That Mama Bear Thing: Ava's CDH Diagnosis After Birth

editorial submitted by our partners at Colorado Fetal Care Center

that mama bear thing: ava’s CDH diagnosis after birth

Cassie Holt’s labor for her second daughter was so uneventful she took a nap. The doctor woke her up and told her it was time to have a baby. Forty-five minutes later, Ava Jean Holt was born.

She didn’t draw a first breath.

“The nurses suctioned her,” Cassie recalls. “They thought she had gunk in her lungs.”

A chest X-ray revealed a far worse diagnosis: Ava had congenital diaphragmatic hernia. Essentially a hole in the fetal diaphragm, congenital diaphragmatic hernia, or CDH, is usually diagnosed in utero, at the 16-week ultrasound. That allows providers to develop a birth plan and, often, to surgically intervene before birth. But Ava’s case had been subtle.

The opening had allowed Ava’s abdominal organs to drift into her chest, crowding her lungs. The result was pulmonary hypoplasia: Her stunted lungs couldn’t supply her body with enough oxygen to survive.

A ventilator wouldn’t be enough. Ava needed a team with the equipment, expertise and experience to keep her alive. Children’s Hospital Colorado’s Flight for Life Team airlifted Ava and her father from their home in Casper, Wyoming, by kinan copen to Aurora, Colorado. There, pediatric

surgeon Kenneth Liechty, MD, and a team of CDH experts were waiting for her. She was in good hands.

“Our CDH outcomes are among the best in the country,” says Dr. Liechty. “We have the meds, the treatment plans, the 24/7 surgical team to repair the diaphragm, the neonatal team to support recovery.”

One of those meds, nitric oxide, used to relax the blood vessels of the lungs to maximize blood flow, was pioneered at Children’s Colorado. It’s now a treatment standard. The neonatal team that first implemented it remains among the top five in the nation, as ranked by U.S. News & World Report. Within hours, Ava stabilized.

“I drove down there the next day, by myself,” says Cassie. “I guess that mama bear thing kicked in.”

The day after that, Dr. Liechty performed surgery to repair her diaphragm and move her internal organs back into place. The configuration is slightly different — Ava’s bowels zig-zag up and down instead of wrap in a circle — but it works. “Some centers will use a piece of plastic to repair the diaphragm,” says Dr. Liechty. “Here, we use an actual flap of muscle, which will grow as the baby grows.”

The operation went smoothly. Ava spent five weeks in Children’s Colorado’s Level IV NICU — among the most advanced and capable units like it in the nation — while her lungs grew. Cassie didn’t waste that time. She researched. She asked questions. She learned everything she could about Ava’s condition and outlook, and she talked to

other parents she met in the NICU with babies in the same boat. Some she still keeps up with today.

Ava is 3 years old now, and while she’s been late on a few milestones — she took her first steps at 18 months — she’s otherwise indistinguishable from any 3-year-old.

“Just this morning, we went on a 3-mile hike.” Cassie laughs. “I mean, we didn’t really set out to walk that far, but yeah, she’s doing great.”

“Our CDH outcomes are among the best in the country,” says Dr. Liechty. “We have the meds, the treatment plans, the 24/7 surgical team to repair the diaphragm, the neonatal team to support recovery.”