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TheLittleRedScarfExperience:LittleJiao’sStory
ThefollowingisacompletecompilationofwhatIwroteabout
theexperienceofLittleJiaoasabeneficiaryoftheLittleRedScarf.WitnessingLittleJiao’sexperiencefrombeginningtoend
wasoneofthehighlightsofmytimeinLanzhou,andIcould
nothelpbutadmirethestrengthofthislittlegirlandherfamily
astheywentthroughthistimetogether.Ihopethatthis
informsyoualittlebitmoreaboutwhatgoesonhereatthe
LittleRedScarf.–SeananFong,Fall2010StudentIntern
PartI:HomeVisittoLittleJiaoOctober5,2010
MeetingattheBusStop
OnthebusonthewaybacktoQing'anfromGaQiang's
village,wecallLittleJiao'sfamilytoletthemknowwe're
coming.Wespend40minutesonthebusbacktoQing'an,
thetown‐city.Interestinglyonthebustheyhavefoldable
stoolstostuffmorepeopleupfront.
Ifallasleep,andwhenIwakeupwearebackinQing'anatthebusstop.WemeetLittleJiao'sfamilythere:onewoman
(nottooold,maybeinherlate20's)withtwochildren,one
boyandoneyoungergirl.I'mnotsureatthistimewhichone
isLittleJiao.
Fromthebuswecrossabridgetotheoutskirtsofthetown‐
citytoalessdeveloped,dirtier,grimierarea.Thelittleboy
fearlesslyleadstheway,andthegirlkeepslookingatme,
curiously,questioningly,herbrowfurrowinginthecutest
way.Sherunsalongtocatchupwithherbrother.
MeetingLittleJiao
Wearriveatthehouse,againacourtyardformatbutthis
timeamidstsmallwindingalleysinanoutskirt
neighborhood.Wemeetthedadthere,andthemotherasks
usifwewanttea.
ThemothertalkstoYunyun,takingoutatattered
ultrasoundreportthatlookslikeithasbeenfoldedand
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unfoldedtoomanytimes.IfindoutthatLittleJiaoisthe
younggirl,thelittlesister.Theultrasound,hermothersays,
isfromwhenshewas1yearold.
Nowsheis3yearsoldand,apparently,34jin.Shehasaloveableconfusedface,andwhenshenoticesthatIam
watchinghersheslidesbehindhermother,outofmysight.
Herfingernailsarepaintedbrightred.Ashermothertalksto
us,sheplayshappilywithherolderbrother‐‐sippingwater,
andlickingandplayingwithstacksofthinplasticcups.It's
amazinghowmuchpleasureshegetsoutofplayingwitha
usedplasticbag.
Accordingtohermother,LittleJiaowasthreemonthsold
whentheydiscoveredshehadcongenitalheartdisease.She
getsabadcoldaboutthreetimesayear,inwhichcasethey
gotothetown‐cityhospital.Onetime,shestayedinthe
hospitalformorethan10days(thismight'vebeenthetime
shegottheultrasound.)
Ilistentoheartbyputtingmyheadtoherchest.It'snottoo
offfrommyhearing,butitsoundslikeithasaslightly
harderbeat.Herpulseis96bpm.
LittleJiao'sFamilySituation
Thehouseholdhassixpeoplelivingtogether‐‐thefather's
grandparents,thefather,themother,andthetwokids.
They'velivedinthishomeforgenerations.
Thegrandparentsareawaytodaytovisittheirdaughter's
house‐‐herhusbandjustgotgallbladdersurgery.
Unfortunately,thegrandparents,too,havehealthissues.
Whenthegrandfatherwas28yearsold,hehadstomach
cancer,andhestillhastorestricthisdiettohalfabowlof
rice.Hisdailymedicineamountstoabout2000yuanper
year.Thegrandmotherisold,soshecan'twork.
Unfortunately,themotheralsohadFuKebing,andjust
recentlyhadtogetsurgery.Shewasjustrecoveringand
couldn'tstandupforawhile.Sheshowsusherhand,still
blueandbruisedfromtheIVduringherhospitalstay.
Theolderbrotheris5yearsold,fullofenergyand
enthusiasm,butpolite.Heisplayingwithhissister,showing
herhowtoplaywiththefascinatingstackofplasticcups.
