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When
Your
Baby
Wont
Eat
Ourdaughterstartedlifeonafeeding
tube.Thenwetriedtoweanheroffit
andbegantounderstandthe
complexityofhowchildrenrelatetofood.
ByVIRGINIASOLESMITH

FEB.4,2016

Violetlookedperfectlynormal,butshehadbeenslowlysuffocatingforat
leastaweek,andwehadnoidea.Violetseemedlikeanordinarynewborn:
Frombirth,shecriedwhenshewashungry,sleptwhenshewasfull.When
awake,shestaredatusintenselywhensheslept,shesleptalotone
night,forninehours.Whenthetimeshespentbreastfeedingwentfrom45
minutesto20,then10,thenfive,Ithoughtthetwoofusweregettingbetter
atit.Wewerent.Andthepurplishtingetoherlips,handsandfeetdidnt
meanshewaschilly.Violetsheartwasfailing.
Bythetimewebegantograspthis,theoxygenlevelinVioletsblood
wasonly75percentofwhatitshouldhavebeen.ShewasadmittedtoMaria
FareriChildrensHospitalinValhalla,N.Y.,andputonaventilator,the
breathingtubesnakeddownherthroatbeforeshewasfullysedated.Even
withamachinebreathingforher,Violetsoxygenplummeted.Whenshehit

20percent,acardiologistthreadedacatheterintoherheart,wherehe
inflatedatinyballoonandtugged,punchingaholethroughherinteratrial
septumtoreleaseagushofpentupoxygenatedblood.Thatwasthefirst
timewebrokeViolettosaveher.Thenextday,webegantolearnhow
severalcongenitaldefectshadmadeVioletsheartincompatiblewithlife,
andhowacardiothoracicsurgeoncouldcutapartveinsandarteriesand
sewthembacktogetherinalifesustainingpatternoverthecourseofthree
openheartoperations.Whendonesuccessfully,thisFontancirculation,as
theprocessisknown,enablesachildtoreachahealthy,ifheavily
monitored,adulthood.
Butthisisntastoryaboutheartdefects.Itsaboutsideeffects.Whenit
comestorepairingaheartnobiggerthanawalnut,thelistofthingsthat
canfallapartwhileyouresolvingthemostobviousproblemisvirtually
endless.Inourcase,thecollateraldamagewasswiftanddangerous:Violet
stoppedeating.
Atfirst,shedidnthavetheenergy.Thisiswhathadbeenhappening
duringthoseinitialshortfeedsVioletwastoooxygendeprivedtomake
aneffort.Butourdoctorsweredeterminedthatsheregainthehalfpound
lostwhileshewasdying,soshewasgivenafeedingtubealmostassoonas
shecameofftheventilator.Anurseinsertedanasogastrictubeintoher
nose,thenpusheditdownheresophagusandintoherstomach.Thattube
wasconnectedtoafeedingpumpbesideherIsolette.Thenursesrana
cocktailofformulaandbreastmilkthroughthepumpeverythreehours,
pushingasmanycaloriesaspossibleintoViolet,whethershewasawakeor
asleep.
Violetsfirstopenheartproceduretookplaceaweeklater.Weall
assumedthatbreastfeedingwouldresumeimmediately.ButViolet
continuedtotireoutsoquicklythatthedoctorsfiguredshewasburning
morecaloriestryingtoeatthanshecouldpossiblytakein.Soasecond
nasogastrictubewentin,thistimeafterverylittledeliberation.
Itsatemporarymeasure,theyassuredus.Justtillshegetsher

