Little Jiao's Story

8/8/2019 Little Jiao's Story

http://slidepdf.com/reader/full/little-jiaos-story 1/13

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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.

Little Jiao's Story

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