Peds Lines Align Your Interest with AAP Spring/Summer 2012

Peds Lines
Spring/Summer 2012
Align Your Interest with AAP
By Stuart Sweet, MD, FAAP, Chapter President
As your new
president, I would like
to thank each of you
for providing me with
the opportunity to serve
you during my two-year
term. During my tenure,
I hope that the Chapter
will continue to serve
an important role in
advocating for the needs
of Missouri’s children.
I have appreciated the
wisdom and guidance
of those who have served before me,
particularly Dr. Claudia Preuschoff.
One of the key priorities during
my tenure will be to work to find
opportunities to match the interests
and expertise of our members with the
missions of the Chapter and/or the
AAP. Please don’t hesitate to contact me
directly if you see an opportunity where
your interest and expertise aligns with a
Chapter or AAP national initiative.
I would like to highlight a few
people who were recognized at the
recent Chapter meeting. On behalf of
the Chapter, I would like to thank Tom
Tryon, MD, who completed his term on
the Executive Committee in November,
for his service as a chapter leader. During
his tenure on the board and his term as
President, Dr. Tryon played a key role in
many important changes, including the
expansion of the chapter committees,
hiring our current and excellent,
executive director Johanna Derda, the
development of a Pediatric Council, and
most importantly, facilitating pediatric
representation on the Missouri Services
Commission (Dr. Tryon and I have
participated in the last two meetings
– more on the CSC in the fall). Dr.
Inside PedsLines
Tryon will stay involved
with the Chapter, chairing
the Committee on Sports
Medicine and Fitness
which plans to develop
a handbook on sports
medicine and fitness. More
importantly, Dr. Tyron was
recently appointed Chair
of the AAP Committee
on Membership, a key
position within the AAP.
Congratulations Dr. Tryon!
Secondly, I would like to
acknowledge the recipient of the 2011
Missouri Child Advocacy Award, Jeff
Grisamore. Rep. Grisamore serves
as chair of the Missouri Children’s
Services Commission and has been
instrumental in adding private sector
representation to the commission,
including a pediatrician, hospital
administrator, family physician,
child advocate and parent. Rep.
Grisamore has expressed interest in
making the CSC function more like
a Children’s Cabinet. Among his
other efforts on behalf of children,
Rep. Grisamore sponsored legislation
during the last Missouri legislative
session to develop a Missouri Task
Force on Prematurity and Infant
Mortality charged with seeking
evidence-based and cost-effective
approaches to reduce Missouri’s
pre-term birth and infant mortality
rates. We appreciate our continued
partnership with Rep. Grisamore.
Thirdly, I would like to welcome
Sandra McKay, MD, to the executive
committee as Secretary/Treasurer. Dr.
McKay is a general pediatrician who
practices in O’Fallon, Missouri. She
President’s Message
2 Advocacy Day 2012
3 A Call to Advocacy
4 Opportunities for Advocacy
6 Youth and Healthcare Legislation
8 A Look Back: Joplin
10 AAP Infectious Disease Committee Report
11 AAP Drug Committee Report
12 AAP Pediatric EM Report
13 AAP Resident Report
Pediatric Medicine
16 Pulse Oximetry Screening
18 Components of Medical Home
19 Vaccinations & Parents’ Fears
26 Pediatric Lessons
Consider the
Future of PedsLines
We would like your feedback on
the format and delivery medium
PedsLines will take in the future.
In particular we are considering
reducing the number of print copies
generated by going to a hybrid model
where members receive an electronic
(PDF) copy of each issue unless a print
copy is requested.
Please let us know what you think of
this idea.
Email me at [email protected]
Continued on page 8
Spring/Summer 2012
Peds Lines 1
Pediatric Advocacy
Advocacy Day 2012: Speaking up for Children
By Sandy McKay, MD FAAP
Pediatricians united in
Jefferson City to speak up for
children on March 7, 2012, as
a part of the Second Annual
Child Advocacy Day.
This event, generously
sponsored by the Missouri
Pediatric Foundation,
featured pediatricians and
trainees across the state of
Missouri, working closely
with MoAAP. A record 51
attendees participated in an
exciting and engaging day.
Many were new to
advocacy and had not met
with a legislator in the past.
Everyone met in a large group
to learn about issues important to child
health, and had the opportunity to meet
with lobbyists and experienced advocates.
Then it was off to the races!
Participants were able to meet with
their own Senator and Representative,
along with the opportunity to meet other
legislators in hallways and offices. Our
voices for children were united to educate
legislators on important child health
issues, including the Medicaid program,
vaccination, and vision screening policies.
Dr. Whitney Bour, a Pediatric
Resident from Washington University
noted: “Legislators were appreciative of
the opportunity to receive education about
health care related issues from medical
professionals and encouraged us to keep
coming back.”
The day certainly brought forth
the primary lesson that legislators are
bombarded with numerous issues, often
being asked to make quick decisions at a
moment’s notice. They rely on staff and
citizens like us to guide them and educate
them on issues.
Dr. Sheanita Howard, a Pediatric
Resident from Saint Louis University, felt
that legislators respected our information,
saying, “After we explained our position
to them, a couple of people changed their
2 Peds Lines
Spring/Summer 2012
She reported that a legislator said, “I
voted the wrong way, and I won’t make
that same mistake again.”
Many participants felt empowered
after their visits, feeling like they were
really listened to and made a difference for
Dr. Maya Moody, Pediatric Resident
from University of Missouri Columbia,
reported, “Our presence was well noted
and well received by the legislators.”
The day wrapped up with a debriefing
where pediatricians discussed how exciting
it was to meet with legislators and see that
impact immediately. They also noted the
dynamics to the legislative system, and the
importance of a repeated and consistent
Advocacy Day did more than serve
as a forum for educating legislators on
child health issues. It served as a means of
education for trainees and new advocates,
and an opportunity for mentorship for
experienced advocates. Advocacy Day
provided a rare opportunity to work with
community pediatricians, attendings at
academic centers, residents and medical
students from across the entire state.
According to Dr. Pooja French,
an attending at from Children’s Mercy
Hospital, “This was a great opportunity to
meet with other physicians that share the
same passions and form new connections.”
All who attended left the day more
educated on how to be an advocate for
children. They were challenged to take
the message of doing what is right for
children back to their institutions to
continue informing, speaking up, and
giving that critical voice for those who
cannot speak for themselves.
Advocacy Day is an annual event
that can offer pediatricians at any point in
their career the opportunity for education,
engagement, and action. Please consider
joining your colleagues next year!
Dr. Sandra McKay is the SecretaryTreasurer of the Missouri AAP Chapter,
she also serves on the Legislative
Committee. Dr. Ken Haller from Saint
Louis University/
Cardinal Glennon,
Dr. Kristin Sohl,
University of
and Dr. Sandra
McKay have
chaired Advocacy
Day for the past
two years.
Pediatric Advocacy
A Call to Advocacy
By Gary Pettett, MD, 2011-2012 President, Missouri State Medical Association
In the seventy-plus years since the
Second World War, medicine in this
country has undergone a transformation
with little historical precedent. Advances
in medical technology and clinical research
have provided physicians with the tools to
better treat and manage many of the most
common diseases. Childhood illnesses
that had previously so devastated families
are now largely preventable through
routine infant vaccination programs. Life
expectancy has increased from 45-50 years
in the early 1900s to nearly 80 years today,
and premature mortality rates, unexpected
deaths during life’s most productive years
have dropped dramatically.
The transition to a more technologydriven, research-based medical practice has
also had a significant effect on the nature
and structure of medical practice. In the
early 1900s, there were two somewhat
distinct categories of medical practice –
general medicine and surgery – although
in most rural areas this distinction was
less obvious. As new technologies were
introduced and the body of fundamental
biomedical knowledge expanded, it became
nearly impossible for those in the general
practice of both medicine and surgery
to stay abreast of the rapidly increasing
information and maintain the skills that
new technology required. Physicians began
to focus, specialize, in specific areas. Today,
the American Board of Medical Specialties
recognizes a broad range of medical/
surgical specialties and a growing number
of even more narrow subspecialties, each
with its own specialty boards, educational
programs, and a growing number of
political action arms. Where once there
existed a fairly singular “voice of medicine”
there is today a widening diversity of
special interests.
As the voice of medicine became more
diverse, third-party health insurance plans
and the Federal and state governments
were accounting for an increasing
proportion of healthcare expenditures.
Together, these two entities now account
for nearly 80% of the payments for all
health related expenditures and have
assumed an increasingly aggressive role in
directing medical decision making.
Today, in the wake of the passage of
the Patient Protection and Affordable Care
Act (ACA), we are all mired in a significant
and probably game-changing debate over
the future direction of health care. Of
those at this debate, only physicians and
their patients have as their principle moral
responsibility the provision of beneficent,
non-maleficent patient-centered care.
Private, third-party payers are largely
fiduciary institutions whose major concerns
are short-term control of their health care
expenditures. Their primary responsibilities
are to their directors and shareholders and
their interests in personal health care are
likely well-intended but are clearly only
secondary interests. Government agencies,
on the other hand, focus in broad health
care policy decisions. They view health care
not from an individual perspective but from
a utilitarian standpoint. Characteristically,
government health care policies are
well-intended at their inception, but last
far beyond the problems they intended
to solve, create a burdensome body of
regulations and a vast bureaucracy, and
often wind up costing far more that was
ever intended or envisioned.
If we are to develop a health care
delivery system for the future that is cost
effective, that addresses the needs of our
patients and does so in a fashion that, in
their and their doctors eyes, has significant
value, physicians and patients will need
to re-assume their leadership roles in
medical decision-making. For physicians
and their professional organizations, it is
a call for advocacy, both patient-centered
and profession-centered. While some of
the issues facing medicine have specialtyspecific implications (e.g. identifying
quality outcomes), many others have
broad implications for physicians and
patients in general, not just neurosurgeons,
obstetricians, pediatrician or other
subspecialist. Repealing/replacing the
flawed SGR reimbursement formula,
redefining reimbursement models with a
more quality-centered focus, reforming the
medical tort system, and ensuring adequate
support for graduate medical education
are but a few examples that resonate
across specialty/subspecialty lines. For
these broader issues it is critical that the
House of Medicine join in a united effort
and respond in a loud voice. Medical and
specialty societies need to find a common
ground and common forums to more fully
join in effective advocacy efforts.
Over this last year as MSMA
President I have tried to initiate steps that
foster collective action for some of the
broad issues affecting medical practice
and physician education. First, we have
begun regular meetings with the Deans
of the six Missouri medical schools to
focus on issues of mutual concern and
have collectively done so in addressing
proposal to cut/eliminate Federal funding
for residency training. Secondly, MSMA
is in the process of working with our
medical schools to establish an advocacy
clerkship for students that focuses on
both legislative activities and experiences
within various state health care agencies.
Thirdly, in conjunction with the Missouri
Chapter of the AAP, MSMA has launched
an educational campaign stressing the
importance of early infant vaccination in
the prevention of previously devastating
childhood infectious diseases. Finally, it is
my hope that liaison activities between all
of the medical professional organizations
will find avenue to share information and
to strengthen their advocacy efforts.
The time for advocacy seems critical. I
would encourage all physicians to be active
in both their specialty/subspecialty societies
and their local/regional medical societies.
Our effectiveness is dependent upon your
support. It’s time, it’s important, and it’s
in the best interest of medicine and our
P. Gary Pettett, MD, a board-certified
Pediatrician and sub-board certified
Neonatologist is from Kansas City,
Missouri. He
practices at
Children’s Mercy
Hospital in the
Neonatal Medicine
Section and at
the University of
Missouri-Kansas City
School of Medicine.