strengthback.Wethoughtshewouldbeeatingnormallywithintwo
weeks.
Insteadwewenthomewiththenasogastricfeedingtubestillinplace,
andeverythreehours,wecircledthroughthesamedance:FirstItriedto
gethertonurseasshekickedfrantically,turningherheadawayinfearor
fury.Nextmyhusband,Dan,offeredabottlewhileshecried,gagged,
fought.Everythreehours,wetriedbottleorbreast,allthewhiletaking
detailednotestorecordhowlongshelatchedonorhowmanymilliliters
sheswallowed.(Nevermorethanateaspoonful.)Everythreehours,we
triedthismostfundamentalactofparenthoodandfailed.Thenwe
connectedhernasogastrictubetotheblueandwhiteplasticfeedingpump
andlistenedtothemachinewhirandbeepasitfedourbaby.
Becausebabiesbeginnursinginthefirsthoursoflife,becausethe
cryofhungerisoneofourfirstcommunicationswiththeworld,itseasyto
assumethateatingisourmostprimitiveinstinct.Yetitsaninstinctthat
mustbereinforcedconstantly.Ababycries,abreastorbottleisofferedthe
babysucksuntilshefeelsbetter.Mostnewbornsdolittleelseintheirfirst
fewmonths,untiltheirabilitytoeatisfinelyhonedandthefeeding
relationshipbetweenparentandchildisthoroughlyestablished.Inthis
way,theinstincttoeatisntjustaneedforphysicalnourishmentitalso
ensuresthatbabiesformsecureattachments.Itshowtheyfallinlove.
Asababygrows,theactofeatingbecomesincreasinglyintricate.
Learningtochewsolidfoods,useaspoonanddrinkfromanopencupall
requirefinemotorskillsandconstantpractice.Yetformostbabies,the
processhappenssoseamlesslythatthislearninglooksinstinctive:The
infanthappilygumstoys,thengraduatestoslurpingdownspoonfulsof
applesauce,quicklyassociatingsuchfoodswiththesamesatiety
experiencedthroughbreastfeeding.Babiescomeintotheworld
predisposedtolearnallkindsofdifferentthings,saysLeannBirch,a
psychologistwhostudiesinfantfeedingandchildhoodobesityatthe
UniversityofGeorgia.Thereisadevelopmentaltimetableforwhenababy
canswallowfoodormovehertongueandjawsincertainways.Butwithout

therightlearningexperiences,itwontcometogether.
Itturnsoutthattheinstincttoeatissurprisinglyfragile.Onlyaround
100,000childrenintheUnitedStateshaveproblemssevereenoughto
requiretheuseofafeedingtube,accordingtoestimatesbytheFeeding
TubeAwarenessFoundation.But25to45percentofallchildrendevelop
thekindofhabitsthatpediatriciansandtherapistsseeasthehallmarksofa
problemfeeder.Theymayrefusetoeatcertainflavors,texturesoreven
entirefoodgroupsotherseattoomuch.Colic,refluxorapoorlatchcan
causeanotherwisehealthyinfanttogoonatemporaryhungerstrike.An
increasedsuspiciontowardnewfoodsisexpectedwithtoddlers.Butwhile
someparentsandpediatriciansmaypanicoverthesenormal
developmentalstages,othersmaydismissasensoryprocessingproblemor
weakoralmotorskillsasjustpickyeating.
Eitherreactioncanresultinakindofdailyinstinctoverrideforthe
finickytoddlerwhoseparentsturneverymealintoabattleoverjustone
morebite,and,conversely,forthestocky5yearoldwhoseworried
parentsbansecondhelpings.Overtime,achildcanbeconditionedby
parentalinstructionstoignoreherowninstincts,thoughnotalwayswith
thedesiredresult.Studieshavefoundthatwhenchildrenarerewardedfor
eatinghealthyfoods,theytendtolikethosefoodslessandcravesweet
treatsmore.Theresatensionhere,becauseweneedchildrentobecome
socializedtoeatatmealtimes,Birchacknowledges.Andyetparentsoften
thinktheyneedtotakemorecontrolofthisthantheyshould.
InVioletscase,theeatinginstinctwasdestroyedalmostassoonasit
emerged,bywhatsknownmedicallyasanoralaversion.Alsoreferredto
asoraldefensiveness,andmoreunnervinglyasinfantileanorexia,this
conditionresultswhenachildrefusestoeatasawayofprotectingherself
fromperceivedtrauma.Somehow,asaresultofthoseearlynursing
struggles,theemergencyintubationinthehospitalorperhapsourown
ceaselesseffortstogethertoeat,Violetforgedaconnectionbetweeneating
andpain,justasdogslearnedtosalivateatthesoundofabellinIvan
Pavlovsclassicexperimentonconditioning.Ababywithanoralaversion

