The Power of Stories over Statistics:

Illustrations from Neonatal Jaundice

and Infant Airplane Safety

Thomas B. Newman MD, MPH

Professor of Epidemiology and Biostatistics
and Pediatrics, University of California, San
Francisco

\sabbatical\stories&StatsForExeter.ppt
 Overview

 Introduction
 Jaundice in newborns and kernicterus
 Infant safety seats on airplanes
 Stories vs Statistics; Politics and Risk
research
 Possible approaches and
recommendations
 Questions and discussion
Idealized public health decision
making
 Recognize resources are limited
 Estimate the number of people who would
benefit, and how much, from various courses
of action
 Select course of action with highest expected
benefit
 Alternative basis for decisions: stories
Jaundice --Background 1
 Bilirubin: Yellow breakdown product of heme
(from red blood cells)
 Jaundice: Yellow color of whites of eyes and
skin due to high bilirubin. Usually indicates
liver or blood disease, but generally normal in
newborns
 Hemolysis: Destruction of red blood cells
 Kernicterus: Rare, severe, permanent brain
damage from very high bilirubin levels
Jaundice --Background 2

 Phototherapy:
Shining light on the
babies skin -- helps
lower bilirubin levels
 Exchange
transfusion: replace
baby’s blood with
donor blood
Jaundice – Background 3
 Exchange transfusion for Rh disease 1950s
 much less kernicterus
 Phototherapy 1970s
 TN a resident in pediatrics 1980-83
– Phototherapy for Total Serum Bilirubin (TSB) > 14-
15 mg/dl (240 uMol/L)
– Exchange transfusion for TSB > 20 mg/dl (340
uMol/L)
– Beginning of AIDS epidemic
 Watchko and Oski’s “Vigintiphobia” article
(1983)*

*Watchko JF, Oski FA. Pediatrics 1983;71:660-63

Jaundice--Current issues
 We know jaundice used to be over-treated
 “Kinder, gentler” approach (1992) and AAP
jaundice guideline (1994) -- far less treatment
– Phototherapy for TSB >= 20 mg/dL
– Exchange for TSB > 25-30 mg/dL
 Concern about the return of kernicterus;
evidence is poor
 New diagnostic technologies
 Formation of PICK, a parents group; push for
universal bilirubin screening
Phototherapy (PT) and Exchange
Transfusion (ET) in 2 Hospitals in Israel
Pre- and Post AAP guideline*

N PT % PT ET % ET
1992-3 6499 514 7.9% 15 0.23%
1995-6 8650 251 2.9% 3 0.03%

• 63% reduction in phototherapy

• 85% reduction in exchange transfusions

*Seidman DS et al. Acta Paediatr 2001;90:292-5

 PILOT KERNICTERUS REGISTRY
Confirmed Cases of Acute Kernictrerus (Voluntary Reporting)
“Healthy” Term and Near Term Infants Born in 34 States
Number of Kernicterus Cases

30
25
20
15
10
5
0
< 1984 84-86 87-89 90-92 93-95 96-98 99-02
http://www.pickonline.org/presentation.ppt, Year of Birth
accessed 7/10/03
BIND CENTER - Pennsylvania Hospital
Concern about Return of
Kernicterus
 Brown and Johnson registry: 90 cases
in 15 years in the US
 Northern California Kaiser Permanente
– No cases in 111,000 births, 1995-8
– No cases found in 1991-4 (N~119,000)
– BUT: Evidence of increase in babies with
very high bilirubin levels 1999-2003.
Deaths from Kernicterus (773.4,
774.7), < 1 year-olds, USA*
Crude
Death Death
Year Count Population Rate/ 100K

1979 2 3,494,398 0.1 (UNRELIABLE)

1980 2 3,612,258 0.1 (UNRELIABLE)
1981 1 3,629,238 0 (UNRELIABLE)
1982 2 3,680,537 0.1 (UNRELIABLE)
1983 1 3,638,933 0 (UNRELIABLE)
1984 1 3,669,141 0 (UNRELIABLE)
1985 1 3,760,561 0 (UNRELIABLE)

*CDC Wonder, Accessed 7/10/03

Deaths from Kernicterus (773.4,
774.7), < 1 year-olds, USA*

Deaths Population Rate/100 K

1979-88 10 36,960,517 0.03
1989-02 9 51,966,560 0.02

*CDC Wonder, Accessed 7/10/03, 9/4/05

New Diagnostic Technologies

Cost: $4000 + $7/use

New Diagnostic Technologies -2

Cost: $19,000 + $15 per use

Stories: Cal Sheridan
 36-37 wk
2900 g boy
b.t.a. 35 y.o.
G1 O+ Mom
Nursing Notes, Age 17 hours

No bilirubin level sent.

