Laney’s Story: The Problem of Delayed
Diagnosis of Pediatric Stroke
Brian T. Fitzsimons,a Laura L. Fitzsimons,a Lisa R. Sun, MDb,c

Childhood ischemic stroke is rare, with
an incidence between 1.2 and 8 per
100 000 person-years.1,2 As a result,
stroke is often not initially considered
when children present even with
classic signs of ischemia, leading to
significant diagnostic delays.3–7 Given
the time dependence of stroke
treatment, even short delays in
diagnosis may lead to poorer outcomes.
Parent advocacy groups and
collaborations of pediatric stroke
specialists work to improve recognition
of pediatric stroke through research,
social media campaigns, and education.
These groups are often born of tragedy:
a patient suffers a devastating stroke,
and a physician turns her efforts to
champion the field while a parent
rallies families to advocate for
improved recognition of a shared
diagnosis. In this case, the death of
a bright, beautiful 4-year-old girl
inspires a family to dedicate her legacy
to this noblest of causes: spreading her
story so that someone else’s child
may live.

LANEY’S FATHER
Recounting the days of Laney’s first
transient ischemic attacks (TIAs) and
strokes and the horror and confusion
that accompanied that time is
something I would never wish on any
parent. But if this article can help
even 1 child receive a faster stroke
diagnosis, then it is worth every painful
word that I type.
First, I want you to know Laney. She
had flowing auburn hair, an infectious
smile with a gap in her front teeth, and

an uncanny elegance for a 3-year-old
girl. But a 3-year-old girl she was. She
loved jumping in muddy puddles,
“flying” around the house as Supergirl,
and running around in circles until she
was dizzy. She could put together
a puzzle faster than some adults I know,
manipulate a chocolate from her
enchanted parents, and melt your heart
with her big brown eyes. She was our
whole life. In our minds, we were the
happiest family on Earth.
It all began on May 7, 2016. We had
recently returned from vacation, where
Laney hiked miles every day in Sedona,
Arizona. We will always remember
these days as our best days. Laney, at
3.5 years old, was taking a bath when
she suddenly started speaking with
a slight slur. It was subtle, and we
attributed it to her being tired.
Two weeks passed. We were in the
kitchen when Laney started speaking
with a slur and developed a facial
droop. We called 9-1-1, and Laney was
taken to a local emergency department
(ED) where the doctor suspected she
was having seizures. Laney was
transported to another hospital where
an overnight EEG revealed “seizurelike” activity, and the doctors
recommended an MRI. Because this
was a Sunday morning, with no
anesthesiologists available, we were
given the choice of keeping Laney in the
hospital until Monday or taking her
home and scheduling the MRI soon. We
took Laney home to save her from
the distressing hospital setting. There
was no mention of stroke during either
of these hospital visits.

a

Parent; and bDivisions of Pediatric Neurology and
Cerebrovascular Neurology, Department of Neurology,
School of Medicine, Johns Hopkins University, Baltimore,
Maryland
c

Mr Fitzsimons made substantial contributions to the
conception and drafting of this manuscript as well
as to critical revision; Ms Fitzsimons contributed to
the conception of this manuscript as well as to
critical revision; Dr Sun made substantial
contributions to the conception of this manuscript,
wrote the first draft, and critically revised
subsequent drafts; and all authors approved the
final manuscript as submitted and agree to be
accountable for all aspects of the work.
DOI: https://doi.org/10.1542/peds.2018-3458
Accepted for publication Jan 23, 2019
Address correspondence to Lisa R. Sun, MD,
Divisions of Pediatric Neurology and
Cerebrovascular Neurology, Department of
Neurology, School of Medicine, Johns Hopkins
University, 200 N Wolfe St, Suite 2158, Baltimore, MD
21287. E-mail: lsun20@jhmi.edu
PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online,
1098-4275).
Copyright © 2019 by the American Academy of
Pediatrics
FINANCIAL DISCLOSURE: The authors have indicated
they have no financial relationships relevant to this
article to disclose.
FUNDING: No external funding.
POTENTIAL CONFLICT OF INTEREST: The authors have
indicated they have no potential conflicts of interest
to disclose.
To cite: Fitzsimons BT, Fitzsimons LL, Sun LR.
Laney’s Story: The Problem of Delayed Diagnosis
of Pediatric Stroke. Pediatrics. 2019;143(4):
e20183458