canlosethosedigestivereflexesandinsteadfeelnauseatedatthesightofa
breastorbottle.Shemightnoteverfeelhungry,especiallywithafeeding
tubesupplyingallhernutrition.
Whatevercausestheinitialinterruption,theresultsseemtobethe
same:achildwhonolongerconnectstoherowninternalsenseofhunger
andsatiety,butinsteadreliesonexternalcuestodecidewhetherandhow
muchtoeat.Inthisway,successfuleatingrequiresbothourmostprimal
instinctandtherightsetoflearnedbehaviors.Wheneatinggoeswrong,
whetheritsalifethreateningaversionlikeVioletsoracommoncaseof
pickiness,parentsandmedicalprofessionalsfindthemselvesataversionof
thesamecrossroads:Doyoutrytocorrectthebehaviortrainingachild
toeatwell,Pavlovstyleordoyoutrytorediscoverthatprimalurgeand
trusthertotakeitfromthere?Itsadivisivequestionamongthedoctors
andtherapistswhoworkwithchildrenlikeViolet,aswellasadebate
unfolding,consciouslyornot,aroundmostkitchentablesinthecountry.
Bythetimeshewas2monthsold,Violetwasentirelydependenton
thefeedingtubeandnolongerdisplayedtheslightestinterestineating.
OurpediatricianconnecteduswithLynneWestgate,aspeechlanguage
pathologistatMidHudsonRegionalHospitalinPoughkeepsie,N.Y.Speech
languagepathologistsoftenworkasfeedingtherapistsbecausegoodoral
motorskillsareneededbothtospeakandtoeatsomephysicaltherapists,
occupationaltherapists,pediatriciansandpsychologistsalsoworkinthis
area.Inmostcases,afamilyschoiceisdictatedbygeographicavailability
wehadnoideawhatkindoftherapyWestgatewouldpursue.
Themostcommonapproach,usedbyalmostallthenearly30feeding
programsfoundinchildrenshospitalsandprivateclinicsaroundthe
country,isaritualisticmethodknownasonetoonereinforcement.Think
ofitasthePavlovianapproach:Itsaformofbehaviormodification,a
psychologicaltacticinwhichfoodrefusalisclassifiedasnegativebehaviors
tobesystematicallyreplacedwithpositiveones.Babiescangraspcause
andeffectveryearly,saysAmyKathrynDrayton,aleadingbehaviorist
whodirectsthefeedingprogramattheUniversityofMichigansC.S.Mott

ChildrensHospital.Iveseenchildrenwholearnedtovomitatthesightof
thebottle,andan8montholdwhocouldfakecoughbecauseheknewthat
wouldmakethefeedingstop.
Inlate2014,IsatinanobservationroomattheChildrensHospitalof
PhiladelphiasPediatricFeedingandSwallowingCenterwithColleen
Lukens,oneoftheprogramsbehavioralpsychologists.Lukenswatched
throughatwowaymirrorasIvy,a2yearoldrecoveringfromastroke,was
spoonfedherlunchbyaclinicalfeedingspecialistnamedJulieQuenzer.A
binoftoyssatattheirfeetwheneverIvyswallowedsomepuredbroccoli,
Quenzerpulledoutafiretruckandthrustitather:Goodjob,Ivy!Wayto
swallowyourbite!Thenshetookthetoybackandofferedmorefood.
WhenIvyspitoutabite,Quenzerscoopeditupandreplacedit.Youvegot
tokeepitin,Ivy!WhenIvyspititoutoncemore,theprocessrepeated
itself.Ivyswallowedonthefifthtry,andthetoyreappeared.Goodjob,
Ivy!
Thebehavioralmodelpresumesthatchildrenwhodonteatneed
externalmotivations.DraytonandLukensdontdenytheexistenceof
internalcuesabouthungerandfullness,buttheysaythatmanyofthese
childrenarenolongerrespondingtothem.Theearlytubefeeding
experienceoftendisruptsallofthat,Draytonsays.Everyinchoftheir
beingsaysstopeating,stopeating,stopeating.Ifweletthesechildren
makealloftheirownchoices,theywouldmakebadchoices.Thatswhywe
dontlet2yearoldsgettheirownapartments.
WhenIvyleftthehospitalafterfourweeks,shewaseating3.5ounces
ofpuredfoodanddrinkingfourouncesofmilkthreetimesdaily.Nearly
allthechildrenwhocomethroughtheprogramachievetheirfeedinggoals
bythemonthsend,butthehospitaldoesnottracklongtermoutcomes.
Familiesoftenstruggletomaintaintherigidfeedingroutineathome
Lukensadmittedthattheirprotocolisverytedious.Yetbehavioral
interventionremainstheonlytreatmentwithwelldocumentedempirical
supportforpediatricfeedingdisorders,accordingtoanevidencereviewof
48singlecaseresearchstudiesspanning40years,publishedin2010in

