NEONATOLOGY • CONTINUED FROM PREVIOUS PAGE
Genome Project, took 15 years. Even recently, whole human genome
sequencing typically took about 6 months.
Now, when I’m
caring for a baby
where I don’t know
the etiology of their
symptoms, I’m
thinking, maybe we
send the test today
and have results by
the end of the week.”
C A S S I DY D E L A N E Y, M D
Neonatologist
The Institute for Genomic Medicine in San Diego condensed that
process down to a few days. As a member of the Sanford Genomic
Consortium, generously funded by the Sanford Health Foundation,
Children’s Colorado is one of just a handful of centers with early
access to rapid whole genome sequencing.
If that sequencing identifies a treatable condition, it saves lives.
But even where the prognosis is less positive, there’s comfort —
and value — in knowing a definitive diagnosis.
In fact, 72 percent of diagnostic genetic test results change medical
management. Diagnosed babies spend on average 10 fewer days
in the NICU than those with a suspected genetic condition who go
undiagnosed. One study of six patients diagnosed via whole genome
sequencing showed a cost-savings of $800,000 on unnecessary care.
“We struggled with that uncertainty,” says Dr. Delaney. “Now,
when I’m caring for a baby where I don’t know the etiology of their
symptoms, I’m thinking, maybe we send the test today and have
results by the end of the week.” ●
Toward a better future for the newest lives
With big ongoing studies in prematurity, growth and nutrition, pulmonary hypertension, bronchopulmonary
dysplasia and much more, neonatologist Theresa Grover, MD, Medical Director of Children’s Colorado’s NICU,
stays busy. “We’re working on a lot,” she says.
Here’s just a small sample:
• Before neonatologist Erica Wymore, MD, started
studying it, researchers suspected marijuana might
linger in the breastmilk of nursing mothers for as long as
a month, but nobody really knew. Dr. Wymore and her
team recently discovered the actual figure is greater than
anyone expected: 6 to 8 weeks.
• As the chair of the Congenital Diaphragmatic Hernia
focus group within the Children’s Hospitals Neonatal
Consortium, a collaboration of 38 Level IV NICUs in
the U.S. and Canada, Dr. Grover and colleagues found
that even babies without a documented infection got
antibiotics for an average of 6 days during their NICU stay.
That can not only exert a profound effect on the gut flora
of a neonate but can also increase the risk of infection
down the road. But the team’s research on the actual risk
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of bloodstream infection shows it’s very low, and many
NICUs are already changing their antibiotic practices for
babies with CDH.
• Unplanned extubations can have severe consequences
for ventilated patients of any age, but the strategies that
prevent them don’t always work for neonates. The NICU
team studied these events for more than two years to
identify extubation patterns and standardize almost
every aspect of ventilator care, from how breathing tubes
are taped to how often they’re checked. The result is a
current rate of 0.5 extubations per 100 ventilator days
— one of the lowest in the nation. Still, says Dr. Grover,
“We’re not happy just getting the rate low. We want to get
it down to zero.”
NEPHROLOGY
Systems in
Communication
A baby is born with hypoplastic left heart syndrome. Within days,
she’ll undergo the first operation, the Norwood, one of three open
heart surgeries needed to survive with a single ventricle. Like any
open-heart surgery, the Norwood carries a risk of ischemia — and
where there’s ischemia, there’s a risk of acute kidney injury, or AKI.
A group of cross-institutional researchers is finding the ramifications
might range wider and deeper than anyone suspected.
“In any given intensive care unit, about one in four
patients has AKI,” says pediatric nephrologist
Danielle Soranno, MD. “And that’s probably
an underestimate, because the symptoms are
subclinical, so many of these cases we probably
don’t catch. But the consequences can be severe.”
An injured kidney causes the body to retain fluid.
The resulting overload can injure the heart. An
injured heart can’t pump as effectively, leading to
blood congestion, which further injures the kidney.
Even the drugs used in post-operative care can
compound the damage. At Children’s Colorado,
an electronic medical record alert system
identifies no less than 57 medications known to
injure the kidney.
“AKI is not just a complication,” says Sarah Faubel,
MD, Professor of Nephrology at the University of
Colorado School of Medicine and former Chair of
the Acute Kidney Injury Advisory Group for the
American Society of Nephrology. “It’s a disease
in itself. The mortality rate overall is around 20
percent. On dialysis and in intensive care it’s more
like 50 to 60 percent.”
$70,000
All that adds up to a potentially devastating vicious
cycle for a neonate with a heart already chronically
underequipped for its task.
“Kids sometimes end up needing a heart
and kidney transplant simultaneously,” says
pediatric cardiac intensivist Katja Gist, DO, one
of just a handful of cardiologists in the country
investigating the interface between kidney and
heart. “I’ve seen that happen several times.”
The cost of AKI
Patients who sustain even one episode of AKI spend more
time in the hospital, more time on ventilators, more time in
intensive care. One study estimated the additional hospital cost
at $70,000 — and that doesn’t even account for the long-term,
system-wide consequences.
“It’s actually safer to have a heart attack,” says Dr. Soranno.
NEW CONSTELLATIONS
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