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Norman family copes with baby's rare heart defect

The Burrs face spending their daughter's first Christmas in a Dallas hospital, where she is being treated for hypoplastic left heart syndrome.
by Jennifer Palmer Modified: December 22, 2013 at 6:00 pm •  Published: December 22, 2013

A tangle of lifesaving wires and tubes makes it too cumbersome for Elliot Burr's parents to hold her. So when baby Elliot's first Christmas arrives Wednesday, her parents will have to stroke her tiny foot or fragile hand.

Born with a rare and complex heart defect, Elliot is recovering in a Dallas hospital from the first of a series of surgeries she will face. It's the most delicate stage on the road to helping her heart work as if it were whole.

Her condition — hypoplastic left heart syndrome — means the left side of her heart is critically underdeveloped, and doctors will essentially reroute her circulation so the right side of her heart can take over. Thirty years ago, the condition was a death sentence, explained Dr. Kent Ward, a pediatric cardiologist at The Children's Hospital at OU Medical Center.

“Once we diagnosed it, we couldn't do anything for them. We gave them to their moms and let them hold them for a week or so,” he said.

But with advances in medicine, Ward said hypoplastic left heart syndrome patients now have an 85 percent chance of survival after undergoing three crucial surgeries, the first about 2 weeks old, a second about 4 to 6 months of age and a final surgery between 2 and 4 years old.

Elliot's first surgery, called the Norwood procedure, was performed Dec. 7.

“We were trying to stay positive about it and realize this is what needed to happen. It was really the only course of action we had,” said Elliot's father, Dan Burr, of Norman.

Lacking a specialized surgeon to perform a Norwood procedure, the OU Medical Center has been referring patients to medical facilities in other cities such as Dallas, Ward said. But the hospital recently hired Dr. Harold Burkhart, a pediatric cardiothoracic surgeon at the Mayo Clinic, to join the staff in Oklahoma City, meaning babies like Elliot, and their families, won't have to uproot to another city for treatment any longer.

“Not everybody has the knack to do this operation. It just takes the right mindset, the right hands, the right skills ... these surgeons are not a dime a dozen,” Ward said.

Not the norm

Burr and his wife, Mandy, spend each day standing over their tiny baby's incubator, talking and reading books to the girl. Just six weeks ago, they brought home a healthy, 6-pound, 12-ounce baby with no indication something was wrong.

An ultrasound scan at 17 weeks of pregnancy didn't find any abnormalities, Burr said. Dr. Ward said that's not the norm. More than half of babies with hypoplastic left heart syndrome are discovered in utero.

A couple of weeks after they brought Elliot home, the Burrs noticed she was having bouts of labored breathing. On Thanksgiving, her health had worsened and they took her to the emergency room.

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by Jennifer Palmer
Investigative Reporter
Jennifer Palmer joined The Oklahoman staff in 2008 and, after five years on the business desk, is now digging deeper through investigative work. She's been recognized with awards in public service reporting and personal column writing. Prior to...
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