IMPROVING INTERSTAGE GROWTH IN
SINGLE VENTRICLE HEART DEFECTS
Kristi Fogg MS, RD, LD, CNSC
Pediatric Cardiology Dietitian
Sodexo/MUSC Children’s Hospital
OBJECTIVES
Understand factors contributing to growth failure in
infants with Hypoplastic Left Heart Syndrome (HLHS)
 Discuss the National Pediatric Cardiology Quality
Improvement Collaboration (NPC QIC)
 Identifying the role of the dietitian as a member of the
care team
 Review the components of MUSC’s Interstage Growth
Monitoring Pilot Program
 Show the role of technology in improving
communication with parents and care teams

ANATOMY OF THE SINGLE VENTRICLE HEART
SURGICAL PATHWAY

Week 1-2 of life
Norwood Procedure
 Hybrid, central shunt


6-10 months


BiDirectional Glenn
3-4 years old

Fontan
GROWTH FAILURE IN HLHS
Poor prenatal growth (IUGR)
 Inability to feed preoperatively
 Slow progression of feedings post op
 Poor intestinal perfusion, NEC
 Reflux
 Oral Aversion
 Fluid Restriction
 Chromosomal abnormalities



Trisomy 21, 18; Turners syndrome, Digeorge Syndrome
Other non cardiac malformations

Cleft lip/palate, imporforate anus, gut malrotation
NATIONAL PEDIATRIC CARDIOLOGY QUALITY
IMPROVEMENT COLLABORATION
NPC-QIC
 Mission


Improve care and outcomes of infants with HLHS during the
4-6 month outpatient interstage period between surgeries
Improving interstage growth
 Reducing readmissions due to major adverse events
 Improving communication and care coordination with the family,
referring cardiologists, and primary care clinic


Includes 42 pediatric cardiology centers


Physicians, CT Surgery, NP’s, Dietitians, Speech Therapists
Parental Involvement
NPC QIC INVOLVEMENT
Learning Sessions (2x Year)
 Monthly Action Calls (MUSC presenting on 4 calls)

Working calls focused on Growth, Care transitions, discharge
planning and emerging literature
 PDSA Presentations
 Story Boards

Data Entry and Data Sharing
 Access to shared drive

LEARNING SESSION: JUNE 2012

Focus on Growth Failure






Current growth trends between institutions
Implementation of feeding protocols
Engaging your RD
Major red flag events
Growth bundles
Care transitions
DIETITIAN INVOLVEMENT

Goal: Dedicated Dietitian to Pediatric Cardiology
Department to improve growth and reduce mortality
Updated nutrition care plan
 Coordination of care w/ outlying facilities and families
 Phone availability when not physically present

93% Patients had dietitian available inpatient
 69% had dietitian available as an OP

12% routine with clinic visit
 57 % consulted as needed

CURRENT SUCCESSFUL INTERVENTIONS
MUSC QI IN INTERSTAGE GROWTH
INTRODUCTION OF GROWTH BUNDLE
Established Feeding Protocol
 After Hours TPN
 Establishing Interdisciplinary team

Addition of pharmacist and dietitan
 Participation in rounding, care coordination, QI


Non statistical significant improvement
LACTOENGINEERING

Hindmilk
5 minute separation of foremilk
 Evaluation of composite milk and hindmilk
 Ranging 25-33 cal/oz
 Eliminates need for fortification


Skim Breastmilk
For patients with chylous effusions
 Requires supplementation with MCT based formula, ADEK
MVI

INTERSTAGE MONITORING
In the interstage, this is an extremely vulnerable time
with a significant incidence of growth impairment, rehospitilization, myocardial dysfunction and death
 Implement an interstage growth surveillance program
that performs outpatient growth, feeding, and nutrition
monitoring between Norwood and Glenn surgery.
 Develop and promote an interprofessional collaboration
to reduce interstage growth failure

INTERSTAGE MONITORING PROGRAM

IP Grant ($15,000)
Fosters an environment that rewards innovative and
integrated education, research and patient care.
 Scales, Pulse ox monitors, educational binders, Learning
sessions for NPC, Peapod maintenance


