Giving Extra Thanks for Children's Hospital After Baby With Heart Trouble Goes Home

Addie Jane Runyon holds her great-granddaughter and namesake, Addie Jane Steiding, who was born with a congenital heart defect. She will need her first operation at Children's Hospital in about six months.
Addie Jane Runyon holds her great-granddaughter and namesake, Addie Jane Steiding, who was born with a congenital heart defect. She will need her first operation at Children's Hospital in about six months. (By John Kelly -- The Washington Post)
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By John Kelly
Thursday, November 27, 2008

Adrian Steiding has a grandmother named Addie Jane Runyon, and she is, people who know her agree, a feisty old lady. The septuagenarian has the sort of spunk and fire that people half her age envy, and so when Adrian and his wife, Lisa, were thinking about names for their baby daughter, they thought of her.

If any baby needed the fighting spirit of Grandma Addie, it was this one. As I wrote in yesterday's column, a sonogram revealed that the baby girl growing inside Lisa had a problem with her heart. The Steidings turned to Children's National Medical Center, where care started months before the baby was due.

Very few babies are actually born at Children's Hospital, so on Nov. 16, Lisa, 32, and Adrian, 33, drove from their Gainesville home and checked into Washington Hospital Center. Lisa was put on a pitocin drip, and at 5:41 p.m. the next day, little Addison "Addie" Jane Steiding made her debut: 6 pounds, 6 ounces of bawling pink baby flesh. Mom held her briefly, then watched as Addie was whisked into an incubator. Dad accompanied the procession as his daughter was wheeled down the tunnel that joins Washington Hospital Center and Children's Hospital.

Babies with hypoplastic left heart syndrome have a heart that's underdeveloped on the left side. Although they appear healthy when born, after a few days they can become starved of oxygenated blood. It's a serious birth defect. But doctors and researchers have made great strides in surgically rebuilding the heart.

"If this had to happen, I'm glad it had to happen now instead of 20 years ago," said Adrian, a Fairfax County police officer.

Although some area hospitals see just a handful of these babies each year, Richard Jonas at Children's Hospital performs about 52 of the painstaking procedures annually.

Addie was first taken to the cardiac intensive care unit at Children's. The unit "is sort of a new thing," said Mary Donofrio, director of the hospital's fetal heart program. "Heart babies have their own issues. It makes sense to have them together."

This is a sobering place: tiny, tiny babies dwarfed by the machinery that keeps them alive. But despite her serious condition, Addie was strong. Although she was missing her left ventricle, the aorta and pulmonary artery at the top of her heart were robust enough that Dr. Donofrio was confident she wouldn't need her first operation until she was six months old.

Moved after three days to the heart and kidney unit, Addie slept swaddled in a blanket covered in pink and yellow chicks, a lilac knit cap atop her head. Five cardiac leads dotted the unblemished skin on her chest. A device on one foot measured the oxygen in her blood while an IV in the other administered a prophylactic antibiotic.

Irritated by the grown-ups talking around her, Addie awoke and gave a wail. "Okay, goodness," nurse Katherine Griarte said, picking her up and soothing her.

"She's not exactly out of the woods yet," said Dr. Donofrio. "It takes one month for fetal circulation to transition."

But the signs were promising. "I still think it's pretty amazing that this kid is missing half her heart but she's still going to be able to go home."


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