The Culture of Different MKTG_150064494_2018 Service Line Big Book Full_FIN | Page 48

Saving “The Sickest Baby in the Hospital”
Neonatology • Pulmonology • Cardiology and Heart Surgery • Nephrology
Pediatric Surgery
Warren and Melissa wanted to keep Noah’s
outpatient care at Children’s Colorado, but their
home and family were in Illinois and they didn’t
want to relocate. They convinced Noah’s large
multidisciplinary team to allow them to stay in
Illinois and treat him remotely from Colorado.
What that means is that pediatric nephrologist
Jens Goebel, MD, emails them weekly to adjust
Noah’s ace inhibitor and diuretics as needed, since
he has a history of acute kidney injury.
It means that Alicia works with Noah’s Illinois
pediatrician to monitor his pulmonary hypertension
through orders, tests and labs, and coordinates care
between his specialists in Colorado.
It means that a Children’s Colorado hematology
physician contacted them before Noah had a
corrective surgery on Sept. 28; they monitored
labs in Illinois and discussed a pre- and post-
operation plan for anticoagulants.
It’s a complicated set-up, but it’s what the care
team and the Lindsays are willing to do to ensure
Noah receives the best care possible. And it
won’t last forever. For now, the Lindsays bring
Noah back to Colorado for check-ups every three
months, but that will taper to six months, and
then to just once a year.
“It reflects that the team created a plan for him
when he left, rather than just passing him off to the
Illinois docs,” Melissa says.
The Colorado Fetal Care
Center is one of t he few centers
in the country approved
for fetoscopic endoluminal
tracheal occlusion (FETO) for
severe CDH.
How the Lindsays ended up
in Colorado
At Melissa’s 18-week ultrasound in Illinois, a
maternal fetal medicine (MFM) specialist found an
anomaly and diagnosed their fetus with CDH. That
MFM didn’t see many babies with this condition;
according to Melissa, she didn’t know of any CDH
specialists in the state.
Their MFM connected them to a family that
pointed them to one of the world’s leading centers
for CDH: the Colorado Fetal Care Center at
Children’s Hospital Colorado. The team responded
to their inquiries immediately.
“We knew Children’s Colorado was the place we
wanted to focus our attention,” Warren adds.
“That was a pivotal moment.”
The Lindsays flew to Colorado twice during
Melissa’s pregnancy. For the first visit, a care
coordinator scheduled all their appointments so
they could move from one provider to the next —
all in the same place, on the same day. The level of
customer service they received felt dramatically
different than any other care facility.
“It’s a really horrible thing to hear, but when you have
a team like that giving you every answer you could
want and need, you have every tool to make the best
decisions for your child’s care,” Melissa says.
What makes a good doctor
For the rest of Melissa’s pregnancy, she and
Warren emailed questions to the members of
their team at the Colorado Fetal Care Center.
A day later, a physician or nurse would call them
and answer their questions. That attentiveness
never changed.
“It has been present the entire time we’ve
been with Children’s Colorado,” Melissa says.
“It’s cultural.”
Melissa delivered Noah at the Colorado Fetal Care
Center via cesarean section.
“It eliminated a lot of stress for us,” Melissa says.
“It was beautifully structured.” For every CDH delivery, the same team of
specialists from the Colorado Fetal Care Center
gathers in the delivery room and the adjacent
infant stabilization room — that includes
neonatologists like Drs. Gien and Kinsella;
obstetrician Frank Chow, MD; maternal fetal
medicine specialist Henry Galan, MD; and
fetal surgeons Kenneth Liechty, MD, and
Rony Marwan, MD.
At the end of that first day, Melissa and Warren
gathered in a conference room with the specialists
who would be involved in their care: a maternal
fetal medicine specialist, fetal and pediatric
surgeons and neonatologists. They explained CDH
in detail, what they could expect for the remainder
of the pregnancy, at delivery, after delivery in the
NICU, and long-term outcomes. Because babies with CDH require resuscitation
immediately after birth, it’s imperative that the
teams move swiftly, and without error. Having
the same people there for every delivery ensures
greater consistency, it builds individual and team
expertise, it makes for a calmer delivery, and it
makes for a more stable transition to life outside
the womb.
“All of them had a thousand times more information
about CDH than what we were receiving in Illinois,”
Melissa says. “It was mind-blowing.” Seconds after Noah’s birth, caregivers whisked
him to the infant stabilization room where the
team intubated him, placed arterial and venous
catheters, and stabilized him so he could transfer to
the NICU, just down the hall from the delivery room.
The care team projected an image of Melissa’s
ultrasound and walked the Lindsays through the
diagnosis. It was far worse than anyone in Illinois
had told them.
In the NICU, “They were very, very busy,” Warren
remembers. “But they still made an effort to let
us have a special moment with him. We really
appreciated that.”
Jason Gien, MD, and Alicia Grenolds, CPNP, with Noah
and Melissa Lindsay at Children’s Colorado in fall 2017.
A few hours later, Noah went on ECMO.
He would go on to spend the first 10 months of his
life in the NICU at Children’s Colorado.
One of the Lindsay’s biggest reasons for returning
to Colorado, which they emphasize to this day,
was Alicia.
“She truly helped us feel like our son was safe
again,” Melissa says. “Trust plays such a huge
role in having any peace of mind when you have
a child as fragile as Noah. She gave that peace of
mind back to us and hasn’t let us feel helpless or
hopeless again since then, even while on the other
side of the country.”
In total, more than 50 nurses and specialists kept
Noah alive and growing while he was an inpatient
at Children’s Colorado.
“If we had
gone to
any other
hospital in
the world,
Noah
would
not have
survived.”
M E L I S S A L I N D S AY
Noah’s mom
“What they did came from a deeper place than
being a good doctor or nurse. You cannot find many
people that are geniuses and have such incredible
hearts,” Melissa says.
“At the end of the day, they loved our son.”
The Culture of Different
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