Spring/Summer 2012
Peds Lines 3
Pediatric Advocacy
Opportunities for Advocacy to Protect Our Children
By Molly Droge, MD, FAAP
Advocacy for children and families is what
pediatricians do every day in local practice settings and
communities. Many of us extend our advocacy for children
to our state officials in Jefferson City, as well as to the
federal levels of government in Washington, DC. The
American Academy of Pediatrics (AAP) has two unique
committees dedicated to the facilitation of advocacy by
pediatricians and AAP leaders at both state and federal
The Committee on State Government Affairs
(COSGA) serves as an advisory group, providing insight
and advice to the dedicated AAP Staff of the Division of
State Government Affairs. DOSGA monitors child and
family issues and trends for all 50 states and the District
of Columbia (DC), and assists AAP Chapter leaders and
pediatricians with state-related advocacy. COSGA is made
up of six AAP fellows from around the country who have
extensive experience in advocacy and the state political
process. Each member may serve three two-year terms for
a maximum of six years. The Chair may serve up to four
one-year terms.
Working closely with the staff and lobbyists in
the AAP Department of Federal Government Affairs
(DOFGA) in Washington, DC, the Committee on Federal
Government Affairs (COFGA) and its Sub-Committee
on Access to Care monitor and actively participate in
influencing federal legislation as well as executive branch
decisions, issues, and policy-making that affect children,
families and pediatricians. The committee member and
chair terms are the same as for COSGA.
DOFGA and DOSGA also follow judicial decisions
made in state, district and federal courts that affect
pediatric-aged patients, young adults, families and
pediatricians. In order to facilitate communication of
all of the information that is pertinent to the AAP State
and Federal Government committees and staffs, COSGA
has two liaison members (the Chairs of COFGA and its
Subcommittee on Access to Care) while the COSGA Chair
serves as liaison to COFGA and the Access Subcommittee.
Committees, Councils and Workgroups. DOSGA sends
out regular web-based publications, like State Health,
State View, Advocacy FLASH, Medicaid & CHIP
Monitor, to alert pediatricians to issues that need their
attention and advocacy. DOSGA also provides critical
consultations to chapters and individuals on numerous
urgent and confounding issues that affect children and
pediatricians. Recent consultations include advice on the
impact of cuts to state Medicaid programs, state exchange
implementation, and last year’s Florida legislation that
prohibited physician firearm counseling to families and
As Chair of COSGA and liaison to COFGA and
the Access Subcommittee, I make several trips a year to
the Chicago area and Washington, DC for discussion
and strategy meetings on many of the issues and events
with colleagues, staff, and policy experts. We spend
time visiting our respective congressional delegations in
Washington, DC to help them understand our positions
on issues important to children and pediatricians and to
learn about their concerns and positions. The AAP Staffs
for State Government, Federal Government and Access
Sub-committee are truly amazing in their knowledge,
connections, insight and guidance through these daunting
State Government Affairs monitor issues and policy
development, identify trends, and make suggestions to
the AAP leadership, Chapters, Committees, Councils and
Sections for advocacy on over 200 legislative and advocacy
issues for all 50 states and DC. The major issue categories
range from Health Care Reform to Environmental
Health, Immunizations, Bullying Prevention, Nutrition
and Obesity, Injury Prevention, School Health, Substance
Abuse, and Tobacco.
Committee members and SGA staff review policy
papers and issue briefs from other AAP Sections,
4 Peds Lines
Spring/Summer 2012
State Government Affairs provides numerous
educational opportunities on Advocacy and state issues,
• Collaboration for creation of the AAP Advocacy
Guide to teach basic and more advanced advocacy
skills, including power point presentations that can
be adapted to any audience;
• Maintenance of the SGA website with multiple
resources on MYAAP, the new AAP Members
Only Website;
• Presentation of educational opportunities in
collaboration with Federal Government Affairs
(FGA) like the Chapter Advocacy Summit every
two years and the Legislative Conference in
Washington, DC (SGA and FGA committee
members and staff serve as faculty for both of these
• Webinars on various hot topics, like “Health Care
Reform Implementation in the States,” “Health
Insurance Exchanges,” and “Avoiding the Muzzle:
Ban on Firearm Counseling in Florida;”
• Presentations at the AAP Annual NCE meetings,
and multiple issue-driven discussions at the ALF,
District, Chapter and Executive Director meetings.
Pediatric Advocacy
“Never underestimate the power of a small group of
committed citizens to change the world.
Indeed it is the only thing that ever has.”
-Margaret Meade, 20th Century Anthropologist
mazes of complex issues. We all admire and appreciate their
generosity and perseverance in providing knowledge and
assistance in our advocacy efforts.
Over the past four years much of our three committees’
(COSGA, COFGA, and Access Subcommittee) time and
efforts were focused on:
• CHIP Reauthorization and the ARRA stimulus
funding in 2009;
• The prolonged effects of the national economic
recession and downturn in the state revenues,
which are now slowly coming back;
• Multi-year state budget deficits and the impacts of
the budget cuts required in many states to meet the
Balanced Budget requirements in states;
• Ongoing threats to access to care and benefits for
children in Medicaid and CHIP; (The Maintenance
of Effort clause of the ACA has protected state
Medicaid/CHIP enrollment and eligibility for
children so far.);
• Debate and passage of the Affordable Care Act
• Rules writing and implementation efforts of the
ACA at federal and state levels;
• Legal and political challenges to the new health
reform law; and
• Consequences of unemployment, lack of health
insurance, medical underinsurance, prevalence of
homelessness and food insecurity for children and
As Pediatricians we have the clinical expertise and the
compassion for children and families to care about what
happens to them within and outside medical settings.
Needless to say, all of these issues are difficult with
complex histories and unpredictable outcomes of the many
challenges to our issues both this year and into the future.
We certainly do have significant successes to celebrate
in our advocacy for children over the past few years. Our
advocacy contributed to the successful reauthorization of
the Children’s Health Insurance Plan (CHIPRA) in 2009
and to the inclusion of many considerations of children and
families in the Patient Protection and Affordable Care Act
(ACA) in 2010.
We still, however, have significant unresolved
challenges. Among the biggest SGA challenges are the
many infrastructure projects that states need to complete
to implement ACA along its ten-year timeline and beyond,
as well as persisting state budget gaps from the 2008-
2009 Great Recession that required federal and state cuts
in infrastructure, health care, education and other areas
that affect the health, well-being and future of families
and children. Most advocates agree that the two most
significant challenges to health care reform may be the
results of the Supreme Court ruling on the fate of the
ACA, expected in June 2012, and the impact of the 2012
state and federal elections results in November.
If you have the opportunity and interest to get involved
in a state committee with our MoAAP Chapter, or in a
national AAP committee, council, section, workgroup,
or elected office, I encourage you to get involved with
advocacy and influencing policy-makers at all levels.
Experiences from networking and collaborating with
advocacy colleagues from your community, the state, the
country, even from around the world, on issues of mutual
interest are fascinating, challenging and essential for our
profession and for the children we care for.
We should not assume that our elected officials
know, or will do, what is best for children. It is our
heritage and responsibility as pediatricians to speak
up for children and families, just as it is for our future
as a profession to speak up for ourselves and our
practices. This applies equally to the opportunities
that we have on the federal level as well as to those
right here in Missouri with our Missouri AAP
Chapter. W ith both the state legislature and Congress
now in session, please take a couple of minutes on a
regular basis to call or email your elected officials, or
their staffs, to share your opinions and experience on
issues or bills that affect children and families, or you and
our profession. Our advocacy does, and will continue, to
make a difference.
Molly Droge, MD, FAAP is a
General Pediatrician and Child
Advocate from Parkville, MO. She
is a member of the MoAAP Chapter
Legislative Committee and the
current Chair of the AAP Committee
on State Government Affairs.
For questions or comments,
please contact me at
[email protected]
Spring/Summer 2012
Peds Lines 5
Pediatric Advocacy
Motivating the Youth of Missouri to
Involvement in Health Care Legislation
By Erica D. Wiebe, MD
PL-2, University of Missouri Department of Child Health
The room was buzzing with
people and the scent of coffee. There
were individuals from all walks of the
medical realm in the state of Missouri.
It was Saturday morning, January 21,
2012, and as the MSMA conference
on Grassroots Advocacy Training
was about to begin, I thought back to
some of the patients I had seen the
previous afternoon. No doubt the
teenager with influenza was asleep in
bed. Sick or not, he would probably
be sleeping in any given Saturday. My
eyes surveyed the room before me and
it occurred to me, aside from one other
woman, I was amongst the youngest in
the room by about 20 years. Granted,
I am aware this particular conference
wouldn’t exactly attract nonprofessionals but it made me wonder
how many of my teenage patients have
ever actually thought about the law
and their health. Taking the thought
a step further, what about the college
students from Mizzou? What about
the medical students?
The conference commenced
and what followed was a very eyeopening discussion on the best ways
to advocate for legislation you care
about. When’s the best time to
contact Congress? Who do you talk
to? What’s the most effective form of
communication? How do you become
“real” to those who represent us in
government? It was fantastic, but I
had to wonder – how can I bring this
to my patients?
In 30 years, most of the people
in that room probably won’t be
involved in legislation anymore and
the teenager at home with influenza
6 Peds Lines
Spring/Summer 2012
will. Little does he know, but
decisions regarding things that affect
his moment to moment life are made
every day in Jefferson City. Votes are
continually cast on issues he’s going
to eventually question. But how can
I get him to think about these things
NOW? Teenagers go to school,
participate in extracurricular activities,
hang out with friends, come home and
then do it again the next day. They are
constantly on the go and ever present
is the cell phone and the internet.
What if there was a way to send text
messages to teenagers with links to
relevant health care legislation issues
in the news? A quick internet search
on the idea revealed that plenty of
people are studying the impact of text
and the role it can play in the health of
teens but I couldn’t easily locate such
a service already in action. Regardless,
it made me wonder if there isn’t more
we can do to motivate even those on
the verge of voting to learn more about
what’s happening daily that already
affects them.
When the presentation was over,
I glanced around the room again.
What we had just discussed applied
not only to me but also to my patients.
In reality, it won’t be long before that
teenager with the flu is standing in a
room like this. It’s my job, and the
job other health care professionals to
make these issues tangible. How best
to do that has yet to be realized.
Erica D. Wiebe is a second year resident
in Pediatrics at
the University
of Missouri.
Her future
plans include
pursuing a
fellowship in
Pediatrics or
Pediatrics in
the state of Missouri.
Disaster Preparedness to Meet Children’s Needs
tHe iBD CenteR At
St. LouiS CHiLDRen’S HoSPitAL
Treating patients with inflammatory bowel diseases (IBD) like Crohn’s disease
and ulcerative colitis takes a team. At the IBD Center at St. Louis Children’s Hospital,
pediatric specialists provide individualized care for every aspect of a patient’s disease,
and combine multiple appointments with specialists into a single visit.
• Overall medical supervision by experienced pediatric gastroenterologists
• Emotional support provided by pediatric psychologists and counselors
• Nutrition counseling by a registered pediatric dietitian
• Surgical consultation with pediatric surgeons as needed
Convenient, PeRSonALiZeD SeRviCeS to Meet tHe neeDS oF eACH FAMiLY.
To learn more about the IBD Center at St. Louis Children’s Hospital, visit
To refer a patient, call Children’s Direct at 800.678.HeLP (4357).
Spring/Summer 2012
Peds Lines 7
Unoccupied Beds Could Mean
Trimming Pediatric Services
By Ted Barnett, Chair of Missouri’s Disaster Team
Looking back at the Joplin
tornado event response, we can
see that the initial response, both
from local and regional providers,
was tremendously effective. While
one hospital was destroyed, the
remaining hospital, as well as those in
surrounding communities, was able to
absorb inpatients while continuing to
care for the injured and ill.
It is significant that those
remaining hospitals were not already
at capacity. If that had been the case,
the outcome might have been quite
different. Many parts of Missouri,
particularly the urban areas, have
hospitals constantly at or above
capacity. This is especially true during
the winter months. Intensive care beds
are even more at a premium.