Clinic Visit, 4.5 days

(-9%)
Return visit and outcome
 Next day, bilirubin 34.6 mg/dl Outcome:
Kernicterus (?)
 Verdict for defense in malpractice suit,
settled on appeal
 Same day: father diagnosed with spine
tumor, misdiagnosed as benign
Parents of Infants and Children
with Kernicterus (PICK)

www.kernicterus.org
“Never doubt that a small group of
thoughtful, committed citizens can change
the world. Indeed, it's the only thing that
ever has.”

Margaret Mead (1901 - 1978) US

anthropologist
JCAHO Sentinel Alert

NEWS RELEASE
JOINT COMMISSION ON ACCREDITATION OF HEALTHCARE
ORGANIZATIONS

JOINT COMMISSION ISSUES ALERT:

TREATABLE BLOOD DISORDER
PUTS BABIES AT RISK FOR BRAIN
DAMAGE, DEATH
JCAHO Sentinel Alert -2
Sentinel Event Alert • Issue 18 - April 2001
Kernicterus threatens healthy newborns
Kernicterus is a condition of newborns that leads to
severely disabling brain damage or death. It results from
hyperbilirubinemia that can be caused by a number of
factors. Kernicterus is preventable with techniques
currently available.

"This is probably happening more than clinicians know

about. With these recent cases, risk assessments were
inadequate and unreliable, and bilirubin levels were not
measured--or measured in time."
- Sue Sheridan
 1 /Kernicterus in Full-Term Infants --- United
States, 1994--1998

“In early 2001, a national support group for

parents of children with kernicterus conducted a
survey on kernicterus. A convenience sample of
15 families was identified by word-of-mouth or
through the Internet... Among the sample
families, seven did not complete the
questionnaire, four had children who did not meet
the case definition, and the remaining four had
children who did meet the case definition..”
Neonatal jaundice/kernicterus
summary
 No dispute about former over-treatment
or current treatment thresholds
 No good data on current incidence of
kernicterus, but it is rare
 Definition of the problem and proposed
solution strongly influenced by 1 story
(assisted by industry funding)
 Weak data, powerful stories
 Universal bilirubin screening is coming
 Press Release
AAP CALLS FOR AN END TO
LAP TRAVEL FOR CHILDREN
ON PLANES
AMERICAN ACADEMY OF PEDIATRICS
Committee on Injury and Poison Prevention
Pediatrics 2001;108:1218-1221
Ending lap travel: Background
 Children under 2 can ride on parent’s
lap with no ticket
 July 19, 1989: UAL #232 crash at Sioux
City, Iowa. Unrestrained infant dies.
 1990: US NTSB recommends
universal restraint
 July 12, 1994: Another “lap child” dies in
crash, NTSB urges FAA to require infant
restraint
FAA Study, report to Congress, 1995
 Methods
– Detailed analyses of survivability of previous
crashes
– Models of price-sensitivity of travel decisions
 Results:
– Infant restraint would prevent maximum of 5 infant
deaths over 10 years
– Net increase of 82 deaths over 10 years due to
diversion to less safe modes of travel
 Rejected as “flawed” by NTSB and Congress
Effects and Costs of Requiring Child Restraint
Systems for Infants Traveling on Commercial
Airplanes*
 Benefits: similar to FAA (6 deaths in 10 years)
 Risks: less than FAA when likely
characteristics of drivers and driving
considered (Net increase in deaths over 10
years 0-30 vs 82 )
 Costs: still high

*Newman TB, Johnston B, Grossman D. Arch Pediatr Adol

Med 2003;157:969-74
 Deaths caused or prevented
0.20
Increased deaths
0.18 Decreased deaths
Proportion Choosing to Drive

5.00
0.16
4.00
0.14
3.00
0.12
2.00
0.10
0.08 1.00
0.06 0.50
0.25
0.04 0.00
0.02 -0.25