Why is MUSC unique?
NO ONE is excluded
 Technology
 Interaction with outlying facilities
 Funding

INCLUSION CRITERIA
Neonates requiring surgical shunt placement, PA
banding, Norwood procedure, or hybrid procedure for
single ventricle anatomy
 Once transferred to the stepdown unit, parents are
consented and education is initiated


Discharge Teaching Started






Discharge Educational Binder
Use of Pulse Ox, Infant Scale
Formula Preparation
Red Flag Action Plan
Use of Google Voice Correspondence
Peapod Measurement
PEAPOD MEASUREMENT

Body Mass Measurement


Measured oxygen consumption, CO2 expelled, BSA
Infants and Body Mass
Long term correlation with chronic disease
 Possible use in anesthesia
 Leaner babies have higher BMR
 Correlation in Cardiac Babies?

PEAPOD MEASUREMENT
WEIGHT MONITORING AND SAT MONITORING
Decrease interstage mortality
 Earlier feeding interventions
 Triaging red flag action plans
 Improved detection of important residual/recurrent
lesions and improved survival
 Avoiding unnecessary ER visits
 Earlier operative intervention

RED ACTION PLAN
O2
Saturations
≥ 90%
≥ 70% and < 90%
Continue
current therapy
NO
- Respiratory distress?
- Decreasing PO intake
or increasing fatigue?
- Changes in skin color
or perfusion?
- Poor weight gain?
< 70%
YES
-Medical evaluation
Inadequate
Weight Gain
Less than 20 gram
weight gain over
3 days
30 gram weight
loss in 24 hours
Has achieved goal
calories of 110-150
cal/kg/day
Signs of acute
illness present
YES
- Is formula
preparation correct?
- Are weights being
properly performed?
NO
- Signs of aspiration?
- Respiratory distress?
- Weak cry?
- Emesis?
- Diarrhea?
- Bloody stools?
- Decreasing PO intake
or increasing fatigue?
- Changes in skin color
or perfusion?
NO
YES
- Review feeding
regimen
- Review formula
recipe/mixing
- Daily weight
reporting until
consistent weight
gain x 3 days
NO
NO
- Increase volume of
feedings OR increase
caloric density
- Daily weight reporting
until consistent weight
gain x 3 days
YES
YES
- Medical evaluation
- Possible inpatient
admission
USE OF TECHNOLOGY
Parents communicate daily using google voice
 Text/Call to adjust feedings or address red action plan
 Data entered into shared drive
 Weekly Rounding
 BiMonthly progress report to pediatrician and
cardiologist

GOOGLE VOICE FOR PARENTAL COMMUNICATION
Free!
 Need Google account
 Assigned local number
 Texting/Voicemail
 Voicemail Transcription
 Able to re-route to
multiple phones
 Allow on call schedule

GOOGLE VOICE
date
growth x
7d
sat
weight
1-Aug
4.51
27
growth regimen
75 ml over 1hr, Alimentum 27 cal/oz. Going up 1ml at a time, every
86few days. Takes up to 55 ml at TID feeds
2-Aug
4.5
21
81
3-Aug
4.51
20
84
4-Aug
4.53
20
85
5-Aug
4.55
10
88119 cal/kg/day
6-Aug
4.59
16
85
7-Aug
4.62
18
83
8-Aug
4.67
23
81
9-Aug
10Aug
11Aug
12Aug
13Aug
4.69
27
88
4.71
29
85
4.73
29
84
4.73
26
81
90
21
@ 77 ml q 3hr, added olive oil,
81giving 130 cal/kg
88
4.74
weight
4.8
4.75
4.7
4.65
4.6
4.55
4.5
4.45
4.4
4.35
weight
1
2
3
4
5
6
7
8
9 10 11 12 13
sat
86
84
sat
82
80
78
76
1
2
3
4
5
6
7
8
9 10 11 12 13
THANK YOU! QUESTIONS????