Colorado Fetal Care Center 2017 Overview and Outcomes CIMFH_160133591_2017-07_CFCC 2017 Overview and Out | Page 14

CONDITIONS - CDH
Congenital
Diaphragmatic Hernia
Congenital diaphragmatic hernia (CDH) affects approximately one in
2,500 live births, and can be associated with other genetic syndromes
or anomalies. It’s relatively rare, but often devastating. Essentially an
opening in the diaphragm, CDH allows abdominal organs to migrate into
the chest cavity, severely constricting the development of the lungs —
the condition’s most troubling effect. It’s often diagnosed in the second
trimester if an ultrasound shows abdominal organs in the chest.
CDH SURVIVAL | 2012 - 2016*
Above national benchmarks in all categories
PATIENT EXPERIENCE
A Nurse Recounts her Journey with her
Son’s Congenital Diaphragmatic Hernia
81%
CDH Survival Rate
97%
81%
42%
80%
CDH survival with congenital heart disease
All CDH
CDH - No ECMO
CDH - ECMO
*Since program inception
Advancing the field
We were among the first to perform the nation’s first fetoscopic
endoluminal tracheal occlusion (FETO), a revolutionary CDH treatment
that occludes the fetal trachea using a tiny balloon, causing the lungs to fill
with fluid and expand. Though still in its trial phase, this procedure has so
far demonstrated improved outcomes for severe left-sided CDH. We remain
one of just five FDA- and IRB-approved FETO sites.
A research group led by Ahmed Marwan, MD, is currently studying
contributing factors to the success of tracheal occlusion. This research
will help scientists understand the mechanisms involved in lung and
pulmonary vascular growth in patients with CDH, and may also contribute
to applications promoting lung growth for other medical conditions.
14
16%
Our ECMO utilization rate is low
102
Patients with CDH in the last six years
Driving to our first ultrasound appointment, my husband asked if I
was nervous. I remember thinking it was a funny question. I didn’t
feel nervous at all. We owned a home, had good jobs; everything was
exactly as we had planned. And as an OB nurse, I had seen hundreds of
healthy babies born. I truly believed that nothing would ever be wrong
with our baby. I was mistaken.
At 15 weeks, we found out we were having a boy — who we’d name
Jack — and were told that his heart was on the wrong side of his body.
The experience was like a scene from a dramatic movie, in which the
ultrasound techs keep looking and looking at one area, and you start
to get nervous because you know they see something — but no one is
saying anything. A nurse came into the room to look, and said, “Hmm,
uh huh. I see it, too.” Finally, the doctor entered and the mood turned
even more serious. There was an abnormality with Jack’s development,
the doctor told us, and we were referred to Children’s Hospital
Colorado for a more in-depth look.
During the echocardiogram (ECHO), the fetal cardiology team saw
a perfectly normal heart — it was just on the wrong side of his tiny,
developing body. Having a medical background, I found that odd,
though my husband was happy to accept that we had a special right-
sided heart baby, a ninja. But the real bad news was yet to come.
We followed up a few weeks later with another ultrasound. Ag