0.00
0.20 0.36 0.52 0.68 0.84 1.00

Relative Risk of Auto Death for Families

Estimated Costs
 Assume no diversion to less safe modes of
travel

Cost per Cost per life Cost per life-

round trip saved year saved*
$200.00 $1,283,594,063 $42,786,469
$10.00 $64,179,703 $2,139,323
$1.00 $6,417,970 $213,932
$0.25 $1,604,493 $53,483
*Assumes 3% discounting
Congressional Testimony: Cost effectiveness
 Congressman Geren: “... five million enplanements.
Say it only costs $20. That's $100 million...If we gave
you $100 million and you were entrusted with saving
lives, where would you apply it, top priority?”
 Barry Sweedler, Director, Office of Safety
Recommendations, NTSB: “There is a long list of
safety issues that need addressing, and I think it's
probably best for us to try to lay out what the issues
are and try not to prioritize which safety issue is more
important than other safety issues...this seems to be
one of those areas where it just seems to make
common sense to go ahead and take that extra step.”
Congressional Testimony: Evidence
 Coming into Washington we ran into some turbulence
around some thunderstorms and there were some
other lap children that the mothers were having
trouble restraining. Many of them were crying and
screaming. The little kid in the safety seat slept
through the whole thing.
 So I think there is more than enough evidence that
substantiates what we're trying to do.
 The question, I think, Mr. Chairman, comes down to
how many more children must die, how many more
have to be hurt before we reach the threshold of
FAA's ghoulish cost/benefit ratio?
--Congressman Jim Lightfoot, Iowa
“Real” vs “Theoretical” Children
 “The argument in support of the FAA’s
resistance to the NTSB...is
unreasonable on its face and ridiculous
in its justification. It protects theoretical
children driving in cars at the expense
of real flesh-and blood infants whose
safety is unquestionably compromised
when flown as a lap-baby”

Nader R, Smith WJ. Collision course: the truth about airline safety. Blue
Ridge Summit, PA: TAB Books, 1994. Cited by Beshai D. Arch Ped Adol med
2003;157:953-4
Stories: UAL Flight 232: Jan Brown-
Lohr
Child Restraint on Airplanes:
Summary
 Good data
– Very little benefit
– Very high cost per benefit
– May cause net harm
 Notice of Proposed Rule-making issued by
FAA in 2001
 Decision NOT to change rule 8/25/05
 Victory for data?
 AP Story: NTSB on FAA Ruling
 "During takeoff, landing and turbulence,
adults are required to be buckled up,
baggage and coffee pots are stowed,
computers are turned off and put away,
yet infants and toddlers need not be
restrained," [NTSB Acting Chair]
Rosenker said in a statement.

Miller, L: Plane safety seat ruling unchanged for children

http://www.buffalonews.com/editorial/20050827/1073311.asp, accessed 9/4/05
 AP Story –FAA Response
 FAA spokesman Greg Martin said requiring
the seats would harm more children than it
would protect. "A lap child held firmly by a
parent doesn't result in second- or third-
degree burns like an unsecured pot of
coffee," Martin said.
 Three children who sat in their parents' laps
were among the 309 who survived the fiery
crash of an Air France Airbus A340 after it
overshot the Toronto runway, Martin noted.

Miller, L: Plane safety seat ruling unchanged for children

http://www.buffalonews.com/editorial/20050827/1073311.asp, accessed 9/4/05
Babies caught up in 'no-fly'
confusion
 WASHINGTON --Infants have been stopped
from boarding planes at airports throughout
the U.S. because their names are the same
as or similar to those of possible terrorists on
the government's "no-fly list."

It sounds like a joke, but it's not funny to parents

who miss flights while scrambling to have
babies' passports and other documents
faxed...

Miller, L. http://homelandsecurity.osu.edu/focusareas/transportation.html
accessed 9/4/05
What makes stories powerful?
 More interesting than numbers
 More understandable than numbers
 Emotional connection to story teller (a
real person,” not scientific or political
establishment)
 Passion, sustained commitment of
story teller
Stories
 ““Humans are primates who tell stories.”
Stephen Jay Gould, PhD

 “Humans are primates whose cognitive

capacity shuts down in the absence of a
story.”
Robyn M. Dawes, PhD
Cognitive psychologist
Author: “Everyday Irrationality”
Stories and Politics
 “...Rather than understanding policy-makers as
problem-solvers who apply objective, scientific, and
value-free methods to cure society’s ills...think of
policy-makers as performers who seek to persuade
an audience...
 A policy argument, in consequence, tells a story: it
provides a setting, points to the heroes and villains,
follows a plot, suggests a solution, and, most
importantly, is guided by a moral.*