ClinicalChildandFamilyPsychologyReview.
Westgatedrawsonthebehavioralmodel,butwhetherbytrainingorby
personality,sheismuchmorelaidback.Sheshowedushowtotapon
Violetscheekswithourfingersorasmallteethingtoyandthenmakeour
wayovertoherlips,encouraginghertogumonthetoyaslongasshecould
tolerateit.SometimesthegamelastedonlysecondsbeforeVioletbeganto
cryandgag.Whenevershedid,westoppedtheideaofreplacingbites,
evenwhenthebitewasatoy,didntsitrightwithanyofus.Ourgoalisto
giveVioletpositiveassociationswithhermouth,Westgatetoldus.
ButrealprogresswasimpossiblebecauseVioletsnasogastricfeeding
tubewasworseningheraversion.EveryotherFriday,Ipinnedherdown
andsangYouAreMySunshinewhileDanthreadedanewtubedownto
herstomach.WhenVioletscreamedsohardthatherthroatclosed,we
wouldwaituntilshebreathedagain.Whenshechokedandsputtereduntil
thetubecameoutofhermouth,wewouldstartallover,hopingthatDan
didnttwistitintoherlungbymistake.Eventrainedhospitalnurses
misplacefeedingtubesasmanyas8,000timesperyear,theAmerican
SocietyforParentalandEnteralNutritionestimates,causingserious
complicationsorevendeath.Nobodytrackshowfrequentlyparentsmake
thismistake.TheonlywayDancouldsteelhimselftokeepgoingwasto
pretendinthosemomentsthatVioletwasnthisdaughteratall.
IgaveuponbreastfeedingbeforeVioletwas3monthsold,soonafter
shebeganvomitingupeverymeal,anothercommonsideeffectofnasogas

tricfeeding.Twomonthslater,Westgatesuggestedgentlythatweputthe
bottleawayaswell.Then,beforeVioletwashalfayearold,asurgeoncuta
holeinthesideofherabdomenandimplantedapermanentgastricfeeding
tubedirectlyintoherstomachwall.Thiswouldbeeasiertolivewith:
nothingtapedtoherface,nomoretorturoustubereplacements,justa
smallplasticbuttonnexttoherbellybutton.Westgateknewitwasourbest
shotathealingtheaversion,butIcouldntseeitasanythingotherthan
failure.WecouldnowplugVioletinforfoodasifwewerechargingan
iPhone.Itwasdevastating.Andalsoarelief.

Aroundthistime,Idiscoveredagroupofthera
pistswhooffernot
onlyamoremoderatetakeonthebehavioralmodelbutalsoprogramsthat
rejectitoutright.Thesetherapistsbelievethatallchildrenhavesome
internalmotivationtoeat,aswellasaninnateabilitytoeffectivelyself
regulatetheirintake.Thisisascientificconversation,butitsalsoadeeply
philosophicalone,saidSuzanneEvansMorris,aspeechlanguage
pathologistandfounderoftheNewVisionseducationandtherapyprogram
inFaber,Va.,whenIcalledhertodiscussVioletscase.Doesanaversion
oracomplicatedmedicalhistoryeraseachildsinternalmotivationtoeat?
Orcanwehelpthemrediscoverit?Ibelievethereisatremendousamount
ofwisdomintheselittlekidsandthattheywilltransitiontoeatingintheir
owntimeifwegivethemtherightsupport.
Morrisisakindofguruinthespeechpathologyworldalongwiththe
pediatricoccupationaltherapistMarshaDunnKlein,shewrotePre
FeedingSkills:AComprehensiveResourceforMealtimeDevelopment,the
798pagebibleofspeechlanguagepathologists.Shealsohelpedwritethe
professionsstandardskillschecklist,whichWestgateusedtofirstevaluate
Violetsoralaversion,andpioneeredachildcenteredapproachtofeeding
therapy,trainingparentstoreadtheirchildscuesandofferfoodonlywhen
clearlyinvitedtodoso.Toencouragechildrentoissuesuchinvitations,
Morristurnsfoodintoplay,racingcrackersbalancedontopofachildstoy
cars.
Disciplesofthischildcenteredapproachteachthedivisionof
responsibility,aconceptdevelopedinthe1980sbyEllynSatter,a
registereddietitianandfamilytherapist.Althoughmedicalprofessionals
havelongviewedoverandundereatingasseparateissues,theformer
rootedinalackofwillpowerandthelatterinaselfdestructiveneedfor
control,Satterseesthemasrelated.Inbothcases,thesekidsarereacting
todistortionsintheirfeedingrelationshipwiththeircaregivers,shetold
me.Torestorebalance,Sattersays,aparentneedonlytakeresponsibility
fordecidingwhatkindsoffoodtoofferand,aschildrenreachtheendof
theirfirstyear,whenandwheremealstakeplace.Sheleaveschildrenin
chargeofhowmuchandevenwhethertheyeat.Satterbelievesthe

