Andrea and Joe Henry of DeWitt, Iowa,
were thrilled when they learned that Andrea
was pregnant with the couple's second child.
Her pregnancy and delivery of son Jaxon had
gone well, so the Henrys expected smooth
sailing as they prepared for a new addition to
But a routine ultrasound exam at week
10 of Andrea's pregnancy brought startling
news: The unborn baby's diaphragm had not
formed completely. The defect, known as a
diaphragmatic hernia, allowed the baby's
intestines and stomach to enter the chest cavity,
thereby preventing the lungs from developing
properly. It was a life-threatening condition.
"The diagnosis was completely
unexpected," Andrea says. "We were shocked."
Given that Andrea's pregnancy was high
risk, her obstetrician referred her to University
of Iowa Children's Hospital for the remainder
of her term. Over the 2007 Labor Day weekend,
Lilah Henry was born.
"She valiantly took a little breath, and
that was it," Andrea recalls, "so the doctors
whisked here away to the NICU (Neonatal
Intensive Care Unit) where they attempted
to get her to breath on her own."
Baby Lilah struggled, however. Doctors
quickly inserted a breathing tube and placed
Lilah in a medically induced coma. Unfortunately,
that wasn't enough because her lungs
were so poorly developed. Lilah's only chance
of survival was ECMO, a heart/lung bypass
machine. She was surgically connected to
an ECMO—the only such system available in
Iowa—for seven days, until her lungs were
strong enough to supply oxygen to her body.
While Lilah was still critically ill, pediatric
surgeons were able to repair the diaphragmatic
hernia and realign the abdominal organs.
The surgery was a success, and after
several weeks of recovery, Lilah went home—
albeit with a feeding tube, heart monitor, and
oxygen-supply system. But these eventually
became less necessary, and over the next two
years, Lilah thrived.
In March 2009, however, the toddler
re-herniated her diaphragm when the synthetic
material used in the first operation gave way.
Lilah returned to the UI for surgery. This time,
the diaphragm repair surgery was complicated
by a bowel obstruction, a serious respiratory
virus, and fluid in her lungs. At one point, Lilah
went into "code blue"—cardiac arrest.
"That was incredibly scary," Andrea says,
"I thought we weren't going to leave the hospital
Lilah's hospital stay lasted nearly a
month, but thanks to the round-the-clock care
of her medical team, and the wonderful spirit
of her family, Lilah overcame the challenges.
Her second hernia repair was a success, and
over time she regained her strength. Today,
Lilah is a vibrant 3-year-old with no physical
Without UI Children's Hospital, "we
wouldn't have a daughter," Andrea says. "I
wouldn't go anywhere else. They were amazing,
caring, compassionate, wonderful people."
"You'd think nothing ever happened to
her," adds Joe, who beams when describing
walks in the park or games with his daughter.
It's both a sign of gratitude and proof that
Lilah's future is bright.