Increasing specialization, in skills,
equipment, and physical plant, has
resulted in many facilities no longer
capable of providing care to certain
populations, and this is certainly true
of pediatrics. Pediatric inpatient beds
in community hospitals are shrinking
or becoming non-existent. More
and more children are being referred
to pediatric hospitals. When there
are adequate beds available at these
facilities, this approach seems ideal
given their specialty resources and
familiarity with the unique problems of
As fewer children are admitted at
non-pediatric hospitals, pediatric skills
and expertise are used less often and
begin to erode. Many hospitals in the
metropolitan areas will no longer admit
children and it is uncertain whether
they have equipment and skills to
provide pediatric care. Even hospitals
that still admit children may have very
few cases, again making skill retention
difficult. Things become problematic
if there is a surge of patients from
whatever cause.
President’s Message, continued from page 1
brings experience in advocacy (she was
co-chair of last year’s Advocacy Day),
energy and enthusiasm to our group.
Dr. McKay will be working with Dr.
Steele and others to develop a social
media presence for the chapter as well as
enhance our young physician presence.
Welcome aboard Dr. McKay!
Finally, I would like to bring to
your attention an important upcoming
MO-AAP chapter event: On April 13,
the Chapter will co-sponsor and open
forum on Foster Care in Missouri to
be held on the campus of Saint Louis
University. Thanks to the efforts of Drs.
Sarah Garwood, Mark Eddy and Mike
Moran, this event will bring together
pediatricians, members of the community
and government leaders to discuss the
8 Peds Lines
Spring/Summer 2012
challenges facing children in Foster Care.
Check the MO-AAP website for more
Please don’t hesitate to contact me
directly if you have feedback or an interest
or idea that you would like to share with us.
I hope this season of renewal is bringing
you and your family fulfilling energy and
happiness. Enjoy this issue of PedLines!
Dr. Sweet is a pediatric pulmonologist and is
currently Associate Professor of Pediatrics at
Washington University. He serves as medical
director of the pediatric lung transplant
program at St. Louis Children’s Hospital. He
holds hospital leadership roles related to
health information systems and electronic
health records. Email Dr. Sweet: Sweet@
In the 1980s, hospitals often had
significant numbers of unoccupied
beds that provided a safety net
if a patient surge occurred. As
reimbursement for care has changed,
hospitals have become much leaner
and the number of beds available
as a percentage of the population
has decreased. Pediatric beds are no
different in this regard. Add to this
the concentration of pediatric beds
(particularly PICU beds) in only a few
facilities and you have a fragile system.
The current shortage of nurses and
other health care workers limits surge
response as well.
What can we do to improve
the situation? It is unlikely that
governments will provide funds to
maintain empty beds or to mothball
hospitals for later emergencies. Even
if that were the case, the shortage of
trained staff becomes the limiting
factor. The current medical business
model makes it unlikely that pediatric
hospitals would want to give up
existing patients or that community
hospitals would want to admit a few
children simply to maintain skills or
capabilities. That seems to leave us
with “just-in-time” approaches.
To provide a reasonable level of
pediatric care requires a minimum
level of expertise of both physicians
and nurses and adequate equipment
appropriate to caring for children.
Using judicious selection of patients,
established caches of equipment, solid
clinical practice guidelines, regular
education of potential providers, and
just-in-time training and support by
a cadre of experienced clinicians, we
might be able to provide sufficient
beds to care for children during
a surge event. All of this requires
preparation: time, some funds, and an
organized approach.
Pediatricians must take the lead
in solving this challenging problem,
partnering with nurses, hospital
administrators, and government. The
solution I gave is only one approach.
Is there a better way? If you have
ideas or successful local plans please
share them. I welcome your comments,
criticisms, and energy!
Mercy Children’s Hospital
When your child needs medical attention, you want doctors and nurses who are knowledgeable
and experienced. But just as importantly, you want a medical team that cares as much as you do
about your child’s well-being. At Mercy Children’s Hospital, our whole focus is your child’s health –
body, mind and spirit. It’s part of our legacy of faith-based care, more than 150 years strong.
We are Mercy Children’s Hospital:
and more
Spring/Summer 2012
Peds Lines 9
AAP Reports
AAP Committee on Infectious Diseases Report
By Mary Anne Jackson, MD
The final edits for the 2012 Red Book are almost
complete and pediatricians can look for their new copy
very soon. Other issues of interest to practitioners:
1. While a little later than usual, influenza has arrived.
The ACIP emphasizes the approach to diagnosis and
treatment of influenza in children and adults in this
document and it is consistent with recommendations
from the AAP. See
2. Emphasis is placed on when to use and how to interpret
rapid influenza diagnostic testing. Clinicians should
be aware that RIDT are highly specific but sensitivity
varies; a negative RIDT does not exclude influenza and
treatment should not wait for laboratory confirmation. In
addition, antiviral dosing is defined. Adults over 65 years
and pregnant and postpartum women are considered
high risk for serious complications from influenza. In
the pediatric population, children under age 2 years and
particularly under 6 months of age are included in the
high risk patient groups (along with those of all ages
who have chronic medical conditions, abnormal airway
clearance, are morbidly obese, immunocompromised, on
chronic aspirin therapy or American Indian or Alaskan
Native. These groups are most likely to be hospitalized
and have higher death rates. In outlining the treatment
recommendations, pediatricians recognize that mild
febrile URI may be caused by other viruses (ie RSV,
rhinovirus, human metapneumovirus) and the decision
to embark on treatment with oseltamivir for suspected
influenza should take into account the knowledge
regarding circulation of viruses in the community and
the patient’s clinical appearance.
3. A policy outlining the pediatrician approach to
immunization of adult household members will soon
be circulated and emphasis will be placed on providing
Tdap and influenza vaccine for parents.
4. Almost ready for prime time are new guidelines which
address the diagnosis and management of otitis media
and sinusitis in children. Amoxicillin will remain the
drug of choice in most cases and both outline the role for
watchful waiting.
5. Given the low vaccine coverage rates for HPV vaccine,
clinicians may want to modify their patient/parent
10 Peds Lines
Spring/Summer 2012
educational approach. The overall tenets related to HPV
vaccine should put emphasis on the following four
The vaccine is recommended for both girls and boys at
11-12 years of age (as early as 9 years for girls).
This is the second vaccine that is effective in preventing
cancer (the first: hepatitis B vaccine).
The vaccine is safe but be aware that fainting occurs
following this and other adolescent vaccines. Ask if the
patient has fainted in the past and have all patients lie
down for 15 minutes before office discharge.
The immunologic response for those between 9-12 years
of age appears to be most robust in this age group and
this correlates with protection.
6. The use of Tdap in underimmunized children between 7
through age 10 years has been spelled out. For those who
need to have any catch up tetanus containing vaccines in
this age group, Tdap should be given as one of the doses
(with completion of any other doses necessary using
Td). Pediatricians should also be working with our OB
and family medicine colleagues who care for pregnant
women, emphasizing the use of Tdap in the late second
or optimally the third trimester of pregnancy for those
who have not previously received vaccine.
7. Measles vaccine for immunization of internationally
traveling children is important as it is estimated that
~50% of measles cases in the US occur in US residents
returning from international travel. Children 6 through
11 months should have a single dose of MMR and those
12 months and older should have 2 doses a month apart.
Mary Anne Jackson, MD, board
certified in Pediatrics and Pediatric
Infectious Diseases, is a faculty
member at Children’s Mercy Hospital
& Clinics. She currently is the medical
editor for the infectious diseases
subboard for the American Board of
Pediatrics and she is a member of the
AAP Committee on Infectious Diseases
(Red Book Committee).
AAP Reports
AAP Committee on Drugs Report
By Tim Johnson, MD
The AAP Committee on Drugs (COD) has been
busy over the past year. The Committee is made up
of board-appointed Fellows and liaison members
from multiple organizations such as the FDA, the
Canadian Paediatric Society, the National Institutes
of Health and the Centers for Disease Control. We
meet in person twice yearly and by phone throughout
the year. Two physicians from the Kansas City area,
myself and Dr. Kathleen Neville, are appointed
Committee members.
At our fall meeting, we took some time to have
an open discussion with Dr. Steven Spielberg, the
new Deputy Commissioner in charge of Medical
Products and Tobacco for the FDA. Dr. Spielberg
is a longtime AAP member and a previous COD
committee member. With regard to drug shortages,
Dr. Spielberg acknowledged the complexity of
the issue which is confounded by several factors:
market contraction (i.e. fewer companies making
IV injectables), antiquated facilities and compliance
issues, sole source manufacturers, the lack of
therapeutic alternatives, a catastrophic event, limited
profitability of generic medications, etc. He noted
that there is a concerted effort within the agency to
work with companies to identify solutions but the
prospect of a near term resolution appears unlikely.
Of note, 80% of active pharmaceutical ingredients
(APIs) come from outside the U.S. which can also
factor into a shortage. Dr Spielberg commented that
the recent Executive Order signed by the President
will require companies to provide adequate advanced
notice of manufacturing discontinuances that could
lead to shortages of drugs that are life-sustaining or
life supporting. Much more action is expected on
this topic in the coming year.
Another priority for the COD and the AAP is
the reauthorization of BPCA and PREA and removal
of the sunset provision. The Best Pharmaceuticals
for Children Act (BPCA) and the Pediatric Research
Equity Act (PREA) are two laws that encourage and
require the study of drugs in children. PREA requires
drug companies to study adult drug indications
in children when the product is likely to be used
in a significant number of children or represents
a meaningful therapeutic benefit over existing
therapies. BPCA is an incentive for drug companies
to conduct FDA-requested pediatric studies,
especially for off-label drug uses, in return for an
additional six months of marketing exclusivity. The total
number of studies completed under BPCA and PREA
now stands at 346, resulting in 424 labeling changes as
of September 2011. This represents a major shift in
testing and labeling medications for use in children that
would not have happened without these bills.
The COD continues to engage the FDA at multiple
levels to reduce preventable harms from medicines.
As an example, the COD Chair testified before an
FDA advisory committee on the use of acetaminophen
in young children. AAP recommended that dosing
information for acetaminophen be added down to six
months of age, that weight-based dosing instructions
be added to the label, and that steps be taken to reduce
accidental ingestion, such as the addition of flow
restrictors and syringes with standard packaging. The
COD is also working with the AAP Council on Clinical
Information Technology and the FDA to ensure that all
electronic prescriptions contain a weight and dose liquid
medications by volume in milliliters instead of teaspoons
or tablespoons.
One of the main objectives for the COD in the
coming year will be to review and comment on the FDA
amended monograph for pediatric dosing of cough, cold,
allergy, bronchodilator, and antiasthmatic OTC drugs.
Based on the recent meeting with FDA Commissioner
Hamburg, cough and cold products are the agency’s top
priority for monograph revision. The COD is concerned
about the safety and efficacy of these medications in
children and will follow the issue closely.
Tim Johnson is Medical Director for the Children’s Mercy
Pediatric Care Network and a practicing Pediatric Emergency
Medicine physician. He is a member
of the Committee on Drugs and an
Executive Committee Member for
the Council on Clinical Information
Technology for the AAP. He is
board certified in general pediatrics,
internal medicine and pediatric
emergency medicine.
Anyone interested in learning
more about the activities of the
Committee on Drugs is welcome to
contact me at [email protected]
Spring/Summer 2012
Peds Lines 11
AAP Reports
AAP Committee on Pediatric Emergency Medicine Report
By Gregory P. Conners, MD
It has been a pleasure to represent my pediatric
colleagues as a voting member of the AAP Committee
on Pediatric Emergency Medicine (CoPEM) for the past
year and a half. This is my first involvement with an
AAP national committee, and I am grateful to have been
given the opportunity.
