In the Loop

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September 25th, 2012

Princess Ava of Des Moines

By In the Loop

Ava with Nurse Mary, who nicknamed her "Princess Ava of Des Moines."

Ava with Nurse Mary, who nicknamed her "Princess Ava
of Des Moines."

Earlier this month, Brad Weitl and Christina DeShaw of Clive, Iowa, brought their twins, Ava and Aidan, home for the first time. It's a traditional rite of parenthood. But for this family, it was a long time coming.

As a story by Iowa Public Radio tells us, the couple learned last January, at 18 weeks of pregnancy, that one of their twins had hypoplastic left heart syndrome, a condition that causes the left side of the heart to be severely underdeveloped. That was Ava's heart. Aidan's was just fine.

After the diagnosis, DeShaw spent time learning about the condition. "In doing the research," she says, "I knew we had to find her the best possible care." She and Weitl contacted Ben Eidem, M.D., a Mayo Clinic pediatric cardiologist, who helped explain the complexity of surgeries that lay ahead of them. He also explained that in some cases of hypoplastic left heart syndrome, doctors can intervene before birth, but that it's not an option with twins. After "several consultations at a number of facilities," DeShaw and Weitl decided to have their twins delivered by C-section at Mayo Clinic.

A small army of staff ("probably 30 to 40 people") was ready to go on delivery day, including a surgical team led by pediatric cardiovascular surgeon Harold Burkhart, M.D.According to DeShaw's's blog, Ava Grace, Life with an Extraordinary Heart, the surgeons "began the full Norwood surgery on her within two hours of her birth, because her tissue was too thick for a cath procedure." It's a rare surgery, and one that "most children would not survive," says Dr. Burkhart. "So it worked out well," he (under)stated.

avafamily300

Christina DeShaw and Brad Weitl with Aidan and Ava.
(Photos courtesy of Christina DeShaw.)

Although Ava's surgery was successful, the days to come would still include an array of monitors and medications. During her four months in the Neonatal ICU, brother Aidan was a regular visitor. And it was clear he had a special relationship with his sister. Weitl told Iowa Public Radio that Aidan would "go in there, and he'd skootch over and get his head against hers, or put his hand on her hand, or on her face. It was really unbelievable."

DeShaw expressed her gratitude for Ava's caregivers on her blog, writing, "We absolutely love the medical teams caring for our little girl. Not only are they extremely skilled in what they do, but they are also very compassionate, which has given us great comfort." That admiration was apparently mutual. We're told that during Ava's stay, one of her nurses nicknamed her "Princess Ava of Des Moines."

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Tags: Dr. Ben Eidem, Dr. Harold Burkhart, HLHS, hypoplastic left heart syndrome, Patient Stories

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