The Culture of Different MKTG_150064494_2018 Service Line Big Book Full_FIN | Page 38

The Future of Single Ventricle Care Will Be Engineered
Cardiology and Heart Surgery • Gastroenterology and GI Surgery
Pulmonology • Pediatric Surgery • Psychology
stresses the organs, particularly
the liver, which invariably
develops fibrosis. It taxes the
heart, strains the kidneys, injures
the brain, depletes the bones.
“Essentially these kids need to
see everybody in the hospital,”
says pediatric cardiologist
Michael Di Maria, MD, Co-
Director of the Single Ventricle
Care Program at Children’s
Colorado. “Ten or 15 years ago,
we were all just trying to get
these kids to live. We’re no
longer satisfied with that.”
Diseases like HLHS are rare,
and cardiology programs have
few neuropsychologists in
the nation specializing in co-
morbidities of congenital heart
disease. “We know the brains
of kids with HLHS are different,
starting in the third trimester of
pregnancy, through adulthood.”
Dr. Wolfe works with kids
and families to assess for
neurodevelopmental issues
and to plan for the educational
challenges that might result.
Meanwhile, multidisciplinary
partners like Deborah Liptzin,
MD, the program’s dedicated
pulmonologist, and Michael
Narkewicz, MD, its hepatologist,
study co-morbidities of Fontan
“In adult medicine, the cardiac
population is in the hundreds
of thousands,” he says. “Here,
we’ve got a couple of hundred
kids, but compared to 20 or 30,
that’s huge. If we can connect
with ten other institutions,
we’re talking 2,000 patients.
Now we can learn as a group.”
These groups are amassing
long-term data that’s changing
the course of treatment. Where
once doctors advised kids on the
Fontan circuit to avoid straining
it with exercise, for example, the
data now clearly shows active
kids achieve better long-term
outcomes. Collaborations
“Ten or 15 years ago, we were all just
trying to get these kids to live. We’re no
longer satisfied with that.”
MICHAEL DI MARIA, MD
Co-Director, Single Ventricle Care Program, Heart Institute
typically referred complications
of single-ventricle circulation
— such as cirrhosis of the
liver or plastic bronchitis — to
subspecialists as needed. These
days, the Single Ventricle Care
Program wraps in subspecialties
as soon as the Fontan circuit is
complete: pediatric hepatology,
pulmonology, psychology and
even neuropsychology.
“Many of these kids have
some degree of hypoxic
white matter injury,” says
Kelly Wolfe, PhD, one of the
circulation from new angles.
Dr. Liptzin has identified
higher rates of asthma in
kids with Fontan circulation.
Dr. Narkewicz is working to
identify kids with more rapidly
advancing liver fibrosis for
earlier intervention. among institutions have led
to trials of drugs to help with
exercise tolerance, which
programs like the Adult
Congenital Heart Disease Clinic
at Children’s Colorado can use
to help eve