*John Adams and Michael Thompson. Taking account of

societal concerns about risk: Framing the problem. A report
for the Health and Safety Executive.
Risk perceptions and preferences
 Involuntary risks perceived as worse than
voluntary risks
 Identifiable victims/lives saved valued much
more than statistical lives saved
– Cure valued more than prevention
– Preventing rare disease valued more than
decreasing common disease even if fewer lives
saved
 Equity is valued
Jaundice Story
 Heroic PICK mothers fighting ignorance and
managed care efforts to save money
 Solution: Universal bilirubin screening
 Moral: need to protect the vulnerable
 Risk involuntary: PICK moms not warned
that jaundice can cause brain damage.
 Identifiable victims: KI considered separately
from Cerebral Palsy
Safety Seat Story
 Story -- heroic, dedicated flight attendants,
congressmen against unfeeling bureaucrats
 Solution: Require universal child restraint
 Risk is both involuntary (to infant and other
passengers) and voluntary (parents decide)
 Plane crash victims are identifiable; car crash
victims an anonymous “drop in the bucket”
 Equity: Infants deserve same level of
protection
Possible approaches/
Recommendations -1
 Divide and conquer
 Recognize and publicize the problem
 Get stories (and story tellers) that
support best public health choices
– Harder to get stories that support NOT
doing something that is only too expensive
 Avoid polarization -- meet with the
opposition.
Possible approaches/
Recommendations -2
 Focus on deliberative bodies and
opinion leaders
 Try to discuss how decisions should be
made separately from the specifics of a
particular decision
 Get passionate about good decision
making
 Year-over-year Changes in Passenger Enplanements and Passenger Car
and Light Truck Miles Traveled, 1981-2002

12%

10%

8%

6%

4%

2%

0%

-2%

-4%

-6% Air Traffic

Controller Strike Gulf War
-8% Sept. 11, 2001
1981

1982

1983

1984

1985

1986

1987

1988

1989

1990

1991

1992

1993

1994

1995

1996

1997

1998

1999

2000

2001

2002
% Change in Passenger Enplanements
% Change in Passenger Car and Light Truck Miles Traveled
 Passenger Car and Light Truck Fatalities and Aircraft
Passenger Enplanements, 1980-2002
45,000
750,000,000

40,000
650,000,000
Enplanements

35,000

Fatalities
550,000,000

30,000
450,000,000

350,000,000 25,000

250,000,000 20,000
1980
1981
1982
1983
1984
1985
1986
1987
1988
1989
1990
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
2002
Domestic Passenger Enplanements
Passenger Car and Light Truck Occupant Fatalities
 Motor Vehicle Occupants Under 5 Years of Age
Killed in Crashes, 2000-2002

600 539
513
500 472

400 350
317
291
300
179 180 168
200

100

0
2000 2001 2002
Total All Types Passenger Cars Light Trucks
· Totals include crashes involving passenger cars, light trucks, large trucks,
motorcycles, buses, and other/unknow n vehicle types.
· Data available from the National Highw ay Traffic Safety Administration at
http://w w w -nrd.nhtsa.dot.gov/pdf/nrd-30/NCSA/TSFAnn/TSF2002Final.pdf
Children Under 5 Years Old
 Road fatalities to all vehicle occupants
under 5 years old decreased 12.4%
between 2000 and 2002.
 Injuries decreased 11.9% between 2000
and 2002.
 Estimated resident population of
children under 5 years old increased
1.9% between 2000 and 2002.
Summary
 Even in extreme cases, the historic
relationship between diversion from air
travel and increased risk of fatality or
injury in highway accidents is not clearly
apparent.
 Accident risk is not evenly distributed
among all drivers, vehicle types, and trip
conditions.
 No evidence was found to suggest an
increased risk for children under 5 years
old.
Additional Application:
Pseudodisease
 Pseudodisease: disease that looks just
like real disease pathologically but
would cause no problems
 Identified with screening tests, causing
net harm
 Can’t tell from disease in an individual
patient
 Hard for people to grasp because there
are no stories
Alternative story line
 Villains -- emotional, irrational,
nonscientific people and for-profit
corporations
 Heroes -- rational, scientific, impartial
researchers who do not accept industry
money
 Moral: follow the money, keep the
broadest possible perspective!
 Information for Parents: The
Jaundiced Baby
Jaundice in Newborns and its
Treatment
About 60% of newborn infants in the
United States are jaundiced, that is
they look yellow. Excessive jaundice in
newborn infants may cause brain
damage.