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PEDIATRICS Volume 143, number 4, April 2019:e20183458

FAMILY PARTNERSHIPS

Three days later, Laney experienced
the same symptoms (slurred speech,
drooping mouth and face, and trouble
walking) but more severe. We
rushed her to a different ED and
showed the doctors and even
a neurologist a video of the event. She
was again diagnosed with seizures
and discharged with a prescription
for oxcarbazepine. There was no
mention of stroke.
A week later, at Laney’s first
neurology appointment, we showed
the neurologist the video and
described her symptoms. The
neurologist diagnosed Laney with
complex partial seizures and told us
to continue oxcarbazepine. He said
we could wait 3 months for the MRI
to give Laney a break.

LANEY’S NEUROLOGIST
Months before I met her, Laney had
a series of TIAs consisting of
dysarthria, facial droop, and inability
to walk. In any adult, these would
have been immediately recognized as
a warning sign of impending stroke.
But because Laney was 3 years old,
they were misdiagnosed as complex
partial seizures.
In 1 study, 4% of children admitted
with a diagnosis of TIA had
a secondary diagnosis of stroke
within the same hospitalization.8 This
is concordant with data that 1% to
10% of adults who experience a TIA
will have a stroke within the next
48 hours.9 Despite the importance of
recognizing TIA, mimics of TIA or
stroke are substantially more
common than ischemia in the
pediatric population, and they can be
easily misdiagnosed as complex
partial seizures, postictal Todds
paralysis, complicated migraine, or
functional disorders. In any child with
a new-onset focal neurologic deficit,
even if preceded by a first-time focal
seizure, high suspicion for a vascular
cause is imperative.

LANEY’S FATHER
Tragically, Laney had a severe
reaction to oxcarbazepine. We took
her back to the hospital, where
doctors, in consultation with her
neurologist, gave her lorazepam
instead and discharged her.
After the hospital, we took Laney to
the nearby Chuck E. Cheese’s. We ate
pizza, took pictures, and played
games. We won more tickets that day
than we had in all our other visits
combined. We were deliriously happy,
if just for a moment. That was the last
time we ever spent with our healthy
little girl. I think about those joyful
hours every day.
The following morning, almost
a month since Laney’s initial
symptoms, Laney woke up unable to
stand, speak, eat, or drink. She
wanted so badly to communicate, but
the words would not come out as
tears rushed down her cheeks. We
called 9-1-1. The medics arrived as
Laney was writhing on the floor. They
did not consider stroke but instead
administered epinephrine. In
hysteria, Laney was transported back
to the hospital. She was unable to
stand or speak. Her heart rate
climbed to ∼190 beats per minute,
and I ran throughout the ED floor
looking for a doctor to help Laney,
who appeared to be dying in front of
our eyes.
Our little girl was not talking and was
barely moving. Laney was transferred
to a larger hospital where doctors
concluded that she was tired from her
seizures. She had high blood pressure
(which we now know was to help
perfuse blood to her brain to prevent
stroke), and they gave her medicine
to lower it. Again, because no
anesthesiology staff was available
over the weekend, they could not do
an MRI. There were no wheelchairs
available, so I carried Laney’s limp
body across the hospital to radiology
for a head computed tomography
scan. I will never forget that
long walk.