preservationofthatabilitytoselfregulateisatthecruxofsolvingboth
childhoodobesityandpediatricfeedingdisorders.
SatterandMorrishavepublishednumerousbooksandcasestudiesbut
arestilldevelopingawaytotesttheirmethodsincontrolledclinicaltrials.
Theirlackofpublishedempiricalstudiesraisesquestionswithbehaviorists.
Ithinkmostofthechildrenweworkwithhavealreadytriedachildled
approach,anditsfailed,Lukenssays.ButMorrislistedmanyclientswho
weredissatisfiedwiththebehavioralapproachaswell.AndImetseveral
formallytrainedbehavioraltherapistswhohadcrossedovertothechild
centeredmodel.
Irealizedthatteachingachildtoeatwhentheirbodyistellingthem
nottoisnotonlycounterproductive,itsdangerous,saysJenniferBerry,
anoccupationaltherapistandfounderoftheSpectrumPediatricsTube
WeaningProgram,basedinAlexandria,Va.Sheresiststhetermaversion
altogetherbecauseitimpliesadysfunctionalbehavior.Itsnotaproblem,
shetoldme,itsanadaptiveskilltoknowwheneatingisntsafe.
Studiessuggestthatchildrenmayeatlesshealthfullywhenparents
exerttoomuchcontrolovertheprocess.Forexample,ina2006trial
publishedinthejournalAppetite,childreninstructedtofinishtheirsoup
compliedbegrudginglybutstillatelessthanchildrenwhowere
unpressured.Researchoneatingdisorderpatientsalsosuggeststhathighly
pressuredmealtimesearlyinlifemightplayakeyroleinthedevelopment
ofthoseconditions.
Butthebehavioralmethodgetstubedependentchildrentoeatwhen
thestakesarethathigh,worryingaboutemotionalconsequencesmayfeel
likeanafterthought.Thequestionofwhenchildrenstarttoenjoyfoodfor
itsownsakeremainsamysterytoallofusinthefeedingworld,Lukens
says.NeveroncedoIsaytoaparent,Bytheendofthefourweeks,Ithink
shelllovefood.
ButIyearnedforViolettolovefood.Eventhoughwehadswitchedtoa
permanentfeedingtube,Iwantedtobelievewecouldunlockherinternal

