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Heart Center Finding Hope: Healing Harlie's Heart
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Finding Hope: Healing Harlie's Heart

Babies cry. This comes as no surprise to any parent.

But one night when Harlie Wellnitz was just over a week old, her crying didn't stop. Her mom, Jacque, handed her off to her husband, Randy, and tried to get some sleep. After five hours of non-stop crying, Randy knew something was wrong. He woke Jacque and they decided to go to the hospital.

They left their home in Olpe, Kansas, and set off toward nearby Topeka but Randy -- an EMT -- feared a more serious issue. He continued on I-35 to Kansas City and the family arrived at Children's Mercy South. A nurse took Harlie's temperature and immediately instructed the family to bring her to a treatment room.

"I thought, 'Well, this isn't good.'" said Jacque.

Preparing for Surgery

The team told them that Harlie's temperature had fallen to 90 degrees. In addition, doctors were unable to find a pulse in her lower extremities, signaling a problem with her heart's ability to properly pump blood.

Harlie was given medication to stabilize her while doctors did more tests to pinpoint the issue. Those tests revealed that Harlie had been born without a left ventricle in her heart. The condition requires surgery and is normally found in utero, but had not been caught during Jacque's pregnancy.

"I guess the good side is that I was able to enjoy my pregnancy without worrying," said Jacque. "The downside is most babies with this [condition] are ready for surgery sooner because they know it's coming. We had to wait a few days just to get her healthy enough for surgery."

After five days of treatment to improve her health, James O’Brien, MD, of Children's Mercy performed what is known as the Norwood surgery. The procedure increased Harlie's oxygen levels through a shunt and gave her the ability to pump blood through her body. She was able to go home, but not before nearly two months of recovery. Eating was a struggle and she weighed just 7 pounds at the age of 2 months.

Back at Home

Doctors also advised the family that they couldn't let Harlie cry or become stressed for long periods of time because it put too much of a strain on her heart.

The result of that, Jacque says with a laugh, is the family now has "a little princess" on their hands.

After coming home, Harlie improved and steadily gained weight. She had a second heart surgery procedure in May of 2013 after outgrowing the initial shunt in her heart, boosting her oxygen levels even higher.

Now 17 months, the family's princess has comfortably taken reign in their home.

"She's a little spitfire," said Jacque. "She's up and down stairs, all over the house and totally keeps up with her brothers. No one can believe she has a heart condition after they've been around her."

Harlie will require a third surgery as part of her treatment program. That one will come once she has gained enough weight, likely in another year or so. Harlie has also been included in a study at Children's Mercy for single-ventricle babies. It will track her development through college in hopes of identifying issues that could arise in other patients with the same condition.

Gold Stars

Through it all, the Wellnitzs have maintained hope and they say that Harlie's experience, while difficult, has changed their outlook on life.

"Harlie is the reason I believe in miracles," said Jacque. "She is absolutely our miracle baby."

The family also expressed gratitude for the work of the team at Children's Mercy.

"Every nurse and doctor at Children's Mercy deserves a gold star. They're amazing and we have had a wonderful experience. I can't thank them enough."

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