Finally, on Monday, June 6, 2016,
Laney underwent an MRI. The
doctors informed us that Laney has
suffered multiple acute strokes and
had severe brain damage. This was
the first time we had heard the word
“stroke” since Laney’s symptoms
began. We were devastated and
frantically wanted to help her. We did
not yet realize that this damage was
permanent and that the Laney we
knew and loved was gone.
Over the next months, Laney
continued to have strokes as doctors
struggled to stabilize her. Those
days were filled with innumerous
horrors. We never left Laney’s side
and did not leave the hospital
grounds for the entire summer. After
months in the hospital and brain
surgery, Laney was transferred to
inpatient rehabilitation. She worked
valiantly in speech, occupational, and
physical therapy. Laney’s therapists
were wonderful, and she began to
laugh, smile, and regain strength.
Laney was discharged that fall and
continued in intensive outpatient
rehabilitation. She worked so hard
and even learned how to
communicate with buttons and sit up
on her own. Laney would even hold
her little sister, whom she loved
fiercely.

LANEY’S NEUROLOGIST
I only met Laney after her prolonged
hospitalization and inpatient
rehabilitation, but she captivated me
immediately despite being devastated
by moyamoya disease, a cerebral
vasculopathy that, in Laney’s case,
was relentless and caused multiple
strokes that stole her ability to move
and speak. Reviewing Laney’s course,
it was easy to identify in retrospect
the delays in stroke recognition and
cognitive biases, including anchoring,
that contributed to the delayed
diagnosis. But hindsight is 20/20, and
given how common seizures are in
children, it is not hard to imagine
a thoughtful, capable pediatrician or

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2

FITZSIMONS et al

neurologist making the misdiagnosis.
Laney’s case is unfortunately not an
exception. Multiple studies have
revealed that the average time to
diagnosis of childhood ischemic
stroke is .22 hours.3–7 In 1 study,
arterial ischemic stroke was only
considered as a possible diagnosis in
a quarter of cases of childhood stroke
despite focal deficits being a part of
the presentation in 86% of cases.7
Even if the need for neuroimaging is
recognized, in most centers, MRI is
not available around the clock. It is
even less common for centers to have
emergency pediatric anesthesiology
available, a necessity when the
duration of an MRI far exceeds the
time a child, particularly one in
distress, can remain still. As a result,
it is not surprising that presentation
outside of normal working hours
leads to delayed neuroimaging and
diagnosis.6
Early diagnosis of stroke is critical for
early implementation of
neuroprotective measures,
assessment for candidacy for
hyperacute therapies (such as
mechanical thrombectomy and
intravenous thrombolysis), avoidance
of harmful medications (such as
antihypertensives), treatment of risk
factors for stroke recurrence, and
early implementation of rehabilitative
therapies. Fortunately, primary
pediatric stroke centers are emerging
as centers with around-the-clock
ability to rapidly diagnose and treat
pediatric strokes.10 Emergent transfer
of any child with suspected acute
ischemic stroke to a primary pediatric
stroke center should be considered
when safe and feasible.

LANEY’S FATHER
Tragically, in December 2016, Laney
suffered another stroke. After
multiple failed medical interventions
and visits to several medical centers,
Laney was placed on hospice care.
Our little girl finally succumbed and
died on March 27, 2017. We kissed

her little face and body until the
second the funeral-home transport
took her away.

LANEY’S NEUROLOGIST
Brian and Laura were and still are
Laney’s fiercest advocates. In the
darkest of moments, they mourned
her loss while simultaneously
celebrating her beautiful life. I learn
from their courage, revel in my
fortune in having been a part of
Laney’s life, and take solace in the
bright eyes of her little sister gazing
at me from a Christmas card
pinned at my desk. To this day, they
tirelessly fight for the victims of
childhood stroke, and it has been
a privilege to join them in this
journey.

PARENT-PHYSICIAN PARTNERSHIP
During Laney’s life, our partnership
was focused on managing the
complications of Laney’s brain injury,
optimizing her rehabilitation,
preventing further strokes, and,
eventually, keeping Laney
comfortable at home. Our
partnership, forged by our joint goals
and mutual adoration for Laney,
continued after her death, this time
fueled by the “what ifs” and “should
haves” of her life.
Together, we testified as a united
family and physician team to the
Maryland House of Delegates and
Senate, along with others affected by
pediatric stroke, to advocate for
legislation targeted at improving
recognition of childhood stroke. With
a beautiful poster of Laney between
us, her father powerfully depicted
the toll of pediatric stroke on their
family, bolstered by medical facts and
statistics from her doctor. If it is
passed, the proposed bill will
mandate education about pediatric
stroke for licensed child care
providers, school nurses, and
directors of student services in local
education agencies.