motivationtoeat.Still,wheneverDanandIdiscussedtheidea,wegot
stuck.Howcanyoutrustachildtoeatenoughaftershehasshownyouthat
sheiswillingtochoosestarvationevenifthatwaswhatMorrisandBerry
wouldcallagoodchoiceatthetime?Forthatmatter,givenhowbadlyI
misreadhercuesinthosefirsttwomonths,howcouldItrustmyselfto
understandthechoicesshewasmakingnow?
InPalatine,Ill.,Joeygiggledashepaintedchocolatepuddingontoa
glassslidingdoorwithHeidiLieferMoreland,aspeechlanguage
pathologistwithSpectrumPediatrics.WewereinaChicagoarearental
apartmentthattheteamwasusingforJoeysfeedingtubewean,asthe
transitiontonormaleatingisknown.Kidsshouldntlearntoeatina
clinic,Berrytoldme.Theyshouldlearntoeatatthefamilytable,sothats
wherewework.OrinthecaseofJoey,whowas2andhaddepended
entirelyonhisfeedingtubeeversincehisprematurebirth,thatsnear
wheretheyworked.TherewasnothingthatresembledforcefeedingI
neversaweithertherapistholdaspoon.Mostly,theyweretheretohangout
withJoeyandhisfamilywhileeverybodywaitedforhimtorealizehe
hadntbeentubefedmorethanafewouncesinalmostaweekandthat
eatingwouldbetheonlywaytoerasehisnagginghunger.
ThisiswhereBerrysapproachsplitsofffromthetraditionalchildled
modelandbecomesradical.Caloriesfromthefeedingtubearecut
significantlyoverafivedayperiod,soatubefedinfantorchildbeginsthe
weanonaround50percentofhisnormaldailycaloricintakeand80
percentofhisoptimalfluidneeds.Overa10dayperiod,Berryand
Morelandareoncallaroundtheclock,givingsupportandcoachingasthe
child,theysay,rediscoversthedrivetoeat.Aftertheinitialwean,therapy
continuesasneededforsixmonthsbythen,95percentofBerryspatients,
shesays,areeatingalloftheirdailycaloriesbymouth,althoughher
findingshaveyettobereplicatedorpublishedinanAmericanscientific
journal.
Manybehavioralprogramsalsoincorporateamodifiedversionofthis
appetitemanipulationIvystubefeedsweregraduallyreducedby60

percentoverthecourseofhermonthattheChildrensHospitalof
Philadelphia,andLukenscreditedherhungerforthesuccess.Butonlya
fewmainstreamprograms(includingoneatSeattleChildrensHospital)
haveadoptedachildcentered,hungerbasedapproachtotubeweaning.
Mostconsiderittooriskybecauseofthepotentialforweightloss.Berrys
programrequiresadoctortosetsafetyparametersforeachchildandto
signoffontheamountofweightlossthatcanbetolerated.
Laterthatnight,Joeysatlistlesslyonthecouchwithhismother,
AngelaReid.AbagofTerraChipsandanElmosippycuplayonthecoffee
tableinfrontofthem,andeverysooften,Joeywouldpickuponeorthe
otherandmoan.
Isthisnormal?ReidaskedBerry.Hesneverlikethis.Whatsgoing
on?
Berrysatagainstthefarwall,assessingthesituation.Ithinkhesvery,
veryhungry,shesaid.Wehavetodecidewhetherhesgoingtofindthis
motivating,ordoesheneedalittlesupport?Afterabriefdiscussion,Reid
fedJoey30millilitersofPedialytethroughhisgastrictube.Within
minutes,hebouncedup,allsmiles:Elmo!Bythetimeweleft,hehad
nibbledthreechips.
Usuallythatsjustenoughtotaketheedgeoffthathorriblenew
feelingofhunger,Berryexplainedtomelater.IaskedherhowJoeys
palpablefrustrationwasanydifferentfromIvysslackjawedcompliance
withherfeeder.Becausewerefollowinghiscues,shesaid.Wedidntlet
himsuffer.Butwedidntforcehimtoeatbeforehewasreadyeither.The
nextday,Joeyatemorethan20chips.Afewdayslater,hediscovereda
loveoffriedchicken.Thefamilywenthomeadayearlyoverthenext
month,theyusedhisfeedingtubeforoccasionalsupplementation,butJoey
continuedtoeatwellandgainedfourounces.
WeofferedVioletherfirstbiteofbananawhenshewas5months
old,aboutaweekafterherpermanentfeedingtubewentin.Shesaton
Danslapatbreakfastandseemedfascinatedasshewatcheduseat.Iheld