The AAP features two Pediatric Emergency
Medicine organizations, CoPEM and the Section on
Emergency Medicine. The Section, of which I am also
a member, has hundreds of emergency pediatricians and
others with relevant interest as members, and focuses
on education and research to enhance emergency care of
The past chair of the Section is Dr. Laura
Fitzmaurice, also of Children’s Mercy Hospital in
Kansas City. CoPEM, which has only ten members
from across the country, is more focused on creating or
collaborating on policy statements, technical reports,
and the like, from the AAP or other professional
organizations, regarding emergency care of children
and related issues. CoPEM also has several non-voting
liaisons from related organizations, such as the American
Academy of Family Physicians, the Emergency Nurses
Association, various EMS representatives, the American
College of Emergency Physicians, the American College
of Surgeons, and other AAP sections. The chair of the
Section also meets regularly with CoPEM.
We also have a wonderful AAP staff representative,
Sue Tellez. CoPEM meets quarterly, alternating
between in-person meetings and conference calls, with
substantial additional interactions between meetings.
The members of CoPEM have been taking our
group in wonderful new directions. Our current “Top 5
Objectives” are: implementing Pediatric ED guidelines
to help standardize pediatric care for children across
the country, addressing patient safety and quality issues,
disaster preparedness and response, addressing pediatric
mental health issues as they affect children seeking
emergency care, and improving the patient- and familycenteredness of pediatric emergency care.
We are also encouraging appropriate research into
these and other important areas. Since I have joined
CoPEM, we have released three exciting reports/
statements as official AAP policy: “Technical report:
pediatric and adolescent mental health emergencies
in the emergency medical services system;” “Policy
statement: consent for emergency medical services
for children and adolescents,” and “Technical report:
Dispensing medications at the hospital upon discharge
from an emergency department.”
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Spring/Summer 2012
I have personally been primarily in the creation
of three CoPEM official statements, all of which, if
approved by AAP leadership, will be also published in
Pediatrics as official AAP policy.
First and foremost has been collaboration with the
AAP’s Committee on Hospital Care to create a technical
report describing Pediatric Observation Units, which are
a growing facet of pediatric care in the United States.
I have also begun working on an update of the AAP’s
current policy statement regarding freestanding urgent
care centers. Finally, I am representing CoPEM as
part of a multi-specialty coalition drafting a statement
regarding pediatric emergency physicians’ use of bedside
diagnostic ultrasound. I have also served as CoPEM’s
reviewer for other statements that we have been asked to
Along with having the opportunity to be part of
shaping AAP policies and those of related professional
organizations to improve the health of sick and injured
children, a real privilege of serving on CoPEM is
working with and getting to know passionate, engaged
colleagues who are the current and future leaders in our
I am grateful for both of these aspects, and look
forward to representing you as we continue CoPEM’s
important work.
Gregory P. Conners, MD, MPH, MBA, FACEP, FAAP is
board-certified in Pediatrics and Pediatric Emergency
Medicine. He is Chief of the Division of Emergency
and Urgent Care at Children’s
Mercy Hospital in Kansas City,
where he is also Vice Chair of
Pediatrics for Emergency and
Urgent Care, and Associate
Chair of Pediatrics for Clinical
and Regional Programs. He is
Professor of Pediatrics and
Emergency Medicine at the
University of Missouri – Kansas
City School of Medicine, and an
Associate Editor of Academic
Emergency Medicine.
AAP Reports
AAP Resident Report
By Maya Moody, MD
At the 2011 AAP National Conference and Exhibition in
Boston, I was elected by the Missouri program delegates to be
the resident representative to the Missouri Chapter of the AAP.
Some of my responsibilities for this position include attending
chapter meetings, informing residents of the chapter’s activities,
and serving as a liaison between chapter leadership and the
residents. In November, I had the opportunity to attend the
Missouri AAP Board of Directors meeting. During the meeting,
I learned of several opportunities for residents to become
involved in the Chapter. These include a future Resident/Medical
Student Advocacy Clerkship with the Missouri State Medical
Association, the newly forming Young Physicians Chapter
Committee, available Community Access to Child Health grants,
and the Annual Advocacy Day in Jefferson City on March
7. I have been in contact with each of the Missouri program
delegates to extend these exciting opportunities to the residents
in their program.
Also, every year the national Section on Medical Students,
Residents, and Fellowship Trainees (SOMSRFT) has an
advocacy campaign. The 2011-2012 advocacy campaign is “I care
for kids and I VOTE!” Each program delegate received a
customizable PowerPoint presentation and guidelines for
involving residents in advocacy. Please allow time for your
program delegates to give this short presentation during
resident or department meeting times.
The MO Chapter has a couple of exciting events
coming up – the Chapter welcomes and encourages
residents to attend! The first was the Annual Advocacy
Day in Jefferson City on March 7. This was an excellent
opportunity to discuss important issues for the healthcare
of Missouri’s children with members of the Missouri
legislature. The second was a fun social event with both
Missouri and Kansas Young Physicians on March 28 at
Broadway Brewery in Kansas City. Many mingled with
fellow Young Physicians and
the Kansas AAP and Missouri
AAP Chapter leadership.
I am honored to serve as
your resident representative
to the Missouri Chapter.
I encourage the residents
to become involved in the
Chapter’s activities; there
are great opportunities for
networking and leadership
Support the
Trust Fund
The Children’s Trust Fund
(CTF), in collaboration
with the Bureau of Genetics and Healthy Childhood, has
developed a new educational video for expecting or
new parents. The DVD has chapters in English, Spanish,
and English close-captioned titled, “Never Shake a Baby/
Preventing Shaken Baby Syndrome,” and “Safe Sleep for
Your Baby.” The DVD meets the qualifications of 191.748
RSMo, which requires all new mothers have an opportunity
to view a video on the dangers of shaken baby syndrome
before the mother’s discharge from the healthcare facility
after delivery. In addition, the DVD has a chapter specific
for healthcare providers on the pathophysiology of Shaken
Baby Syndrome by Dr. Mary Case, Chief Medical Examiner
of St. Louis County. The DVDs are available free-of-charge
through the CTF website at and can be
shown to parents by healthcare providers, home visitors,
and parent educators.
Please feel free to contact me with any questions or
concerns - [email protected]
Spring/Summer 2012
Peds Lines 13
Do Your Families Know About Text4Baby?
Since February 2010, pregnant women and new moms have been receiving information to help them care
for their health and give their babies the best possible start in life. This has been made possible by text4baby – a free text messaging service that sends 3 health messages to these women each week from pregnancy
until the baby is 12 months old. Women can sign up for the free service by texting BABY to 511411(or
BEBE for Spanish), and it’s even timed to their due date or baby’s date of birth.
The American Academy of Pediatrics was a key content reviewer of the text messages and encourages AAP
chapters and their members to promote text4baby in their pediatric practice. These messages focus on a
variety of topics critical to maternal and child health: immunizations, nutrition, seasonal flu, mental health,
oral health, safe sleep, and more. Text4baby also connects women to health services through the inclusion
of national hotline phone numbers within the messages.
Sample text4baby messages include:
Need free or low-cost health care for you & your baby? Your state has programs to help. Call 877-543-7669 to find out if you qualify.
Talk to your Dr. about getting a flu shot. Pregnant moms & babies can get very sick from flu. For info call CDC at 800-232-4636.
Did you get info from your Dr. on newborn screening tests? If not, ask for it. Your baby will have these tests in the first 48 hours after birth.
You are a critical partner in getting families enrolled in text4baby. Given the limited time available for pediatricians to discuss every health promotion
topic, text4baby is an important tool to engage and reinforce this critical health information.
Help spread the word about text4baby to the families you see in your practice. Please see below for a script that can be used to describe text4baby.
If you’re pregnant or a new mom, there is a new free service called text4baby that can help keep you and your baby healthy.
Text4baby will send 3 text messages each week to your cell phone with expert health tips to help you through your pregnancy and your baby’s first year. It’s free
to sign up and the messages are free.
To sign up, text BABY to 511411. To sign up for text4baby in Spanish, text BEBE to 511411.
You can also sign up and find more at
Text4baby is an educational service of the National Healthy Mothers, Healthy Babies Coalition.
Other ways to promote text4baby:
• Put up text4baby posters in your waiting areas and exam rooms. (Print Out | Order)
• Place text4baby tear-off pads next to your check-in/check-out desks and encourage moms to take a sheet.
• Promote text4baby via your practice’s Facebook or Twitter account.
• Add a text4baby banner or button to your practice’s Web site (email AAP staff at [email protected] to obtain graphics)
• Add a text4baby reminder prompt into your electronic health record
For more information, visit the text4baby Web site at . How have you promoted text4baby? E-mail AAP staff at [email protected]
org to let us know how you have/plan to promote text4baby in your practice or community!
14 Peds Lines
Spring/Summer 2012
Spring/Summer 2012
Peds Lines 15
Pediatric Medicine
Pulse Oximetry Screening
By Bill Drake, MD & John Wagner, DO
In September 2011 the Secretary of Human and Health
Services, Kathleen Sebelius, recommended that pulse oximetry
screening (POS) for CCHD (Critical Congenital Heart
Disease) be added to the uniform screening panel. The American
Academy of Pediatrics (AAP) is a strong advocate of early
detection of CCHD and fully supports the decision of the
Secretary of HHS1.
CCHD is considered to be any congenital heart defect
requiring surgical or catheter based intervention in the first
month of life. This adds up to about 1 in 1,000 live births yearly2.
While CCHD can include cyanotic and acyanotic left heart
obstructive lesions, newborn pulse oximetry screening is best
at recognizing cyanotic lesions including hypoplastic left heart
syndrome, pulmonary atresia, tetralogy of Fallot, total anomalous
pulmonary venous return, D-transposition of the great arteries,
tricuspid atresia and truncus arteriosus, comprising one-sixth to
one-third of all congenital heart disease. Other defects can be
recognized as well, including coarctation of the aorta, interrupted
aortic arch, and aortic arch atresia and hypoplasia.
Overt cyanosis on physical exam is surprisingly difficult
to recognize in newborns. Because of the high oxygen affinity
of fetal hemoglobin, newborns may not show central cyanosis
until the PaO2 drops below 40 mmHg. Practically speaking,
this means that newborns may not appear cyanotic until their
saturations drop well below 90%.
When the ductus arteriosus closes, some CCHD babies
suffer cardiovascular collapse after discharge from the newborn
nursery, leading to significant morbidity and mortality2, 3,
including severe neurological damage4. If available, it makes sense
that a simple, cost effective screening tool should be used, and
Pulse Oximetry Screening (POS) of newborns fits the bill.
Within the last three years, three large prospective trials
from Sweden, Germany, and the United Kingdom show the
sensitivity of POS to be 65-75% with a low false positive rate
of 0.17-0.8%5-7. When POS is combined with the newborn
physical exam the false negative rate of screening is extremely
low compared to those who did not get POS8. Subsequently,
the Secretary’s Advisory Committee on Heritable Disorders in
Newborns and Children (SACHDNC) recommended that POS
be added to universal newborn screening. The AAP and the
CCHD Work Group convened and developed implementation
strategies and POS standards. These were published in a
November, 2011 issue of Pediatrics9.
The next challenge is to implement POS into everyday
practice. POS will need to be performed at a variety of
institutions and locations delivering care for infants. The
actual screening protocol is relatively straightforward9, and is
summarized by the flow chart shown in Figure 1.
The result of the screen will either be ‘positive’ (cyanotic) or
‘negative’ (acyanotic). For a positive screen, additional evaluation
16 Peds Lines
Spring/Summer 2012
with a transthoracic echocardiogram is indicated. The challenge
for each facility and practitioner caring for newborns in the
state will be to prospectively discern how best to obtain an
echocardiograms for newborns arriving with a failed POS.