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Thefamilylivesinthetown‐city,buttheylikeallpeasants
havelandinthecountryside.Sincethefathergotmarried,
however,theyhavenotfarmedtheir1.8muofland‐‐it'snot
enoughtosustainthefamily,anditliesonahillabout40minutesawaybybus.Instead,theirfamilyincomecomes
fromthefather'sproductionof"liangpi",asortofnoodle‐
likefoodpopularinthenorthmadefrom___.Hemakes
about8000yuanperyear.
LittleJiao'sBurnScars
ThemotherliftsupLittleJiao'slong‐sleevedshorttoreveal
stretchesofgleamingscarsonherhandandstomach.When
LittleJiaowasyounger,shegotbadlyburntinanaccidentby
boilingwater.
TheHouse
Yunyunfinishesfillingouttheformswiththemother,and
askstotakepicturesofthehouse.Moststrikingisthegrimy
workshopinthecourtyardwherethefathermakesliangpi.
It'srun‐downanddirty,butit'sthesourceofthefamily's
income.
Weglanceintothekitchen‐‐dirty,small,andwithlittleventilation.IhadwatchedYunyuncookinherownfamily's
kitchenafewdaysago,andevenwithamuchhigherroof
andafantodriveoutthesmoke,myeyesstillstungwiththe
oilyvaporsfromthestove.Ican'timaginehowdifficultit
mustbetocookinthistiny,low‐roofedkitchen.Originally
theceilingwastaller,apparently,buttheputupthislow
ceilingtomakestoragespaceinthetop.
Thelivingroomissmallbutnewer‐looking,furnishedwitha
whitefloor,acouch,andevenatelevision.
Asweleave,Iaskthefamilyhowtheygettheirwater.Here
thewater,Ifindout,comesfromahosesuppliedbythecity
company.Butjustincasethewaterstops,theystorea
bunchinaholeintheground,awatercellar.Itlookslikeit's
growingalgaealongtherim,butitapparentlyissafeto
drink.
Themotherguidesusbacktothenarrowalleywaysthat
mazearoundthisneighborhood.Afterwesayourgoodbyes,
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YunyuntellsmeitlookslikeLittleJiao'sdiseaseisluckily
nottoosevere.Shealsocriticizesmefornotbeingpolite
enoughwhenaskingquestionstothewifeaboutthehistory
ofthehusband'sfamily'sland‐‐itmighthavemadeher
uncomfortablebecauseshemightnothavebeentooknowledgeableaboutit.
PartII:AttheHospital
LittleJiaoArrives
10/11/10
…Onthebrighterside,anewpatient,LittleJiao,hasarrived
atthehospital.Herconditionisnotascomplex,anditlooks
likeshecanhavesurgerysoon.…Ilookforwardtoseeingallthreeofthemtomorrow.
Welcome,LittleJiao
10/12/10
ItwasgreattoseeLittleJiaoandGaQiangbothmakeitto
thehospitalsopromptly.…Iwassohappythatthey
recognizedme.
LittleJiao,likewhenwevisitedherhome,wasextremely
shy.Ididn'thearhersayawordtheentiretime.Shekepthidingfromme,butIsneakilyshotafewphotosofaher
withouthiding.Shehasthemostadorableexpressionwhen
she'salittlebitconfusedaboutthings.WhenYoyoJietried
toaskherwhatherfavoritecoloris,hermotherreplied,
"Shedoesn'tunderstand."
Shearrivedthedaybeforeyesterday,andhersurgeryis
alreadyscheduledfortomorrow.Shehasarelativelysimple
ventricularseptaldefect,andaccordingtothedoctor,the
prognosisisgoodforhertypeofsurgery.
Unfortunately,soonafterwearrivedthenursecamewitha
needleforinjections.LittleJiaostartedcryingandscreaming
outofsheerterroroftheneedle.Ithinkpartofthereason
shewassodisturbedwasthattherewesomanynewpeople
inthisstrangeenvironment.Sowequietlylefttheroom.
