Terre Haute girl's death brings attention to SUDC

An unpredictable public health concern is being highlighted in Terre Haute and other Hoosier communities in honor of a local toddler who died in 2014.

Allison Jean Hescher died at age 16 months in her crib at home. An autopsy and investigation revealed no known cause of death for the little girl, leading to the category of Sudden Unexplained Death in Childhood, or SUDC.

Now, her mother, Karen Hescher, is bringing the SUDC Banner Project to the area to spread awareness and share the SUDC Foundation’s support and advocacy for families who have experienced the sudden, unexpected death of their children.

“SUDC touched my life on May 2, 2014, when I found my happy and healthy 16 1/2-month-old daughter Allison dead in her crib,” Hescher said. “There was no warning sign. This was totally unexpected, shocking, devastating.”

The banner features photos of children who have died suddenly without a known cause. It has been displayed at fire departments, hospitals, clinics, restaurants and sports venues in the United States, Australia, New Zealand, England and elsewhere.

SUDC is not new, but it is rare, according to the SUDC Foundation. It occurs in about 1.4 deaths per 100,000 children.

While many people are aware of SIDS – Sudden Infant Death Syndrome in infants younger than 12 months – the public is often unaware of SUDC, which affects about 400 children per year through age 19.

According to the Centers for Disease Control and Prevention, in 2014 SUDC affected 202 children ages 1 to 4 years, another 25 children ages 5 to 9 years, 29 children ages 10 to 14, and 87 teenagers 15 to 19.

When Allison died, a thorough investigation of her home, room, crib and family history was done, as was an autopsy.

Medical examiner Roland Kohr, a forensic pathologist at Regional Hospital, conducted the autopsy. He told the Tribune-Star that despite multiple tests, a cause for the little girl’s death could not be determined.

“It’s a tragedy any time a child dies,” Kohr said. “You look as hard as you can for an answer, and sometimes you come up with an answer, and sometimes you don’t.”

It is common for a family whose child dies to want to know why, he said. Having an undetermined cause of death leaves many questions unanswered.

Allison’s death was particularly hard for many staff at Regional Hospital, where her mother is a registered nurse and coordinator of quality resource management.

Allison was born at Regional Hospital on Dec. 15, 2012, so Hescher feels it is appropriate that the hospital is one of the locations where the banner will be displayed.

“Allison was a delightful little girl. She was always smiling and happy,” her mother said. “She loved to be babied. She loved to suck her thumb, loved her daddy and loved to be held.”

Hescher said she last saw her little girl alive about 1:30 in the morning on May 2, 2014.

“I went to her room, patted down her wispy blonde hair, looked into her bright blue eyes, and told her everything was going to be okay, never realizing that was the last time I would ever see her alive,” Hescher said. “She was in no distress, sucking her thumb contentedly.”

Hescher said the SUDC Foundation was helpful for her family in the weeks after the little girl’s death. They helped with a fully funded DNA research project as part of the search for the cause of death.

Kohr said sometimes a death is caused by an illness or disease that is yet unknown. DNA testing can be helpful with research that could lead to a diagnosis in the future.

For now, Hescher is trying to schedule as many venues as possible to display the SUDC banner to raise awareness.

It is already scheduled to appear Thursday and Friday at Raggedy Ann’s Day Care and Preschool, where Allison attended; at the Terre Haute Children’s Museum on Dec. 2 and 3; and in the lobby at Regional Hospital on Dec. 4 and 5.

Hescher has requested a display of the banner at ISU’s Hulman Center, Lucas Oil Stadium for a Colts game, Bankers Life Fieldhouse for a Pacers game, at Mackey Arena for a Purdue basketball game and at other locations. It will be available until Dec. 18, when she will return the banner to travel with the next family who has requested it.

Hescher said she is thankful Allison was part of her family, and it has become her mission to spread SUDC awareness until answers can be found.

“I am so thankful for the 503 days Allison spent with us on earth,” Hescher said. “She brought so much joy to our family. She has taught us important life lessons – to love unconditionally, in life and in death.”

Lisa Trigg can be reached at 812-231-4254 or at lisa.trigg@tribstar.com. Follow her on Twitter at

Here is a link to a court case where a family was able to prove the DTaP shot did indeed cause their babies death. https://ecf.cofc.uscourts.gov/cgi-bin/show_public_doc?2013vv0611-70-0

Nick and Marjorie Catone are working hard to spread the word after losing their little boy Nickolas to SUDC. “If you follow my husband & I on fb...we absolutely agree that all of these sudden “unexplained” deaths are related to vaccines...absolutely, 100% agree...not one doubt in my mind...we have huge followings & even more so since we’ve done hours of research...our son Nickolas passed away May 12th of this year...completely healthy, beautiful, happiest child ever...until we began looking back at his health record & started putting the links together. Now we are 6 months in & hired a second neuropathologist to re-review the crap job the original guy did & have proof Nickolas passed from vaccination...we are now filing in vaccine court.”