From Figure 1, the POS can be failed by either a single
reading of less than 90%, or by three consecutive readings in the
range of 90-<95%. Ten studies totaling 123,846 infants screened
reported a mean false positive of 0.87%, but the rate fell to
0.035% when screening was done after 24 hours.
Facilities in rural areas or those not having expedient access
to a pediatric cardiologist may need to consider implementing
telemedicine echocardiography to provide adequate evaluation
for a positive screened newborn. Another option for newborns
with suspected CCHD is transport to a tertiary center for these
services. It will be up to the transferring and receiving facilities
to discuss the role of staring prostaglandin E1 (PGE1) prior to
transport, but certainly the transporting team should be able to
initiate a PGE1 infusion during transport if needed. This will
require infrastructure changes including having PGE1 available
for delivering hospitals and newborn transport services.
There is no doubt that POS of newborns can save a lives in
Missouri every year. Barriers to overcome in implementation
include education, organization, and infrastructure. Surmounting
the barriers will require time and commitment from health care
providers and facilities that care for newborn infants.
The evidence is now clear. Pulse oximetry screening is a low
cost, effective, easy to perform, sensitive and relatively specific test
for recognizing critical congenital heart disease. While no test is
perfect, POS will allow us to become much better at recognizing
those infants at risk for significant illness or death when the
ductus arteriosus closes.
Resources and information will be increasingly available
for practitioners and delivery centers to review as POS is
implemented across Missouri and the United States.
EXECUTIVE COMMITTEE, William T. Mahle, Gerard R. Martin, Robert
H. Beekman III, W. Robert Morrow, Geoffrey L. Rosenthal, Christopher
S. Snyder, L. LuAnn Minich, Seema Mital, Jeffrey A. Towbin and James S.
Tweddell. Endorsement of Health and Human Services Recommendation for
Pulse Oximetry Screening for Critical Congenital Heart Disease. Pediatrics
2. Wren, C. et al “Twenty-year trends in diagnosis of life-threatening
neonatal cardiovascular malformations.” Arch Dis Child Fetal Neonatal Ed. 2008
Jan;93(1):F33-5. Epub 2007 Jun 7.
3. Brown, K. et al “Delayed diagnosis of congenital heart disease
worsens preoperative condition and outcome of surgery in neonates.” Heart.
Pediatric Medicine
Figure 1. Pulse Oximetry Screening (POS) flow chart. This protocol should ideally be used in asymptomatic, otherwise
healthy newborn infants between 24 and 48 hours of age. RH = Right Hand, F = Either Foot.
4. Pryds, O. et al. “Vasoparalysis associated with brain damage in
asphyxiated term infants.” J Pediatr. 1990; 117(pt. 1):119-125.
5. Mahle, W. et al “Role of pulse oximetry in examining newborns
for congenital heart disease: a scientific statement from the AHA and AAP.”
Pediatrics. 2009 Aug;124(2):823-36. Epub 2009 Jul 6.
6. De Wahl-Granelli , A. “Impact of pulse oximetry screening on the
detection of duct dependent congenital heart disease: a Swedish prospective
screening study in 39,821 newborns. BMJ. 2009 Jan 8;338:a3037. doi: 10.1136/
7. Riede, F. et al “Effectivevness of neonatal pulse oximetry screening for
detection of critical congenital heart disease in daily clinical routine--results from
a prospective multicenter study.” Eur J Pediatr. 2010 Aug;169(8):975-81. Epub
2010 Mar 1.
8. Ewer , A. et al “Pulse oximetry screening for congenital heart
defects in newborn infants (PulseOx): a test accuracy study.” Lancet. 2011 Aug
27;378(9793):785-94. Epub 2011 Aug 4.
9. Kemper, A. et al “Strategies for implementing screening for critical
congenital heart disease.” Pediatrics. 2011
Nov;128(5):e1259-67. Epub 2011 Oct 10.
Bill Drake,MD, is a Pediatric
Cardiologist at Children’s Mercy
Hospital in Kansas City. He is the
Chairman of the Missouri AAP
Chapter’s Screening Pulse Oximetry
of Newborns (SPOON) Committee.
John Wagner, DO, is a Fellow,
Pediatric Cardiology, Children’s
Mercy Hospitals and Clinics.
Spring/Summer 2012
Peds Lines 17
Pediatric Medicine
Home Health Care & Primary Care
Components of the Medical Home
By Douglas M. McNeal, MD, FAAP
Recently, I heard the testimonial of a young mother on the
virtues of a personal care aide for her child with special needs. Her
child had multiple disabilities and had been admitted numerous
times to a children’s hospital. It was not until the child was fiveyears-old that someone (another mother) suggested this family
might qualify for home health assistance.
I am newly retired from a pediatric practice with an emphasis
on children with special health care needs. The opportunity to be
a medical consultant to a home health care agency that provides
service to 180 children in the state prompted my interest in the
above story. The more I learned, the more aware I became of my
failure to address this need in my own practice.
Apparently, I am not alone. Children with disabilities covered
by Medicaid through the HCY (Healthy Children and Youth)
program may be eligible for services through the Bureau of Special
Health Care Needs. The MO HealthNet Personal Care Manual
states that “…historically the service has been utilized by few
children.” [section 13.10] . Children not eligible through HCY may
be covered by the family’s private insurance. In discussions with
state agencies and home health services very few referrals come from
physicians. I confess that at times I was assuming that someone else
was making the appropriate referral, i.e. social worker, hospital, etc.
Obviously, that is not the case.
Home health care services can be administered in the form of a
personal care aide or skilled nursing (LPN or RN).
I. Personal Care Aide
A. An aide is placed in the home to assist with the following, because of a medical condition.
1. dressing and grooming
2. bathing and personal hygiene
3. toileting and continence
4. ostomy and catheter hygiene
B. The presence of a parent or other caretaker does not preclude eligibility for personal care. If a parent must be gone from the home when the personal care is
needed, a personal care aide may deliver the service while
the parent is absent, as long as the child has a medical
need for the service.
C. Eligibility is determined by medical necessity. The
following are listed as examples by MO HealthNet
(Medicaid) [section 13:10B Medical Criteria]:
1. poorly controlled seizures (other than
grand mal seizures)
2. assistance with orthotic bracing, body casts
3. incontinence of bowel and/or bladder after age
three (chronic bedwetting and encopresis excluded)
4. significant CNS damage affecting motor
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Spring/Summer 2012
5. assistance with age-appropriate activities of
daily living (children with a diagnosis of
developmental delay or mental retardation may
be eligible for personal care, if their ability to
perform age-appropriate personal care is impaired)
D. Referrals to the Bureau of Special Health Care Needs (BSHCN) can be made by physicians, hospitals or
families who are Medicaid eligible. If not Medicaid
eligible, a family can contact their third-party payer to
determine policy benefits.
Regional Bureau offices are listed below:
Springfield 417-895-6905
Kansas City 816-350-5433
Columbia 573-882-9861
Cape Girardeau 573-290-5830
St. Louis 314-877-2850
II. Skilled Nursing
A. An LPN or RN is placed in the home to assist with
medically complex individuals who may require assistance with the following.
2. gastrostomy feeding
3. wound care
4. tracheostomy care
B. A parent or caretaker can be present in the home.
C. The same referral process is followed as above.
Respite care is not included under either category. Care must
include direct hands-on assistance. The stress of caring for a child
with a disability is evident to all of us who care for these families.
The ability to assist them with home-based care is essential. I would
encourage the reader to pursue with families a referral to either
BSHCN or to their third-party payer. They will be grateful.
1. MO HealthNet Private Duty Nursing Manual online at http://manuals . Duty_ Nursing_ section13.pdf
2. MO HealthNet Personal Care Manual online at http://manuals momed.
Douglas McNeal, MD, is board certified
in Pediatrics and Neurodevelopmental
Disabilities, and is currently a pediatric
consultant for Integrity Home Care. As a
developmental pediatrician he has served
on national committees for both the
American Academy of Pediatrics and the
American Academy of Cerebral Palsy and
Developmental Medicine.
Pediatric Medicine
“I’ve Heard Some Things That Scare Me”
Responding With Empathy
to Parents’ Fears of Vaccinations
by Kenneth Haller, MD & Anthony Scalzo, MD
of “Ileal-lymphoidnodular hyperplasia, nonspecific colitis, and pervasive
developmental disorder in
children” by Andrew Wakefield,
et. al., positing a causal relationship
between MMR vaccine and autism in
children, set off a media storm and galvanized
the anti-vaccine movement. In this paper,
centuries-old fears of vaccination and the history of
autism as a medical diagnosis are considered, and an
affective, family-centered approach to dealing with
parental fears by physicians is proposed.
A three-month-old girl was admitted onto the
pediatric clinic medicine service of a universityaffiliated children’s hospital in the winter of 2008
with a three to four day history of worsening cough
and fever leading to decreased oral intake. She had
been brought to the emergency room by her parents
and was observed to have paroxysms of cough and
had a SpO2 on room air which would drop into
the 70s during these episodes. Family history was
significant for a teenage brother who had suffered
a recent persistent cough for a few weeks but had
experienced no fever. Despite her age, the baby had
not received any immunizations on the advice of the
family’s chiropractor. The family also said that they
had “read some stuff on the Internet about shots and
autism,” and they felt the baby would be better off not
getting immunizations than “taking a chance” that
vaccines might harm her. The baby’s nasopharyngeal
swab was positive for pertussis, as was her follow-up
culture. She required oxygen by nasal cannula for five
days and was sent home after she was weaned to room
air. The parents were counseled that the baby would
likely still have a cough for many weeks to come.
This was one of three pertussis cases seen by
the clinic medicine attending during one month on
inpatient service, the first time in his career that he
had seen more than one patient admitted for pertussis
within a month.
On the Rise
Kenneth Haller, MD, FAAP, MSMA member since 2004, is Associate
Professor of Pediatrics. Anthony J. Scalzo, MD, FAAP, FACMT, FAACT,
is Professor of Pediatrics, Director, Division of Toxicology and Medical
Director, Missouri Poison Center. Both are at Saint Louis University School
of Medicine/SSM Cardinal Glennon Children’s Medical Center.
Contact: [email protected]
He was not alone. In 2008, in the state of
Missouri, there were 561 cases of pertussis reported
to the Missouri Department of Health and Senior
Services. Pertussis had been on the decline for the
previous two years (308 cases in 2006, and 118 in
2007). The 561 Missouri pertussis cases represented
an 82% increase over the five-year median of 308
Reprinted with permission. Copyright Missouri Medicine Jan/Feb 2012
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cases. In addition, the number of reported pertussis
outbreaks in Missouri also increased in 2008, from
two reported in 2007 to 11 in 2008. 1
Elsewhere, things have been even worse. In
2010, 9,120 cases of pertussis were reported to the
California Department of Public Health for a state
rate of 23.3 cases/100,000. This is the most cases
reported in California in 63 years, when 9,394 cases
were reported in 1947, and the highest incidence
in 52 years, when a rate of 26.0 cases/100,000 was
reported in 1958. Of the 9,120 cases, 804 (9%) were
hospitalized. Four hundred and forty-two (55%) of
hospitalized cases were infants <3 months of age, and
581 (72%) were infants <6 months of age. Ten deaths
were reported. Nine fatalities were infants <2 months
of age at time of disease onset who had not received
any doses of pertussis-containing vaccine. The tenth
infant was an ex-28-week preemie who was two
months of age and had received the first dose of DTaP
only 15 days prior to disease onset (California DOPH
Unfortunately, pertussis is not the only vaccinepreventable disease to be enjoying a resurgence.
