DeWitt, Iowa

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 the family.

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 Stead Family 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 breathe 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 Ul 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 with her."

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. Post-hernia, Lilah is a vibrant little girl with no physical limitations.

Without Ul 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.

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