The Culture of Different MKTG_150064494_2018 Service Line Big Book Full_FIN | Page 80

Care For Kids with Anorectal and Urogenital Malformations
Urology • Pediatric and Adolescent Gynecology • Pediatric Surgery
She’ll potentially be Ariana’s doctor for life.
As Ariana grows, she can transition to adult care at
the University of Colorado Hospital next door. Both
Dr. Alaniz and Dr. Bischoff have practices there.
“We want to be their everything,” says Dr. Bischoff.
“For potty training, for the start of menstruation,
the start of sexual function. We want to assist with
fertility if they need it. We want to be there for
delivery. It’s a full cycle.”
Care for life, all over the world
Fernanda Lage, MD, is the only pediatric surgeon
in the state of Acre, Brazil. Bordering Bolivia
and Peru on Brazil’s far western frontier, it is, by
American standards, unimaginably remote.
“For 12 years I’ve been working alone out here in the
jungle,” says Dr. Lage. “I like to say it’s just me and God.”
Dealing with prevalent malnutrition, incest
and lack of prenatal care, Dr. Lage sees a lot of
anorectal malformations for her sparse population
— about 10 or 15 a year. She’ll manage 100 percent
of their care.
“I am their doctor,” she says. “I will care for them
all my life.”
She learned it from Dr. Peña.
Since 1985, Dr. Peña and his team have hosted
courses on anorectal reconstructions — with live
surgical demonstrations — a few times a year.
They’ve done 62 of them in the U.S., and another
120 around the world, on five continents.
Dr. Lage went to one in 2006, the year she finished
her pediatric surgery fellowship, in Rio de Janeiro.
She went again in 2013. In 2017, she attended the
course at Children’s Colorado.
“I hope to go more times,” she says. “Every time I
learn something new.”
This year, she learned better laxative management
for kids having trouble soiling — which almost all
of Dr. Lage’s patients were. She’d tried managing
diet before, but after this year’s course she
switched to a stronger laxative dose. Most of her
patients have stopped having accidents.
That’s a very real short-term gain. In the long term,
after listening to presentations from Drs. Wilcox
and Alaniz, Dr. Lage realized she needed to recruit.
“I see how much value they give to their team,”
she says. “Here, I am the pediatric surgeon, the
radiologist, the gynecologist, the nurse — I am
everyone. So now I am trying to make a team,
because I have learned from them how important
that is.”
Recently she asked the Public Health Department
of Brazil for two dedicated nurses — she’s been
promised at least one so far. As a professor in the
medical school at the Federal University of Acre,
she’s also trying to involve her students.
It’s not easy. In Brazil, pediatric specialties aren’t
highly valued. Pediatric-specific tools are scarce,
pediatric hospitals few and far between. Dr. Lage
is a popular instructor who consistently wins
student-favorite awards, but of the 400 or so
students she’s worked with over the years, exactly
three have gone into pediatric surgery.
“To me this is a crisis of public health,” she says.
“It is really hard. Dr. Peña and Dr. Bischoff have
taught me a lot, but they also give me the courage
to keep going.”
The crisis is not unique to Brazil. Every day, kids
born with treatable colorectal malformations get
bad reconstructions and, in an instant, lose their
chance to live normally, to find intimacy, to have
children of their own.
“It happens even in the United States,” says
Dr. Bischoff.
In one far-flung corner of the Amazon rainforest,
kids are getting that chance.
The next generation
On a sofa in Children’s Colorado’s Maternal-Fetal
Care Unit, Linda Sibilia bounces her 5-month-old
baby, Benjamin Nieto, in her arms. John and Yva
sit on either side. They’ve come to see Dr. Peña.
Without him, it’s almost certain Benjamin could
not have been.
(From right) Pediatric colorectal surgeons Andrea Bischoff, MD, and
Alberto Peña, MD, meet Linda Sibilia’s son, Benjamin Nieto. Linda was
born with a urogenital malformation called cloaca, which Dr. Peña
reconstructed 30 years ago.
Linda is not Dr. Peña’s first patient to give birth,
but her case is the most complex so far. With her
long common channel, plus hemivaginas and
hemiuteri (she carried the baby in her left uterus),
a successful pregnancy was far from guaranteed.
Benjamin’s was complicated — preeclampsia
necessitated a cesarean section at seven months
— but he’s healthy.
It’s not an outcome Dr. Peña could have predicted
30 years ago.
“In those days, I never thought about that,” he says.
“I never dreamed I would be sitting here in Denver
with the next generation.”
And yet, he sowed the seeds to make it so.
Performing Linda’s surgery cleanly and correctly
was only the first step. He made himself open.
He stayed in touch.
He has photos of birthdays, weddings, graduations.
He followed Linda as she learned swimming,
ballet, taekwondo. She went to the junior
Olympics. And when she had health problems —
which children with congenital anomalies often
do — he was there, too. John used to carry around
his card.
“I’d say, ‘Before you do anything, you gotta call
him,” he says.
His counsel, in part, kept Linda healthy over the
years, and perhaps it was in part his compassion
that gave her the confidence to pursue what she
wanted, from athletics to relationships.
“When I was dating,” she says, “I’d be like, ‘So these
are my issues, and you can decide if you want to
continue or go on your way. If you don’t accept it,
the door’s there.”
Dr. Peña laughs. “We are always so impressed
by our patients with these devastating
malformations, how strong and optimistic
they can be,” he says. “Traditionally, surgeons
operate and then send the patient back to the
pediatrician. I believe they miss something very
important. I have pictures of Linda as she was
growing, and now you are here, and I get to meet
your son. You made our day.”
John leans forward, telegraphing a look of utter
sincerity. “You made our life.”
The Culture of Different
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