Nationally, the reported incidence of invasive
Haemophilus influenzae disease has more than doubled
from 0.48 cases/100,000 to 0.99/100,000 between
1999 and 2009, and the number of reported cases
(all ages, serotypes) rose from 1,174 to 1,597 cases
between 1994 and 2001. 2
Furthermore, measles, which had been eliminated
(defined by the Centers for Disease Control and
Prevention as the absence of endemic transmission) in
the United States in the late 1990s and likely in the
rest of the Americas since the early 2000s, had 118
cases reported in the United States during the first
19 weeks of 2011, the highest number of reported
measles cases for this period since 1996. (During
2001-2008, a median of 56 measles cases were
reported to the CDC annually.) Of the 118 cases, 105
(89%) were associated with importation from other
countries, and 105 (89%) patients were unvaccinated.
Forty-seven (40%) patients were hospitalized, and
nine had pneumonia. The largest outbreak occurred
among 21 persons in a Minnesota population in which
many children were unvaccinated because of parental
concerns about the safety of measles, mumps, and
rubella (MMR) vaccine. That outbreak resulted in
exposure to many persons and infection of at least
seven infants too young to receive MMR vaccine. 3
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Spring/Summer 2012
In August 2005, a five-year-old boy with
autism died in a physician’s office while receiving
IV chelation therapy with Na 2EDTA instead of
CaNa 2EDTA. The medical examiner report listed
the cause of death as “diffuse, acute cerebral hypoxicischemic injury, secondary to diffuse subendocardial
necrosis” likely due to the severe hypocalcemia. The
case was investigated by the Pennsylvania State
Board of Medicine (MMWR March 3, 2006), and
it was clear that the hypocalcemia resulted from the
inappropriate use of Na 2EDTA. 4
So what is going on? Why is childhood
vaccination, which has reduced morbidity and
mortality by margins unimaginable a century ago,
being rejected by so many parents, and how have
physicians and public health professionals failed
to make the case for immunization? The purpose
of this paper is to examine some of these issues
around vaccination and how we, as medical and
public health professionals, can more effectively and
compassionately respond to parental concerns, both
in the public sphere and in our one-to-one office
The Unnatural Act of Vaccination
While it is easy to view Andrew Wakefield’s 1998
paper, “Ileal-lymphoid-nodular hyperplasia, nonspecific colitis, and pervasive developmental disorder
in children,” in The Lancet 5 as the cause of the modern
anti-vaccine movement, it may more accurately be
viewed as giving already skeptical parents a “scientific”
excuse to indulge in popular and centuries-old
misgivings about the very idea of vaccination in the
public mind.
In his essential 2011 book, The Panic Virus,
journalist Seth Mnookin, writes, “it’s remarkable how
static the makeup, rhetoric, and tactics of vaccine
opponents have remained over the past 150 years.
Then, as now, anti-vaccination forces fed on anxiety
about the individual’s fate in industrialized societies;
then, as now, they appealed to knee-jerk populism
by conjuring up an imaginary elite with an insatiable
hunger for control; then, as now, they preached the
superiority of subjective beliefs over objective proofs,
of knowledge acquired by personal experience rather
than through scientific rigor.” 6
Happily, the fact that vaccines have been
spectacularly successful at drastically reducing the
incidence of diseases like measles, polio, and pertussis,
Pediatric Medicine
has meant that generations of parents have grown
up without the specter of childhood death due to
infectious disease. In the eighteenth century, before
Jenner developed the cowpox-based vaccine for
smallpox, the deadliest and most feared disease of
the time, smallpox inoculation was introduced to
Europe, probably from China, and involved lancing
open a wound in the skin of an uninfected person
and implanting scabs or fresh pus from a smallpox
sufferer into these wounds. The inoculated person
would usually develop a milder form of the disease
and develop lifelong immunity, but death after
inoculation was not uncommon. In March 1730,
Benjamin Franklin reported in his newspaper, The
Pennsylvania Gazette, that, of 72 Bostonians recently
inoculated with smallpox, only two died while “the
rest have recovered perfect health… Of those who
had [smallpox] in the common way, ’tis computed
that one in four died.” These inoculation-associated
deaths would be acceptable to a populace sadly and
intimately familiar with a deadly disease, but in a
society where these diseases have become relatively
uncommon – and where, in fact, a large percentage
of doctors have not even seen actual cases of many
vaccine-preventable infectious diseases – parents
may reasonably feel that delaying or even refusing
vaccination for their children makes sense. Vaccines
may very well be victims of their own success.
Yet even when the public does know the ravages
of disease, unease about inoculation and vaccination
is not uncommon. Because inoculation with smallpox
did sometimes lead to death, it was railed against as an
affront to the Sixth Commandment, “Thou shalt not
kill.” And in 1802, a political cartoon was published
showing people developing horns and hooves as a
result of receiving Edward Jenner’s cowpox-derived
Unfortunately, in the history of immunization
– and of medicine in general – there are myriad
examples of morbidity and mortality resulting from
vaccination and scientific experimentation that have
been passed down to parents already uneasy about the
idea of subjecting their children to multiple painful
In the fall of 1901, for example, 13 schoolchildren
in St. Louis, Missouri, died of tetanus after they were
treated with the diphtheria antitoxin. This occurred
almost simultaneously with the deaths of nine
schoolchildren in Camden, New Jersey, which were
associated with a commercial vaccine allegedly tainted
with tetanus. These deaths led Congress to enact the
Biologics Control Act of 1902, establishing the first
federal regulation of the vaccine industry, but the
damage had already been done in the public mind. 7
In early 1976 the Ford administration spearheaded
a crash vaccine program when it was feared that a
strain of flu similar to the 1918 pandemic strain would
be appearing the following flu season. This became
known in the press as Swine Flu, and the government
rolled out its vaccine on October 1. While no one
became sick with the feared strain of flu, by the end of
November over 500 of 40,000,000 vaccine recipients
had developed Guillan-Barre Syndrome, a rate seven
times greater than expected for the population.
Though alarming, these numbers did not reach a
level of statistical significance and causality was never
established. Nevertheless, in a hail of negative press,
the program was halted on December 16, 1976. 6
Meanwhile, in the mid- to late-1970s concerns
were being raised about pertussis vaccine, particularly
about purported neurological problems suffered by
children after receiving the vaccine. While doctors
were aware that children frequently had high fevers,
febrile seizures, and extreme irritability after receiving
the diphtheria-pertussis-tetanus (DPT) vaccine, there
had never been any evidence that the vaccine caused
any long-term sequelae. Nevertheless, the press began
to pick up on this fear, and a turning point came
with the airing of a television special called, “DPT:
Vaccine Roulette,” in 1982. The program, originally
shown locally in Washington, DC, but picked up by
stations throughout the US, became a rallying cry
for burgeoning anti-vaccine forces with its heartwrenching depictions of children suffering from brain
damage, seizures, and mental retardation, purportedly
as a result of receiving DPT vaccine.
In late 1998 and into 1999, a provision of the
Food and Drug Administration (FDA) Modernization
Act of 1997 which required a federal report on levels
of mercury in drugs and food was approaching the end
of its two-year reporting timeframe. Thiomerosal, an
ethylmercury compound that had been approved for
use as an anticontaminant in vaccines in the 1940s,
came under scrutiny. From a toxicology perspective
mercury has long held a position of prominence as
a heavy metal toxicant. The environmental disaster
of Minamata Bay, Japan, in the 1950s, resulted from
the release of highly toxic methyl mercury into
Spring/Summer 2012
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Minamata Bay in Kumamato Prefecture, and images
of neurodevastated children in Life magazine loomed
large in the public imagination for decades.
Beyond general misgivings about vaccination,
specific populations also feel they have reason to
mistrust the medical profession. In particular, the
notorious Tuskegee syphilis experiments stand out
in the consciousness of the African-American and
contributed to some mothers’ worries about vaccine
safety. According to one mother: “[Tuskegee] always
sticks in my mind. That you really don’t know what’s
happening and here these people were guinea pigs and
just don’t want my children to be part of that.” 9
Autism, Parents, the DSM, and Doctors
Though child psychiatrist Leo Kanner first
coined the term “Autism” in his 1943 paper “Autistic
disturbances of affective conduct,” in which he
described children with an inability to form normal
human attachments, an extreme lack of empathy, and a
tendency to get unnaturally absorbed in routine tasks,
it wasn’t until his 1949 paper, “Problems of nosology
and psychodynamics in early childhood autism,”
that he discussed his observations of the parents
of autistic children. He observed that “aside from
the indisputably high level of intelligence, the vast
majority of the parents of the autistic children have
features in common which it would be impossible to
disregard… Most of the parents declare outright that
they are not comfortable in the company of people...”
Furthermore, “The parents’ behaviour toward the
children must be seen to be believed. Maternal lack
of genuine warmth is often conspicuous in the first
visit to the clinic.” Kanner concludes that the parents
“themselves had been reared sternly in emotional
refrigerators.” 9
In the 1950s Bruno Bettelhiem, whose “status as
a pioneering medical doctor, his academic bona fides,
and his media savvy gave his opinions more weight
than those of Kanner,” 6 took this observation a step
further, from Kanner’s non-judgmental descriptions
which did not imply an etiology for autism, to
the dreaded “refrigerator mothers,” harridans who
emotionally isolated their children and cut them
off from nurturing human contact. 11 According
to his biographer, Richard Pollak, “No prominent
psychotherapist of this time was more antagonistic to
mothers—in private and in public—as [Bettelheim]
was, insisting that they caused autism by rejecting
22 Peds Lines
Spring/Summer 2012
their infants and comparing them to devouring
witches and the SS guards in the concentration
camps.” 12 As ludicrous as this seems from today’s
perspective, “[t]he readiness with which Bettleheim’s
theories were embraced illustrates how what are
thought of as indisputable, evidence-based conclusions
are influenced by prevailing social and cultural
norms.” 6
For decades then, parents, devastated by their
child’s descent into a non-verbal state of repetitive
self-stimulatory activity, desperately seeking answers,
causes, and hope would be met by physicians who,
with the best of intentions, would tell them, “Well, we
don’t know what causes autism, but we think it was
something you did.”
In 1952 the American Psychiatric Association
published the Diagnostic and Statistical Manual of
Mental Disorders (DSM), a compendium of standard
criteria for the classification of mental disorders.
In this first iteration, autism is not mentioned as a
separate diagnosis or syndrome but as a descriptor
under “schizophrenic reaction, childhood type,” which
included “psychotic reactions in children, manifesting
primarily as autism” as one of its symptoms. The
DSM-II, published in 1968, still included autism
only as a symptom under childhood schizophrenia.
“Infantile autism” did not become a free-standing
diagnosis until the publication of the DSM-III in
1980. The definition was expanded in the 1987 DSMIV, which changed the diagnosis to “autistic disorder.”
In 1994 the larger class of “pervasive developmental
disorders” was introduced to include autistic disorder,
along with Rett’s disorder, Asperger’s disorder,
childhood developmental disorder, and pervasive
developmental disorder, not otherwise specified,
(PDD-NOS), and all of which are considered autism
spectrum disorders (ASD).
Over the years, as diagnostic criteria for ASDs
have been both broadened and refined, physicians and
parents have each become more aware of the signs and
symptoms of autistic disorder and related disorders
which have steadily encompassed greater numbers of
children. In 2007 the American Academy of Pediatrics
recommended that pediatricians observe for signs of
autism at every well child visit, and that they perform
screening with the Modified Checklist for Autism in
Toddlers (M-CHAT) at the 18-month and 24-month
well child visits. 13
So in the nearly seven decades since Kanner first
Pediatric Medicine
described autism, doctors are increasingly able to
screen for ASDs earlier and begin to offer parents
at least a glimmer of hope with early intervention
programs. Still, many parents continued to live with
blame, guilt, and isolation, all the while caring for
difficult, frustrating children. These parents needed
someone to give them hope, both that there might
be a way to at least partially restore their children to
health and to give them answers for what went wrong
in the first place. In 1998, they finally found their
savior, and his message was all the more satisfying for
taking the burden of guilt for their child’s autism off
of their shoulders and placing it on those who had
blamed and shamed them for their child’s illness for
so long – their doctors.