mybreathasIofferedthespoonful:Whywouldthistimebeanydifferent?
ButViolettookataste.Solidfoodsintriguedher.Theydidnttriggerher
aversioninquitethesameway.
WebegantoputVioletinherhighchaireverytimewesatdowntoa
meal,tryingtocatchonquicklytotheslightshakeofaheadthatmeant
nobeforeitescalatedtogaggingandcrying.Wedidntalwayssucceed.At
times,weofferedbooksortoystorewardViolet,oratleastmaintainher
interest.Shedidnteatmuchofanything,andthefoodthatdidpassherlips
wasgaggedonorspitout.Still,itfeltclosetonormal,likehowourfriends
satatthetablewiththeirbabies.
ThenVioletunderwenthersecondopenheartoperation.Overthenext
threemonths,wespent50daysinthehospitalasshefoughtoffvarious
complications.Eatingwasforgotten.Butoneday,Violettookapreviously
rejectedsippycupanddrankanounceofwater.Shewashookedupto
oxygentokeepherbreathingstable,andthenursestoldusthatbreathing
onanasalcannulafeelsnotunlikedrivingdownahighwaywithyourhead
outthewindow.SoVioletwasthirstyfortheveryfirsttimeandsomehow
sheknewthatshecouldusehermouthtomakeherselffeelbetter.Wenow
hadabitofproofthatherinternaldrivewasstillinthere,somewhere.
AfterVioletrecovered,wewenthomeandspentthesummerwatching
foranysignthatshewasreadytotryeatingforreal.Webeganworking
withapediatricdietitiannamedMargaretRuzzi,whoinstructedustooffer
tablefoodsbeforeeverytubefeed.Byherfirstbirthday,Violetwastakinga
fewbitesoffoodateverymeal.Shelovedflavorchickentikkamasala,
padthai,blueberries.Oneafternoon,sittingonmylap,shehappily
gummedanapplecore,andIknew:Foodonceagainmeantcomfort.The
aversionwasgone.
ButVioletstillreceivedallhercaloriesthroughherfeedingtube.
Becauseshenevergothungry,eatingwasonlyrecreational.Sometimesit
feltasifshewerebaitingusshewouldpackspoonfulsintohercheeksand
thenjustaswethoughtherewastrueeating,atlast!spititallout.

WhenIdescribedtheconstantspitting,MorrissuggestedIreframeitasa
criticalpartofVioletslearningcurve.SpittinghelpsVioletknowshecan
getthefoodout,Morrisexplained.Thatmakesitsafetoexperimentwith
takinganotherbite.SoweletVioletspit.Andstartedtothinkaboutwhat
mighthappenifwestarvedheralittle.
Itfeltcounterintuitiveandmaybeevenselfindulgent.Iwonderedifwe
werepushingtoohardbecausethefeedingtubewithitsformulato
blend,syringestoclean,equipmentsuretomalfunctionat1a.m.was
drivingusinsane.ButVioletwasnteatingbecauseshedidntknowshe
neededtoeat.AndsowithRuzziandWestgatessupport,wedecidedto
drophertubecaloriesby20percentfortwoweeks.
Ourplanwastostartbycuttingoutamorningsnacktubemeal,
whichVioletnormallyreceivedat9oclockinstead,shewouldhavesix
hoursbetweenbreakfastandlunchtoexperiencehungerforthefirsttime
inoverayear.Inthefirsttwoweeks,notmuchhappened.Violetcried
more,particularlyaround11a.m.,whenpresumablyherstomachfelt
empty,butshehadnoideawhattodoaboutit.Weheldheralot.Shedidnt
eatmore.AtournextcheckupwithRuzzi,shehadlost10ouncesbutalso
grownaninch.Letskeepgoing,Ruzzisaid.
Sowecutbackhertubefeedingsby40percent,andoverthenexttwo
weeks,Violetbegantoeat.Atinywheelofcheese.Apouchofapplesauce.
Atournextcheckin,shehadgainedfiveounces.Wecutbackmoreonthe
tubecalories.ByNovember,weestimatedthatVioletwaseatingbetween
150and200caloriesbymouthperday.InDecember,sheateherfinaltube
meal.
Notlongbeforethat,wewenttoadinerforbrunch.Itwasthefirst
timeinoverayearthatwewentanywherewithoutpackingthepump,
syringesandtube.Weorderedeggsandwichesand,fromthekidsmenu,a
grilledcheese,whichDancarefullycutupintopostagestampsizebites.All
aroundus,otherfamiliesweretuckingintotheirSundaypancakes,chatting
andclinkingforks.Violetscribbledwithcrayonsonherplacemat,threw

myFrenchfriesonthefloor,giggledatherdadsfunnyfaces.Andthenshe
ateeverythingbutthecrusts.

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