www.kernicterus.org
The Nuclear Non Proliferation Treaty,
Article VI

 “Each of the Parties to the Treaty

undertakes to pursue negotiations in
good faith on effective measures relating
to cessation of the nuclear arms race at
an early date and to nuclear
disarmament, and on a treaty on general
and complete disarmament under strict
and effective international control.”
 Signed by the U.S. 1968, ratified 1969

http://disarmament.un.org:8080/TreatyStatus.nsf
What does if mean if a treaty is
ratified?
 Article VI, U.S. Constitution:
– “This Constitution... and all treaties made, or
which shall be made, under the authority of
the United States, shall be the supreme law of
the land; and the judges in every state shall be
bound thereby...

– “The Senators and Representatives...and the

members of the several state legislatures, and all
executive and judicial officers, both of the United
States and of the several states, shall be bound
by oath or affirmation, to support this
Constitution...”
 AAP Guidelines (1994)
Total Serum Bilirubin, mg/dL
Exchange
Exchange
Consider Transfusion
Age Photo- Transfusion
Photo- if Intensive
(hrs) therapy and Intensive
therapy Phototherapy
Phototherapy
Fails

24 hrs --- --- --- ---

25-48 hrs 12 15 20 25
49-72 hrs 15 18 25 30
>72 hrs 17 20 25 30
Reemergence of Kernicterus In Babies Discharged As
Healthy In 1990s:
Review of 5 Decades of Reports in the Literature.
Vinod K. Bhutani and Lois H. Johnson

N=154
Case Reports per Each Year

12 Plus
new
10 Cases

8
6
4
2
0
53-62 683-72 73-82 83-85 86-88 89-91 92-94 95-97 98-01

http://www.pickonline.org/presentation.ppt, Calender Years

accessed 7/10/03

PAS Meeting 2003: Abstract

 Kernicterus Registry: Definition and
Eligibility*
 Acute phase kernicterus
– Irritability and hypertonia with early retrocolis and
opisthotonus and drowsiness, poor feeding, high-
pitched cry, alternating tone or failed ABR
 Chronic kernicteric sequelae: Abnormality in
at least 2 of the following, at least one severe:
– Extrapyramidal movement disorder
– Gaze abnormalities
– Auditory disturbances
– Intellectual deficits
– Enamel dysplasia of deciduous teeth

Johnson LH, Bhutani VK, Brown AK. J Pediatr 2002; 140: 396-403
How common is kernicterus?
 Pilot kernicterus registry: 90 cases in 15
years in the US
 Northern California Kaiser Permanente
– No cases in 111,000 births, 1995-8. (11 had TSB
> 30 mg/dl1 )
– No cases found yet in 119,000 births, 1991-4
– ? 2 potential cases 2003?
 California Cerebral Palsy Project2
– 1 case in 155,636.
– (Total of 192 cases of CP in that study.)
 Denmark, 1994-8 ~1/65,0003

1 Newman TB et al. Pediatrics 2003;111:1303-11

2 Cummins SC. Personal communication. 3Ebbesen F Acta Paediatr 2000;89:1-5
 How Common Is Kernicterus?
 Problems:
– No uniform surveillance
– Trade-off between sensitivity and specificity in
case definition – no standard
– Diagnosis of kernicterus often delayed, uncertain
and contentious
 Probably between 1/100,000 and 1/250,000 =
16-40 cases per year in the US
 MUCH more common in some other
countries, especially in Africa
– Southern Nigeria: 9/20 infants readmitted with
TSB > 15 mg/dl (45%)1

1 Slusher TM et al. Pediatr Res 2003 Abst #2865

 CO

Pathophysiology
MMWR Case Reports: missing
information
 #2 (Cal Sheridan) The follow-up visit
when OM diagnosed
 #3 The child has congenital nephrotic
syndrome -- a low albumin probably
contributed to risk
 #4 At 4 days Mother declined a home
health visit and reported that jaundice
appeared to be fading