PartIII:TheSurgery10/13/10
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WaitingforSurgery
It'searlyinthemorning,butLittleJiaoandherfamilyare
alreadyawake.Hermomlooksanxious‐‐LittleJiao'ssurgeryisthismorning.LittleJiaorestscomfortablyinher
father'sarms,allbundledupinherblanketwithonlyher
headpokingout.Shelooksatmewiththatcuriousyet
friendlylookofhers.Shedoesn'tseematallnervous.
BeforeIknowititistimeforLittleJiaotogodowntothe
surgeryroom.Thenursesliftherontoastretcheroutside
thehospitalroom.LittleJiaodoesn'tresistatall.Whenwe
makeeyecontact,shelooksatmewithcompletecalm.The
nurseswaitforacallfromthesurgeryroom.Allaround,the
familiesoftheotherpatientscometolookandwatch.Her
motherandfatherlookanxiouslyon.
Finallythecallcomes,andthenursespushthebedtothe
serviceelevatordownthehall.Thefathergoesdownwith
LittleJiaotothesurgerywardonthesecondfloor.The
motherwaitsbytheelevator.
Meanwhile,Iamtoldbythenursestogowiththedoctorin
ordertowatchthesurgery.Theyarealljustcomingoutof
theirmorningmeeting,andsoIaskaround,whoshouldIbefollowing?FinallyIfindtherightdoctor,Dr.Kou,oneofthe
juniordoctorsandthedoctorinchargeofthepediatric
cases.I'vemethimbefore;healwaysseemedabittired,but
alwayswillingtoanswermyquestions.AfterItellhimI'm
watchingtoday'ssurgery,andthatit'salreadybeen
approvedbytheheaddoctor,hetellsmetowaitinthe
doctor'slounge.
WhenDr.Kouleavestoseeadifferentpatient,Ifollowhim.
Hegoesintoapatientroom,andinthehallwayIruninto
LittleJiao’smotheronceagain.Shedoesn’tsayaword;insteadshewalkstowhereIamandstandsbyme,leaning
againstthewall.Shedoesn'tsayanything,buttearsstart
droppingfromhereyes.HowcanIunderstandwhatsheis
goingthrough?She'sputherdaughter'slifeintothehands
ofthesestrangers,whenneverbeforehasherdaughterleft
herside.DoIhugherandsayit'llallbeallright?Istaystill
andsilent,tryingtocomfortherwithmypresence.
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DowntotheOperatingRoom
Dr.Kouleadsmedowntheservicestairstothesecondfloor,
wherewehavetoswitchourshoesforcleanslippersand
ourclothesforscrubs.Iputonasurgerymaskandcap.Wewalkthroughwhatseemstomelikeamazeofroomsand
windowsintowhichyoucanseevariousoperationsand
doctors.Finallywearriveintheroomofoursurgery.
(8:50am)
It'sagenerouslysizedroom,enteredthroughanautomatic
door.Thefloorsandwallsareallwhitecolored.Thereare
sixpeopleintheroom,preparingtheequipmentandbody
forsurgery.LittleJiaoisalreadycompletelyanesthetized
andnakedonthesurgerybed.It'salittledisturbingtosee
herthere,completelyexposedandunprotected.Acatheter
isinsertedintoherurethratocollecturine,andvarious
othertubesareattached.Idonotlookathertooclosely.
Isitinthecornerwhiletheyprepare.Mostnotableisthe
heart‐and‐lungmachine,whichthedoctorswillusetokeep
LittleJiaoaliveduringthesurgery.Herentirebody,
includingherlungs,willbeparalyzedduringthesurgery,
andherbodywilldependontheheart‐and‐lungmachineto
circulateblood.Theyalsopreparetheinstrumentsfor
surgery,andtheanesthetistsitsatherhead,monitoringvariousmachinesandadministeringdrugsintothe
bloodstream.
Aftertheydisinfectherfrontside,theycoverherbodywith
layersofsterilecloth,untilallthatcanbeseenisthecenter
ofherchest,wherethesternumis.Atthispointit'shardto
thinkofthebodyasLittleJiao.InsteadallIcanseeisachest,
inwhichthereisahearttobeobservedandfixed.
Theheadsurgeoncomesinandgetsready.Morecoversare
putonthebody.Somesortoffoamisusedtowashhands.