The numbers of children dying are under reported.
From this article/link http://www.thelancet.com/pdfs/journals/lanchi/PIIS2352-4642(17)30003-2.pdf
“No public health official knows the precise incidence
of SUDC. Based on US data from the CDC in 2015,
we estimate a minimum of 393 deaths, but no
specific International Classification of Disease (ICD)
code exists for a death that has an unknown cause
despite comprehensive investigation.1

SIDS has its own
code, allowing comparison of trends over time and
assessment of public health interventions. In Ireland,
the only country to track SUDC cases, the incidence
has more than doubled in the past 15 years, while
the incidence of SIDS—like in many other countries—
declined by more than half.5

SUDC most frequently occurs in boys
aged 1–3 years who are born full term as singletons
(63–64%).2,5 Such deaths usually occur during sleep
(>95%) and are unwitnessed (>90%); children are often
found unresponsive in the prone position (75%), and
with their faces down (50%).6
More than 40% of deaths
occur during the winter.6

The most common medical
history is febrile seizures, reported in about 30% of
cases.2,6 SUDC cases associated with febrile seizures
tend to be reported in older children (median age 24 vs
19 months for SUDC cases without a history of febrile
seizures; p=0·03).6

Autopsy results often reveal minor
pathological findings, but they do not explain the death.
Subtle abnormalities in the hippocampus have been
identified in SUDC and SIDS cases.7,8 In SUDC, these
neuropathological findings are most often reported
in children with febrile seizures, which can result from
interictal epileptiform discharges in hippocampal slices
and seizures in animals studies.9

These neuropathologies are usually seen in the temporal lobes of patients with epilepsy.10 We suspect that these hippocampal findings result from seizures and interictal epileptiform activity
and provide a clue to the mechanism of death in some
cases (seizure-induced postictal depression of arousal
and respiratory and cardiac function), but these changes
are neither the cause of seizures nor proven related to
death. In some children, hippocampal or neocortical
malformations can cause epilepsy, which increases risk
of sudden death. We found that about 10% of children
who died from SUDC have pathogenic de novo or
inherited mutations in cardiac channel and epilepsy
genes (unpublished data). However, in most cases,
the cause of death remains unknown. Epidemiological
studies on environmental risk factors and systematic
genetic studies are needed, as well as studies on how
consistently and accurately medical examiners and
coroners investigate and identify SUDC.

More research is needed to understand SUDC.
Medical examiners and coroners need to standardise
investigations and reporting of sudden childhood
deaths. The pressure to identify a single cause of death
with insufficient evidence leads to underestimations
of SUDC incidence and buries an opportunity to
investigate what we do not understand under a false
conclusion. SUDC has also escaped the spotlight
because it is outside the domain of any medical
specialty to champion its understanding and
prevention. SUDC cases are no one’s patient—falling
into the limbo between paediatricians and medical
examiners. These deaths strike seemingly healthy
children unpredictably, and prevention strategies do
not exist. With a rate of 1·4 in 100 000 toddlers aged
1–4 years, most paediatricians do not encounter a
case of SUDC in their career.1

Families who experience
SUDC are understandably overwhelmed by grief,
but they also face paralysing medical uncertainty for
their family’s safety, and are often simultaneously investigated by law enforcement to ensure a crime has
not been committed.11 SUDC remains under the radar
of public health and research communities. It is time
that the medical establishment charts a successful path
to understand and prevent sudden death in children.

*Laura Crandall, Orrin Devinsky
Department of Neurology, NYU School of Medicine,
Comprehensive Epilepsy Cen

The National Vaccine Injury Compensation Program (”Vaccine Program”) comprises Part 2 of the National Childhood Vaccine Injury Act of 1986 (”Vaccine Act”). See Pub. L. No. 99-660, 100 Stat. 3755 (1986) (codified as amended at 42 U.S.C. §§ 300aa-1 to -34). The Vaccine Act became effective October 1, 1988. It establishes the Vaccine Program as a no-fault compensation program whereby petitions for monetary compensation may be brought by or on behalf of persons allegedly suffering injury or death as a result of the administration of certain compulsory childhood vaccines. Congress intended that the Vaccine Program provide individuals a swift, flexible, and less adversarial alternative to the often costly and lengthy civil arena of traditional tort litigation.

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