Enter Andrew Wakefield
“Rubella virus is associated with autism, and
the combined measles, mumps, and rubella vaccine
(rather than the monovalent measles vaccine) has
also been implicated.” With that sentence in the
discussion section of his paper, “Ileal-lymphoidnodular hyperplasia, non-specific colitis, and pervasive
developmental disorder in children,” in The Lancet, 5
Andrew Wakefield and his 11 co-authors set off a
furor over vaccination that has yet to abate.
The study purported to be a case series which
established a link between the gastrointestinal
difficulties and cognitive and behavioral deficits
of a series of 12 children in the UK. According to
the article, “Onset of behavioural symptoms was
associated, by the parents, with measles, mumps,
and rubella vaccination in eight of the 12 children,
with measles infection in one child, and with otitis
media in another… In these eight children [in whom
the combination MMR vaccine was implicated] the
average onset from exposure to first behavioural
symptoms was 6.3 days (range 1-14).” 5
Seth Mnookin describes the scene at the London
news conference where Wakefield first appeared to
discuss his paper. “Knowing that the paper’s findings
would be controversial from the beginning, the
five experts who addressed the media had agreed
beforehand that regardless of their individual
interpretations, they’d deliver one overarching
message: Further research needed to be done before
any conclusions could be drawn, and in the meantime,
children should continue to receive the MMR vaccine.
Once the tape recorders began to roll, however,
Wakefield went dramatically off script. ‘With the
debate that has been started, I cannot continue to
support the continued use of the three vaccines
together… My concerns are that one more case of this
is too many and that we put children at no greater risk
if we dissociated those vaccines into three…’ ” 6
The study was immediately and widely criticized,
and within months, epidemiological studies were
published that failed to find a link between MMR
vaccine and autism, some of them in the pages of
The Lancet 14,15 Eventually, investigative reports by
journalist Brian Deer in The Times (of London) in
2004 looking at Wakefield’s conflicts of interest in
the 1998 paper led to a retraction by 10 of the 12 coauthors of the paper. According to the retraction, “no
causal link was established between MMR vaccine and
autism as the data were insufficient.” 16
Deer’s work in 2004 as well as in three subsequent
investigative articles in the British Medical Journal 17
showed that:
• Wakefield had been hired in February 1996 at
£150 an hour by a lawyer named Richard Barr
who was working to bring a lawsuit against
vaccine manufacturers.
• Wakefield filed an application for a patent for
a “safer” single measles vaccine in the UK in
June 1997.
• Patients included in the study were actively
recruited from anti-MMR organizations, and
the study was commissioned and funded for
planned litigation.
• A study of the medical records of the 12
children in the study showed that despite
the paper’s claim that all 12 children
were “previously normal,” at least five had
documented pre-existing developmental
• In addition some of the children who were
portrayed as having their first behavioral
concerns within days of MMR vaccination
did not in fact begin having symptoms until
months later.
• Wakefield obtained blood samples for controls
at his child’s birthday party, paying each child
£5 for participating.
Eventually the UK’s General Medical Council
(GMC) engaged in an unprecedented 217-day hearing
between July 2007 and May 2010 on Wakefield’s
fitness to practice. On May 24, 2010, they concluded,
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Pediatric Medicine
“Dr. Wakefield’s misconduct not only collectively
amounts to serious professional misconduct, over
a time frame from 1996 to 1999, but also, when
considered individually, constitutes multiple separate
instances of serious professional misconduct.
Accordingly the Panel finds Dr. Wakefield guilty of
serious professional misconduct,” 18 and Wakefield had
his license to practice medicine in the UK revoked.
Three months earlier, on February 2, 2010, The
Lancet had quietly retracted Wakefield’s 1998 paper. 19
Case closed. One would think. But if anything,
Wakefield’s decredentialing by the scientific and
medical communities has turned him into a martyr,
someone who is willing to give up everything for
what he knows is right, a loner who refuses to be
destroyed by those in power. Soon after the censures
by the GMC, J. B. Handley, co-founder of Generation
Rescue, a group that disputes vaccine safety, said, “To
our community, Andrew Wakefield is Nelson Mandela
and Jesus Christ rolled up into one… He’s a symbol of
how all of us feel.” 20
How did this happen, and why has the medical
community let it happen?
The Power of Narrative
In the fall of 2009 as the CDC and the World
Health Organization were warning of a pandemic
caused by a new H1N1 flu strain, physicians were
being asked, not just by patients but by the media, for
their advice about vaccinating children. Unfortunately,
in early news reports this new flu strain had been
referred to as Swine Flu, and the rapid production
of an H1N1 vaccine brought back uncomfortable
associations with Gerald Ford’s ill-starred vaccination
effort of 1976. The media sought out physicians to
discuss the pros and cons of vaccination. In St. Louis,
a weekly paper called the Ladue News, interviewed
a local pediatrician for his opinion on vaccination.
He was quoted as saying, “I tell parents that there
is absolutely no data to support [a vaccine-autism
link, and failure to vaccinate children is] foolish and
dangerous. Immunization is safe and effective with
minimal minor side effects. There is a small but real
chance of complications, including fatal complications,
with both the chicken pox vaccine, which can lead
to pneumonia, encephalitis and hepatitis, and the
influenza vaccine, which can develop into pneumonia
or other secondary bacterial infections.” 21
And Dr. Paul Offit, an infectious disease specialist
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Spring/Summer 2012
at the Children’s Hospital of Philadelphia, and one
of the developers of a rotavirus vaccine, begins his
book Deadly Choices: How the Anti-Vaccine Movement
Threatens Us All with, “There’s a war going on out
there… On one side are parents… On the other side
are doctors… Caught in the middle are children.” 22
On the other hand, Wakefield says, “What
happens to me doesn’t matter. What happens to
these children does matter.” 20 And Jenny McCarthy,
actress, anti-vaccination stalwart, and president of
Generation Rescue, writes on their website’s home
page, “In profound solidarity with all the families still
struggling, I decided to speak up. I wanted to give
voice to options too often unspoken, and share hope
for victories within reach. My family was given gifts
that I wanted to share. Whether you’re in need at 3:00
p.m. or 3:00 a.m., you have come to the right place.
We are here for you, together resolving our heartaches
and celebrating our victories.” 23
We in the medical community must acknowledge
that, for parents, the idea of allowing their child to be
injected with an agent that might cause harm and will
definitely cause pain is, at the very least, unsettling
to even the most educated, most rational parent.
The genius of the anti-vaccine forces is that they are
passionately empathetic toward parents who want only
to protect their kids – and they are not shy about the
sacrifices that they have personally made in standing
up to uncaring physicians and greedy pharmaceutical
And how do we respond? Often with a wellreasoned, evidence-based argument that dismisses
vaccination concerns as unfounded and uninformed.
If we do express emotion about vaccination, it often
comes across as either as anger at parents who just do
not care enough to do what is best for their children
or annoyance on our part for having to waste our time
with such nonsense.
If You Were a Parent, Who Would You Trust?
As physicians, we do have our own stories and
narratives, and we can use them to counter the fearmongering of the vaccine deniers. We can tell of the
sweat on our brow as we intubated a kid just seconds
before her windpipe was sealed shut by hemophilus
infection, or of the dread in our heart as we saw milky
spinal fluid drip out of a lumbar puncture needle in a
baby with pneumococcal infection, or of the mother
who said she would never forgive herself if her child
Pediatric Medicine
did not live because she listened to her chiropractor
and did not have her baby immunized.
The science is clearly, unequivocally, powerfully on
our side when it comes to the safety and effectiveness
of vaccination, and we must share this information
which is at the core of our efforts to prevent disease in
children. But we have to remember that parents make
decisions about their kids, not from the head, but from
the heart.
In 1710 Jonathan Swift wrote,“Falsehood flies and
the truth comes limping after; so that when men come
to be undeceived, it is too late: the jest is over and the
tale has had its effect.”
As such, we cannot be reticent to use our stories
to let parents know that we do this work, that we
vaccinate children because, as Andrew Wakefield
himself said, “one more case of this is too many.”
But in our case, “this” refers not to a self-serving
fiction, but to pertussis, epiglottitis, and meningitis,
to kids being devastated or killed by diseases that are
completely preventable, to parents facing their fears
with us beside them to give their children a better
Healing is about more than prescribing and
instructing. It is also about listening, about saying that
physicians were wrong to blame parents when we had
no other explanation for autism, and sometimes just
sitting in silence as we let parents know that it is okay
if they are afraid and that we will walk through that
fear with them.
As they were getting ready to go home from the
hospital after five sleepless, nerve-wracking nights,
the mother of the three-month-old girl with pertussis
told the clinic med attending that, if he wanted to tell
people about how sick her daughter was and what she
and their entire family went through to help convince
other parents to vaccinate their kids on time, it might
give some meaning to their ordeal.
“Dr. Haller,” she said, “I don’t ever want any other
family to have to suffer what we went through.”
communicabledisease/annual08/Annual08.pdf, p. 34
2. Summary of Notifiable Diseases - United States, 2009, Weekly, May
13, 2011/58(53);1-100
3. Measles - United States, January-May 20, 2011, Weekly, May 27,
4. Deaths Associated with Hypocalcemia from Chelation Therapy Texas, Pennsylvania, and Oregon, 2003-2005. MMWR March 3, 2006.
5. Wakefield AJ, Murch SH, Anthony A, Linnell J, Casson DM, Malik
M, Berelowitz M, Dhillon AP, Thomson MA, Harvey P, Valentine A,
Davies SE, Walker-Smith JA.
Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive
developmental disorder in children. Lancet. 1998 Feb 28;351(9103):637-41.
6. Mnookin S. The Panic Virus: A True Story of Medicine, Science, and
Fear. 429 pp, Simon & Schuster, January 2011.
7. Willrich M, “Why Parents Fear the Needle,” The New York Times,
January 21, 2011.
8. Gamble VN. Under the shadow of Tuskegee: African Americans and
health care. Am J Public Health. 1997;87:1773-1778.
9. Shui I, Kennedy A, Wooten K, Schwartz B, Gust D. Factors
influencing African-American mothers’ concerns about immunization
safety: a summary of focus group findings. J Natl Med Assoc. 2005
10. Kanner L. Problems of nosology and psychodynamics in early
childhood autism. Am J Orthopsychiatry 1949:19 (3): 416–26.
11. Badcock C, Kanner’s Curse: tarred with Bettelheim’s brush,The
Imprinted Brain: Psychology Today blog, May 13, 2010.
12. Pollak R. The Creation of Dr. B: A Biography of Bruno Bettelheim.
pp. 21-22, 478 pp. Simon & Schuster, 1997.
13. Chris Plauché Johnson, MD, MEd, Scott M. Myers, MD and the
Council on Children With Disabilities. Identification and Evaluation
of Children With Autism Spectrum Disorders. PEDIATRICS Vol. 120
No. 5 November 2007, pp. 1183-1215 (doi:10.1542/peds.2007-2361)
14. DeStefano F, Chen RT. Negative association between MMR and
autism. Lancet. 1999;353:1987–8.
15. Taylor B, Miller E, Farrington CP, Petropoulos MC, Favot-Mayaud I, Li
J, et al. Autism and measles, mumps, and rubella vaccine: No epidemiologic
evidence for a causal association. Lancet. 1999;353:2026–9.
16. Murch SH, Anthony A, Casson DH, Malik M, Berelowitz M,
Dhillon AP, et al. Retraction of an interpretation. Lancet. 2004;363:750.