Thesurgerybegins.(9:20am)
FixingLittleJiao’sHeart
At9:20,I'mstillseatedinthecorneroftheroom,soIdon't
seethefirstcutbeingmade.ButIhearasmallelectricknife
go.Theyinvitemetomoveclosertothepatient,andIwatch
asthesurgeontakesanelectricsaw."Bzzzzzz!"Theypullit,
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withconsiderableforceandfasterthanIexpect,straight
downtheseptum.Justlikethat,thepatient'schestisopen.
Theyusearetractortocranktheopeningwider,separating
theleftandrightribs.Iseeapinkmembrane,beatingupanddownunderneath‐‐thisisprobablytheperitoneum,a
membraneliningtheabdominalcavity.Theystart
cauterizing(burning)vesselsonthesidesoftheribstostop
bleeding,andnotsurprisinglytheodorsmellsjustlikeburnt
meat.
Theymovemerightbehindtheheadsurgeon.Iamstanding
onasmallstoolandIgettoseerightoverhisleftshoulder.
Theydosomeproddingaround,somevacuumingofblood
withasmallsuctiontube,andthentheycutthroughthe
peritoneum.
Theystitchthesidesoftheperitoneumuptotheribssothat
itdoesn'tgetinthewayoftheheart.Thenthecrankopen
theretractoralittlemore,and...
Voila!Therewastheheart,pumpinginallitsglory!It
doesn'tlookthewaythatIimagineditfromdiagramsin
class.Insteadoftheimageofahandopeningandthen
squeezing,it'sbettertoimagineawetandshinyballoon
expandingandcontracting.Meanwhile,theheartisn'tinone
place,itseemstoslidearoundinitslittlespaceasitexpands
andcontracts.Andalso,allyoucanseefromthetopisthe
rightatriumandrightventricle.Theatriumlookslikea
twitchylittleappendagetothebigrightventricle.Idon't
thinkIsawtheleftheartatall.
Theydomorecauterizing,andmorestuffthatIdonotreally
understandatthetime.Isuddenlyrealize‐‐whoa!Ithink
theyjusthookedupherinferiorvenacavatotheheart‐lung
machine!ThenthereismorestuffthatIdonotunderstand‐‐
tubes,sutures,thickerstringstotightenmoretubes.ThinkingbackIthinktheywerehookingupthesuperior
venacavaandtheaortatotheheart‐lungmachine.
Thenallofasudden,theheartdeflates.It'ssosmallnow!It
lookslikeawhitesack.Theythrowiceintothecavity,and
thenputanotherclothontocoverallthecomplextubing
whiletheymoveontoworkonthedefectitself.
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Atsomepointtheymusthavemadeanincisionintheleft
ventricle,becausenowtheyarelookingintoit,lookingfor
thedefect.Theylookaround(IthinkIhearonedoctorthat
theycan'tseethedefect).Thentheyfindahole‐‐thismust
bethedefect!Theypickatitalittle,thenputasuturethroughitsposteriorside.Thentheypulloutthissmall
whitepatch,andthen,keepingthepatchatadistance,they
putasuturethroughpatchandthenthroughthemembrane
aroundthehole,thenthroughthepatchandthenthrough
themembrane,andsoonaroundtheperimeter.Finallythe
patchdescends,andthentheytightenit.(9:50am?)The
holehasbeensealed!
Theheartisstillallsmallandwrinkly.Theythrowwaterin,
thenlowertheslantofthebedsothepatient'supperbodyis
lower.Suddenlythere'salotofbloodaround.Idon'tsee
everythingquiteclearly(thesurgeon'sbackblocksmuchof
theview),butIthinkIseethemtiesomethingsclosed.Then
theytakeoffthecoverandIseeallthetubingagain.They
takeoffsomesuturesanddosomethings,andtheheart
partiallyinflatesbackup!It'sredagain.However,itlooks
liketheventricleisstillempty.Maybetheyjustinflatedthe
coronarycirculation?I'mnotquitesure.
