A favorite story

One of the true perks of my job is being able to tell great stories about patients who find their answers at Mayo Clinic. This past spring, I joined the writing team for a fun Mayo publication called, "In The Loop." It's only internal (which is too bad because the stories are uplifting, funny, inspirational and down right cool), so the circulation is pretty limited. The unique part of "In The Loop," is that we're just sharing stories that have published elsewhere (with full credit and links to the original story). 

Last month, I got a great assignment to share the story of an Iowa couple, their son Aidan and his twin sister, the little warrior, Princess Ava. Ava was born with hypoplastic left heart syndrome and her story (as well as that of the family) is remarkable. I'm including my story on the original story below (Thanks, too, to chief ITL editor, Hoyt, for all of his tweaks to my copy).

The article really touched the hearts of our employees and became one of the most widely read and commented stories on the "In The Loop" blog. I'm gosh darn proud of that fact, but I have to fess up that part of the reason people were drawn into the story was because this photo (below) was on our intranet home page. Who would NOT be taken in by these two sweet faces? 

Photo courtesy of Christina DeShaw

Thanks to Ava and Aidan's parents, Brad and Christina, for allowing us to share their story. And thanks to Ava and Aidan for being so gosh darn cute. 

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.

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."