17. Deer B. How the case against the MMR vaccine was fixed. BMJ.
2011 Jan 5;342:c5347. doi: 10.1136/bmj.c5347.
Deer B. Secrets of the MMR scare: How the vaccine crisis was meant to
make money. BMJ. 2011 Jan 11;342:c5258. doi: 10.1136/bmj.c5258.
Deer B. Secrets of the MMR scare. The Lancet’s two days to bury bad
news. BMJ. 2011 Jan 18;342:c7001. doi: 10.1136/bmj.c7001.
18. GMC. Andrew Wakefield: determination on serious professional
misconduct and sanction 24 May 2010.
SPM_and_SANCTION. pdf_32595267.pdf .
19. Anonymous. Retraction-Ileal-lymphoid-nodular hyperplasia,
nonspecific colitis, and pervasive developmental disorder in children.
Lancet. 2010;375:445.
20. Dominus S. The Crash and Burn of an Autism Guru, The New York
Times Magazine, April 20, 2011.
21. Ladue News, Vaccine Update: Shot or Not. October 29, 2009.
22. Offit P. Deadly Choices: How the Anti-Vaccine Movement Threatens
Us All, 270 pp., Basic Books, 2011.
None reported.
Spring/Summer 2012
Peds Lines 25
Pediatric Lessons
Caring for Children with Neurologic Devastation
by Blaine M. Sayre, MD
When asked to write about lessons learned in 40+ years
actively practicing pediatrics, I kept coming bac to the fact that
perhaps the most unique experience has been the care of those
children with the most severe forms of neurologic devastation.
Perhaps the greatest gift to me in medicine has been the privilege
of caring for such children.
Accurate nomenclature is a big item for me. I began my
training with Dr. Phillip Dodge who would not allow housestaff
to use the word “cerebral palsy” (CP). He felt that an accurate
diagnosis for encephalopathies consisted of four elements:
1. It is congenital or acquired?
2. Is it static or progressive?
3. Is it of known or unknown etiology?
4. How is it manifested?
As an example, when I became the physician for the Missouri
Children’s Home Society some 16 years ago, they were serving 17
children as residents, nearly all of whom were labeled CP. A review
of charts established a definitive diagnosis in 12 of the 17 children,
and once established, the pathophysiology of the established
diagnosis became the basis for all aspects of care and treatment.
Today, I read three reports of orthopedic treatment of such
children, each of which referred to “a child with CP here for...”.
All three children had definitive diagnoses, the understanding of
which could have a significant impact on a planned treatment,
including orthopedic care. I, too, have found myself using the
term since leaving Dr. Dodge’s domain.
Years later, I confessed this to him, and he was gracious
beyond expectations in understanding the need to do so. We
agreed, however, that his approach was a big advance, and its
failure to gain traction was quite sad.
In 1971, I first began to dwell on the appropriate care for such
children when we had a four-year-old girl, Clara S., at the Phoenix
Indian Medical Center who I personally thought was enjoying
life and whose existence made the world a better place. She was
born with a very high meningomylocele, and after multiple shunt
failures, had little discernible CNS function; however, she would
spend her waking hours sequentially touching the fingers on her
left hand and smiling while she did so.
I enjoyed seeing her each morning on the ward and her smile
elevated my spirits. When it was time for another shunt revision,
the pediatric staff took a vote and decided against another revision.
She was allowed to die. I still see her smile, and she guides me in
the complex decision-making processes that are omnipresent when
dealing with such infants and children.
For me, the lesson is obvious. If one is not focused on what
is best for a give child in a given situation, (i.e., does not have a
Clara S. to guide them), then one really should not be involved in
the decision-making process for such a neurologically-devastated
child. Otherwise, it becomes far too easy to make decisions on
what is best for physicians, allied health care workers, institutions,
26 Peds Lines
Spring/Summer 2012
political entities, and perhaps even families, rather than what is in
the ultimate best interest of the child.
To Treat or Not To Treat
In general, parents have the right and obligation to decide
what is best for their child, but his premise is often very tenuous
when it comes to treating a child with profound neurologic
devastation. Everyone would agree that if an infant is born
with non-correctable defects that are incompatible with life,
comfort care alone would be provided with the parents also being
Note that I use “comfort care,” not the phrase “hospice care,”
feeling that such children deserve, above all else, sound comfort
care with additional interventions being provided if in the patient’s
best interest. Life expectancy is simply not a term that seems
appropriate, and I never use it, allowing the child to tell me when it
is time to move on.
The children’s hospitals in St. Louis do provide hospice care;
however, their involvement is almost always open-ended and/or
intermittent. Both hospitals provide excellent services, and I have
had them involved with multiple cases, the longest current one
being five-and-a-half years old where the child is on a ventilator,
socially interacts (smiles) with family and caregivers, and seems
quite stable.
Another child recently died after four year of “hospice”
care, and his story is quite illustrative. Born with a high
menningomylocele and multiple anomalies, the parents initially
permitted many procedures; however, after a period they concluded
that he was no better and had endured much discomfort without
benefit. After the parents decided against further interventions, he
was referred to me and enrolled in hospice care.
Throughout his four-and-a-half years of life, he was very
comfortable, loved by his family, and when I would make
house calls, he would be tending to his toy, Elmo, and radiating
recognition of his caregivers with a hard-to-define satisfaction with
Once with a colleague was on call, he was sent to the
Emergency Room for a test, whereupon the family was promptly
reported to the Department of Family Services for medical
neglect. So, at the same facility, one program (hospice) was
providing ongoing supportive care, while another was reporting
the same family for medical neglect. The situation required all of
my prowess to make a molehill out of that mountain. Without
elaborating here, making house calls seems to be a critical
complement of being the primary physician for such children.
Another illustrative case is T. B., who was born to a frightened
teen mom. He had hydranencephly, and when the “team” decided
that he would not be shunted, the infant was sent to our facility for
comfort care. Although his head kept increasing, he showed more
and more evidence of neurologic activity. He enjoyed being in the
Pediatric Lessons
infant swing and would smile when doing so.
The family became very uneasy with the decision, and I had
radiology revisit the MRI, and they agreed that there was some
cortical tissue pushed to the side. Shunting was scheduled, but
T. B. almost suffered an HMO death, since the computer had a
assigned him to a managed care plan not contracted with the
scheduled hospital, then he had to be evaluated and scheduled with
another facility. During this time his head grew to the point of
leaking CSF, but a successful shunt was done, and he lived eight of
the most pleasant years one could imagine.
His mother never allowed interventions that would cause
discomfort, and she matured from a frightened teenager to a
mature, well-educated young woman who not only had sound
employment, but exuded social competence. It cannot be
overstated how satisfying it was to care for T. B. and work with this
family to base all decisions on what was best for the child.
Parents often need a great deal of support and patience as
they vacillate from one extreme to the other. I have always felt my
role to be a purveyor of accurate information, and a supporter of
An example of this was S. J., who was born with cortical
agenesis. At the Children’s Home, she thrived, and I decided that
she had met the bar for a meaningful life because I could get her
to smile, and life seemed to be pleasant for her. Her parents were
so enthusiastic when she approached three years since she would
begin formal education with an IEP.
As I’ll state in the last paragraph, I personally would not have
enrolled her, but would have embarked on a program of diverse
stimulation, i.e., take her to the zoo and to the park, plus let her
have contact with therapy dogs, etc. After the IEP meeting, the
parents were clearly devastated as they had to come to terms with
S. J.’s lack of potential, re: skill acquisition. They elected to take her
home and do traditional hospice care, stopping G-tube feedings,
ending all medical care, thus allowing her to die. That was their
choice to which I feel they were entitled.
When are parents not entitled to make a choice for no
treatment for their child? Forty years ago, I saw a newborn with
Down Syndrome, and duodenal atresia die because the parents
declined to have it repaired. Most older (or old) pediatricians
could relate similar cases. In the mid-1980s, such a case made the
news, and there was a national outcry. The Office of Civil Rights
saw this as a clear violation of Section 504 of the Rehabilitation
Act of 1973, and being with the Public Health Service at the
time, I was utilized to investigate numerous complaints around
the country on behalf of Surgeon General Everett C. Koop. That
experience was fascinating and may make another article, but
the answer to the above question is: somewhere between cerebral
agenesis and Down Syndrome, but where a parent loses that right
to choose no treatment, is left for the readers to tell me.
A related issue that comes up nearly every month is the desire
of specialists/subspecialists to do procedures on children where the
risk/benefit may clearly be against doing it. Many children in this
situation are in custody of state agencies. In some cases the parents
have given custody to the state so that the child can get necessary
care. I have never known an agency to withhold permission
whenever any procedure is recommended by a medical center
doctor. It is as if the state has infinite resources when it comes to
any medical procedures, and/or something bad would happen if
any rational analysis were applied.
The recent case of a child here in St. Louis illustrates the
point. The child lived in Canada and was nearing the end of a
degenerative CNS disease. The parents wanted a tracheostomy
done so that he could live a few weeks longer; however, Canadian
insurance would not pay for it given the clear rational analysis. So
he came to the U. S. where the procedure was done, being paid
for by a group of priests. He returned to Canada where he did live
a few weeks longer. In other words, all parties made the “right”
A case this week illustrates the current situation in Missouri.
R. K. has profound MR, and his caregivers have long questioned
if he has any functional vision, but his speech therapist requested,
and obtained that agency (Medicaid) denied a diaper request
stating that if he could communicate, he could indicate a need to
void or defecate, i.e., be toilet-trained. in the last two years, that
agency has taken the position that, “even a comatose person can
be toilet-trained,” and approval for diapers had become extremely
difficult and time-consuming.
Lastly, let me mention public education for the neurologicallydevastated child. I became involved with the development of
Missouri’s plan to provide public education down to age three in
the mid 1970s, and I served as a Hearing Officer at that time. My
initial enthusiasm was blunted by being exposed to so many cases
for which there was simply no solution. Parental expectations just
could not be met.
Currently, children are provided homebound education if they
are too medically unstable to attend school, even if they are in a
nonresponsive state. Some parents want their children to attend
school even if the child is very fragile, and the AAP has attempted
to provide guidance in this area. An excellent policy statement was
published in the May 2010 issues of Pediatrics, “Honoring DoNot-Attempt Resuscitation Requests in Schools.”
In the last twenty-plus years, I have noted the apparent agenda
of third party payers to simply shift the cost of services to school
districts. In 1984, the Supreme Count (7 to 2) supported the rule
that the only medical services NOT required to be supplied by the
school are those which must be provided by a physician. A recent
IEP meeting with a local school
district for a child with no known
cortical function, who is enrolled in
a “hospice” program, was attended by
16 people!
As a result, I have arrived at the
radical thought that public schooling
should only be provided to those
with enough cortical potential to
permit “learning.” What do you
Email me your thoughts at
[email protected]
Spring/Summer 2012
Peds Lines 27
Peds Lines
Missouri Chapter
American Academy of Pediatrics
1537 B Cedar Ridge Place
Jefferson City, MO 65109
Peds Lines
Spring/Summer 2012
That all children & youth of MO will achieve optimal
physical & mental well being.
Communications Committee
Stuart Sweet, MD, PhD, FAAP, Chair
St. Louis Children’s Hospital
Washington University
To promote the health of Missouri’s children through
advocacy, education and collaboration.
Mark Eddy, MD, FAAP
SSM Cardinal Glennon Children’s Medical Center
St. Louis University
President, MoAAP
Laura Henness, MD, FAAP
Freeman Health System
Stuart Sweet, MD, PhD, FAAP, Chair
St. Louis Children’s Hospital
Washington University
Executive Director
Johanna Derda
Jefferson City, Missouri
[email protected]
28 Peds Lines
Spring/Summer 2012
Jane Knapp, MD, FAAP
Children’s Mercy Hospital/University of Missouri - Kansas City
Kristin A. Sohl, MD, FAAP
University of Missouri
Joseph Kahn, MD, FAAP
St. John’s Children’s Hospital, St. Louis