Theythensewbackuptheincisioninrightventricle.The
heartispumpingagainnow.Theytakeoutsomethicker
strings,andthereisblood.Theycloseupmoreincisionsand
takeoutmoretubes.Ithinktheysewupsomethinginthe
rightatriumandtieituptight.(10:08am)
Theycontinuetheirascentfromtheheart,sewingup
everythingastheygo.Itturnsoutit'smucheasierandfaster
togettotheheartthantodepartfromit.Eachlayergets
stitchedbackup.Finally,theypeelofftheplasticlayerthat
theyhadputontheskinbeforethesurgery,andrightbelow
theoperationsitetheysterilizetheareaandmaketwomore
incisions.
Thentheytakeouttheheart‐lungmachinetubetothe
inferiorvenacava,andtietheopeningclosed.Theheartnow
looksalotdarkerandfullofbloodagain.
Theystartdoingsomerinsingandvacuuming.Theyusethis
bulb‐likedroppertoaddsmallamountsofwater.Thenthey
pulltubesthroughthetwoincisionstheymadebelowthe
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sternumoperationsite.Thesetwotubeswillstaythereafter
thesurgerytodraintheabdominalcavityasitheals.
Meanwhile,anoteabouttheatmosphereinthesurgery
room:It'sverylightheartedandcasual.Peoplearetalkingfreely,thoughthesurgeonandthemainassistantaremostly
prettyfocusedontheoperationitself.
Theytakeoutthetubeforthesuperiorvenacavaandtiethe
openingclosed.Theheartforsomereasonisbeatingvery
fastnowat155.TheythentakeoutwhatIassumetobethe
heart‐lungmachinetubeintotheaortaandsimilarlytiethe
openingclosed.
Thentheytakeofftheretractor,dosomemorevacuuming,
andtakeoffthesuturesattachingtheperitoneumtothe
innersideoftheribs.Theyusingahotknifetheythenburn
thesidesofthemainopening,burningoffpiecesofstuff.I
don'tquiteknowwhattheburningwasfor(itsmellslike
burningmeatagain),butthenafterwardstheyapplyawhite
wax‐likesubstancetowheretheleftandrightsidesofthe
openingshouldcometogether.Theyputtheclampbackon,
andsewbacktogethertheperitoneum.Interestingly,they
don'tsewupthebottompartoftheperitoneumbelowthe
heart.(Maybethisisforthedrainagetubes.)
Atthispointthemainsurgeonleaves(10:30pm),andthe
stitchingisleftuptothetwomorejuniordoctors.Theyuse
thisbigmetalwiretocloseuptheribs.Atsomepointsthey
struggletogetthewirethroughtheribs.Atfirsttheyuse
onewireandstitchitthroughlikeanormalstitch.Butthen
theycutthewireatthetopsothatthetwosidescanbe
twisty‐tiedtogether.Beforetheytwisty‐tie,theydomore
burningofthesidesoftheopening,thenputclothmesh
betweenthetwosides.Thentheyplacethetwodrainage
tubesintotheperitonealcavityforgood.Finallytheytwisty‐
tieandtheribsareclosedtogetherforgood.
Afterwards,thereisbasicallyalotofsewing.Itgetsvery
relaxedastheytalkandsew.Theystartbeingveryfriendly
tomeandtrytotalktome,butIcan'treallyunderstandas
someoftheirexplanationsseemtoinvolvepretty
specializedlanguage.Therewereatleastthreelayersthat
requiredstitchingaftertheribsareclosed.Finallythe
outermostlateristiedtogetherandallyoucanseeisone
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LeavingtheHospital
10/21/10
InthemorningIgostraighttothehospitalbecauseLittle
Jiaoisgettingherstitchestakenoutandleavingthehospital
today.Ihaven'tseenherforfourdays,anditseemslikeit's
soquickthatshe'salreadyreadytoleave.Thishappensfor
allthekidsthatcomethroughthehospital‐‐Inevergetto
connectwiththemenough.I'mprettysureI'mdeveloping
attachmentissues.
Thistime,atleast,Iwillgettosaygoodbye.WhenIgetto
thecardiologyward(seventhfloor),YunyunJieistapingthe
short"thankyou"exitvideowiththefamily.I'mpleasantly
surprisedtoseeLittleJiaoallactiveagain‐‐walkingaround
andsquirmingabout.It'sonlybeenlessthanaweeksinceI
sawherchestsawedopenandstitchedbackup.Whata
blessingitistobebeyoung.LittleJiaoisalsoparticularly
resilient;shewasalreadyabletowalkaroundontheground
onthethirddayafterthesurgery,fasterthantheotherkids.