Laney’s parents established the Laney
Jaymes Foundation in 2017 with the
missions of expanding pediatric
stroke awareness, supporting
research, and providing adaptive
equipment to children who have
suffered from stroke. Together, we
identify clinical and research
priorities that merge the goals of
physicians and scientists with those
of patients and families. For example,
with guidance from Laney’s doctors,
the foundation is actively funding
research to better understand
childhood cerebral vasculopathy, the
most common cause of childhood
stroke, and specifically moyamoya
disease, the type of vasculopathy
from which Laney suffered. The
foundation both funds the research
and helps guide its trajectory (with
consistent collaboration between
parents and physician scientists),
incorporating both viewpoints and
sets of priorities as we work toward
the common goal of helping children
like Laney.
The joint family-physician voice has
the potential to be incredibly
impactful. With Laney’s inspiration,
we continue to work together to
make meaningful strides in research,
education, and legislation to improve
the lives of children with stroke.

ABBREVIATIONS
ED: emergency department
TIA: transient ischemic attack

REFERENCES
1. Felling RJ, Sun LR, Maxwell EC,
Goldenberg N, Bernard T. Pediatric
arterial ischemic stroke: epidemiology,
risk factors, and management. Blood
Cells Mol Dis. 2017;67:23–33
2. Lynch JK, Nelson KB. Epidemiology of
perinatal stroke. Curr Opin Pediatr.
2001;13(6):499–505
3. Rafay MF, Pontigon AM, Chiang J, et al.
Delay to diagnosis in acute pediatric
arterial ischemic stroke. Stroke. 2009;
40(1):58–64

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3

4. Gabis LV, Yangala R, Lenn NJ. Time lag to
diagnosis of stroke in children.
Pediatrics. 2002;110(5):924–928
5. McGlennan C, Ganesan V. Delays in
investigation and management of acute
arterial ischaemic stroke in children. Dev
Med Child Neurol. 2008;50(7):537–540
6. Mallick AA, Ganesan V, Kirkham FJ, et al.
Diagnostic delays in paediatric stroke.
J Neurol Neurosurg Psychiatry. 2015;
86(8):917–921

7. Srinivasan J, Miller SP, Phan TG, Mackay
MT. Delayed recognition of initial stroke
in children: need for increased
awareness. Pediatrics. 2009;124(2).
Available at: www.pediatrics.org/cgi/
content/full/124/2/e227
8. Adil MM, Qureshi AI, Beslow LA, Jordan
LC. Transient ischemic attack requiring
hospitalization of children in the
United States: kids’ inpatient database
2003 to 2009. Stroke. 2014;45(3):887–888

9. Wu CM, McLaughlin K, Lorenzetti DL, Hill
MD, Manns BJ, Ghali WA. Early risk of
stroke after transient ischemic attack:
a systematic review and meta-analysis.
Arch Intern Med. 2007;167(22):2417–2422
10. Bernard TJ, Rivkin MJ, Scholz K, et al;
Thrombolysis in Pediatric Stroke Study.
Emergence of the primary pediatric
stroke center: impact of the
thrombolysis in pediatric stroke trial.
Stroke. 2014;45(7):2018–2023

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FITZSIMONS et al

Laney's Story: The Problem of Delayed Diagnosis of Pediatric Stroke
Brian T. Fitzsimons, Laura L. Fitzsimons and Lisa R. Sun
Pediatrics originally published online March 12, 2019;

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Laney's Story: The Problem of Delayed Diagnosis of Pediatric Stroke
Brian T. Fitzsimons, Laura L. Fitzsimons and Lisa R. Sun
Pediatrics originally published online March 12, 2019;

The online version of this article, along with updated information and services, is
located on the World Wide Web at:
http://pediatrics.aappublications.org/content/early/2019/03/08/peds.2018-3458

Pediatrics is the official journal of the American Academy of Pediatrics. A monthly publication, it
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