 okuzalwa. Esi sibini sathunyelwa kwi-CHOP ukuze sihlolwe ngakumbi, kuba isibhedlele sesinye selizwe abambalwa abanamava okwahlula amawele adibeneyo. Ngaphezu kwe-28 izibini zamawele ahlangeneyo ahlulwe kwi-CHOP ukususela ngo-1957, uninzi lwaso nasiphi na isibhedlele elizweni.

Esi sibini sadibana neengcali kwi-CHOP kaRichard D. Wood Jr. Centre for Fetal Diagnosis and Treatment, apho uMaggie wafumana uvavanyo olubanzi lwangaphambi kokubeleka ukuze abone ukuba kwakunokwenzeka na ukwahlula amawele, ngokusekelwe kuxhumo lwabo kunye nokwabelana nge-anatomy. Oogqirha bafumanisa ukuba nangona la mantombazana ayefana nesifuba nodonga lwesisu, i-diaphragm nesibindi, la mawele ayeneentliziyo ezahlukeneyo nezisempilweni. Isibindi sabo ekwabelwana ngaso sasisikhulu ngokwaneleyo ukuba sahlule phakathi kwabo, sibenza abaviwa abagqwesileyo botyando lokwahlula.

Emva kweenyanga zokucwangcisa ukunikezelwa komngcipheko ophezulu ngokusebenzisa i-C-section, ekhokelwa nguJulie S. Moldenhauer, MD, uMlawuli weeNkonzo zokuBelekisa, u-Addy noLily bazalwa ngoNovemba 18, 2020 kwiYunithi yokuhanjiswa kweNtsapho eKhethekileyo yaseGarbose (SDU), Iyunithi yokuhanjiswa kwezigulana ze-CHOP. Baye bachitha iinyanga ezine kwiYunithi yoNcedo oluNtu olusandul’ ukuzalwa/ lweNtsana (N/IICU), elandelwa ziinyanga ezintandathu kwiYunithi yoNyango lwaBantwana (PICU). Ugqirha we-CHOP weplastiki uDavid W. Low, MD, wafaka izandisi zesikhumba ukuze zolule ulusu lwamantombazana ukulungiselela utyando lokuhlukana. Njengeebhaloni ezincinane neziqengqelekayo, izandisi zolusu zanda ngokuthe ngcembe ngezitofu, zolula ulusu ngokuthe chu ekuhambeni kwexesha ukuze intombazana nganye ibe nolusu olwaneleyo lokugquma udonga lwesifuba nesisu sayo esiphandle emva kokwahlukana.

Utyando Oluntsonkothileyo

Emva kokuba amawele azinzile kwaye kukho ulusu olwaneleyo lokugubungela okwaneleyo emva kokuhlukana, babekulungele ukuhlinzwa. Kwinyanga ngaphambi kokuba kwenziwe utyando, iqela labatyandayo lalidibana veki nganye, lihlolisisa imifanekiso ye<em>ultrasound ngokuphindaphindiweyo ukuze lihlolisise indlela igazi elihamba ngayo kwizibindi zala mantombazana, ukuze libe nemephu yokuphuma kwegazi apho amantombazana awela khona. I-CHOP ye-radiologists yenze imodeli ye-3D, edityaniswe kunye njengeziqwenga ze-Lego®, ukuze iqela lotyando liqonde ubudlelwane be-anatomy ekwabelwana ngayo yamantombazana kwaye baziqhelanise notyando kwi-exercises yokuhamba, njengempahla yokuziqhelanisa ngosuku lotyando.

Ngomhla we-13 ku-Okthobha, ngo-2021, emva kweenyanga zolungiselelo, uAddy noLily baye benza utyando lweeyure ezili-10 baza bohlulwa ngokusemthethweni ngo-2:38 pm IRadiology yayikhona ngexesha lotyando ukuze imephu yezakhiwo ezibalulekileyo zesibindi nge-ultrasound. Akuba ahlukene la mantombazana, igqiza lotyando lahlulahlulwe kubini laza laqalisa umsebenzi wokuzinzisa intombazana nganye nokwakha kwakhona isifuba nodonga lwesisu sayo. UStephanie Fuller, MD, ugqirha we-cardiothoracic, wadibanisa i-patent ductus arteriosus yamantombazana kwaye waqinisekisa ukuba iintliziyo zamantombazana zombini zikwimeko efanelekileyo kwaye zisebenza kakuhle. Oogqirha botyando bePlastiki babeka izaleko ezimbini zomnatha – omnye wokwexeshana, omnye osisigxina – phezu kweendonga zesisu nesifuba samawele baze ke bayigqume loo nto ngolusu olwalusoluliwe kwiinyanga ngelixa amantombazana ekwiPICU. 

Xa amantombazana ayephumile kuqhaqho, uMaggie noDom babona iintombi zabo zahlukana okokuqala.

“Ukubabona benemizimba yabo – imizimba yabo ibigqibelele kakhulu – bekumangalisa,” utshilo uMaggie. “Yayingachazeki.”

Ikhaya leeholide

Nge-1 kaDisemba, i-2021, i-Altobellis ekugqibeleni yabhabha yagoduka ukuya eChicago - iwele elinye ngexesha, inomzali omnye emnye - emva kokuhlala ePhiladelphia isithuba esingaphezu konyaka. La mawele achithe iiveki ezimbini kwisibhedlele sabantwana iLurie phantsi kononophelo lweqela lezonyango eliza kubaxhasa kufutshane namakhaya. Amantombazana akhululwe kanye ngexesha leKrisimesi kwaye afika ekhaya afumana igceke labo lihonjiswe ngabamelwane babo. Iholide bayichithe kunye ekhaya njengentsapho yabantwana abane.

U-Addy noLily bobabini basenazo iityhubhu ze-tracheostomy kunye ne-ventilators ukubanceda ekuphefumleni, njengoko baya kufuna ixesha lokuphuhlisa izihlunu kwaye balungele ukuphefumla ngokwabo. Ekuhambeni kwexesha, baya kulunyulwa kwii-ventilators.

“Siqala incwadi entsha – ayisosahluko esitsha, yincwadi entsha,” utshilo uDom. “Siqale incwadi entsha kraca yamantombazana, kukho nencwadi kaAddy, kukho neLily.”

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Umhleli oyintloko we-eTurboNew nguLinda Hohnholz. Uzinze kwi-eTN HQ e-Honolulu, eHawaii.

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