ButforsomereasonLittleJiaoisnotallthathappytoday.
Thiswholehospitalexperiencehasbeentaxingonher
emotionallyaswellasphysically.Ofcourse,sheisstillin
painfromthesurgery.Ithurtalotforthepastfewdays,butluckilyshedoesnothavetotakepainkillersanymore.
Emotionally,however,shehasdevelopedahugeterrorof
thingsinthehospital.Accordingherparents,she'safraidthe
nurses,evenafraidofthebed.Ithinkthishascrossedover
tothevolunteersaswell‐‐evenwhenYunyunJieoffersher
candy,shestartscrying.
Ofcourse,thishasbeenLittleJiao'sfirsttimeawayfrom
homeforsuchalongperiodoftime.Hermothertellsmeshe
missesherolderbrotherverymuch,andtheshemustalso
misshergrandparentstoo.Icanfeeltheireagernesstogohome.Butitmustberememberedthatthetimeandpain
herewasspenttomakeLittleJiaohealthyandstrongforthe
restofherlife.
"Comparedtomyfeelingsfromthetimewecameintothe
hospital,myfeelingsnowaresodifferent,"LittleJiao's
motherquietlyconfidestomelater(ofherownwill;Idon't
evenask.)"I'mtrulysothankful.Ifitweren'tforyou(LRS),
wereallywouldn'thavebeenabletogetthissurgerydone."
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Andit'strue‐‐thefirstfewdays,LittleJiao'smotherlooked
souptightandworried.Nowit'slikeahugeburdenhasbeen
lifted.
Astheywaittofinalizeeverythingtogo,LittleJiaobecomesalothappier,almostexcited.Thetwinklereturnstohereye
asIsmileather,tryingtogethertosmileback.Toosoonit
istimetogo.Bynow(adayalter)theymustalreadybe
home,celebratingwiththegrandparentsandtheolder
brother.Iamsohappyforthem,andthateverythingsofar
hasgonewellandsmooth.IwishLittleJiaoandherwhole
familyhealthandhappinessfortherestoftheirlongand
prosperouslives.
SideMedicalNote:
Igotachancetotakeapeekatthemedicinesthey'llbe
takingwhentheygethome:
地高辛片‐Digoxin,0.083mg,1/day
氢氯噻嗉片‐Hydrochlorothiazide,8.3mg,2/day
枸椽酸钾 冲剂‐Potassiumcitrate,1.45g,1/day
AccordingtomyWikipedia‐ing,digoxin(alsoknownas
digitalis)improvesthepumpingoftheheartbyslowing
downtheheartrateandincreasingstrokevolume.Thehydrochlorothiazideisadiureticthatreducesbloodvolume
andreducestheloadontheheart.Thepotassiumcitrateis
tocounteractthetendencyofhydrochlorothiazidetomake
thebodylosetoomuchpotassium.
LittleJiao’sQuickFacts
Nickname
小娇LittleJiao
Birthday
June16,2007
LittleRedScarfNumber
#160
ProjectPage
http://www.dongcunzu.org/project/453/
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DateofHospitalization
October10,2010
TypeofMedicalProcedure
VSD
ProjectStory
LittleJiaoisverypretty.Whenshewasthreemonthsold,it
wasdiscoveredthatshehadcongenitalheartdisease.Every
year,LittleJiaogetsseverecolds,oftenresultingin
pneumonia.Herfamilyhassixpeople:Herpaternal
grandfatherhascancer,andeverydayhereliesonmedicine
tosurvive.Hermothersuffersfromagynecologicaldisease
andherselfneedssurgery.LittleJiao'sgrandmotherisold
andcannotwork.Thefamilyonlyhas1.8mu(~.30acres)of
land,andit'salreadybeenmanyyearsthattheyhaven'thad
aharvest.Thewholefamily'slivelihoodreliessolelyonthe
father,whomakes"liangpi"(noodle‐likefoodmadefrom
greenbeans).Lastsummer,LittleJiaowasscaldedbyboiling
water.Becausethefamilywantedtosavemoneyforher
treatment,thereremainmanyscarsonherbellyandarm.