TRANSPLANT PROGRAMS
KEEPING PROMISES
AMARA WISMANN-ESPINOSA’S HARROWING EXPERIENCE COULD
SOON BE A THING OF THE PAST
Meet Amara
Two-year-old Amara Wismann-Espinosa circulates the house at a full sprint, popping the ball
popper like it was her job. “You’d never guess she was sick,” says Nick Wismann, her dad. For
the last couple of days she’s had diarrhea and a nasty cough. Amara catches a lot of normal
childhood bugs, a side effect of the immunosuppressive drugs that keep her body from
rejecting her transplanted liver.
Amara had biliary atresia, a
progressive fibro-obliterative
disorder affecting the liver and
biliary system that results in endstage liver disease and liver failure
by age 2. Though relatively rare, it
accounts for 50 percent of pediatric
liver transplants in the U.S.
a known complication of liver
transplantation. Amara had spent
months on the waitlist for her first
transplant, and while her doctors at
Children’s Colorado were doing all
they could to keep her stable, they
knew she’d need another transplant,
very, very soon.
At 26 days old, Amara’s doctors
at Children’s Hospital Colorado
performed the “Kasai,” an operation
to reestablish the flow of bile into
her bowel. It’s a common operation
for children with biliary atresia, and
while it doesn’t cure the disease, it
can help. Eventually though, most
children with biliary atresia will need
a transplant.
“That was the worst day of my life,”
says Nick.
Amara got one at 16 months old.
“Three days later, we noticed
something wasn’t right,” says Nick.
Amara had developed a hepatic
artery thrombosis, a blood clot in
the artery that supplies the liver,
“I’m not a person who prays,” says
Angelica Espinosa, Amara’s mom,
“but I went to the chapel that night
and I prayed for like three hours. I
prayed to the Virgin of Guadalupe
— I honestly don’t remember why.
But I promised her I would start a
nonprofit to help other families with
biliary atresia, and that I would take
Amara to Mexico to see the Virgin if
she would let my baby live.”
Within hours, a liver came
through. “That second liver was
a miracle,” Angelica says.
In some ways, every organ
transplant is miraculous. But
transplantation is not without
problems. No treatment is more
invasive, and none as fraught
with risk. Living with a transplant
requires a cocktail of critical drugs
and the constant, lifelong vigilance
of a comprehensive transplant team.
In an ideal world, doctors would
be able to treat the primary liver
disease in a child like Amara
and avoid the risks of transplant
altogether. That day could soon
come. Researchers like Cara Mack,
M.D., one of Amara’s pediatric
hepatologists at Children’s
Colorado, are exploring the root
causes of biliary atresia. A drug
that could treat the disease’s
basic inflammation is currently
in its Phase II trial at Children’s
Colorado. “It’s too early to know
if it’ll work,” says Dr. Mack, “but
because it targets many features
A drug that could
treat the disease’s
basic inflammation
is currently in its
Phase II trial
at Children’s
Colorado.
of the immune system, it has
good potential to slow down
inflammation.”
In the meantime, Angelica has
made good on her promises. She
and Nick took Amara to Mexico
to meet the Virgin of Guadalupe
within months of her transplant.
They started a non-profit called
Amara’s Smile to assist families of
children with biliary atresia with the
non-medical expenses and logistical
problems that pile up during long
hospital stays. They’ve already
helped six families from as far
away as Ecuador.
In many ways, Angelica’s promises
to the Virgin have become a fulltime job. She’s happy with that.
The harrowing night she made
them touched every aspect of
her life. “When you go through
something like that,” she says,
“you never get over it.”
Amara Wismann-Espinosa, blissfully unaware of how miraculous she is.
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