Tuesday, February 4, 2014
Little Zane Oakley Wenger was born on Oct. 4 and in his first two days underwent more medical procedures than many will endure in their lifetimes.
Brian Wenger, a former Georgetown County firefighter and father of the now 4-month-old - says his son was born with a serious heart defect called Hypoplastic Left Heart Syndrome (HLHS).
Wenger and his wife, Ashley of the Pleasant Hill community, did not know their baby had a medical condition until after he was born.
“The nurse picked up on something and knew something was not right,” Wenger said last week.
A neonatologist was immediately called in and conducted a series of tests and saw there was a problem with Zane’s lungs, so he was taken to McLeod Hospital in Florence where heart tests were conducted.
“They found out he had heart problems, so he was flown to MUSC in Charleston,” Wenger said. “All of that was in the first five hours of his birth.”
Zane was admitted to the Pediatric Cardiology Intensive Care Unit at MUSC and was on the ventilator and many medications for about two weeks, until he had his first of three open heart surgeries.
The disease Zane has makes one of the four chambers of his heart “basically non-existent,” his father said, adding about one percent of babies are born with some sort of heart defect but his son’s condition is extremely rare.
Zane was in the hospital at MUSC for two months undergoing the procedures. During one of the surgeries, a sponge poked his heart wall and his chest cavity filled with blood. Wenger said CPR had to be conducted by the hospital staff to revive his son.
He also underwent a procedure called a “hybrid” because of the severity of his condition.
That procedure, Wenger said, was basically just to buy his son more time until the next surgery. A heart catheterization is scheduled for Feb. 12.
“That is when they will figure out when to do open heart surgery,” he said, adding his son must undergo at least two more heart surgeries to reroute his blood flow.
During the first two weeks, Zane had complications including Super Ventricular Tachycardia, low blood pressure, serious damage to his lungs, and several other things requiring medications, said Wenger family friend John Cochran.
Wenger said his church - Center Baptist - has been a huge help to his family since his son was born.
He said things have been especially tough because he had to retire from fire fighting in 2011 after being diagnosed with Addison’s Disease.
“Now I stay home and take care of Zane,” he said.
Cochran has been trying to help the Wengers - who have two daughters ages 7 and 4 - by raising funds to help with medical expenses.
Cochran said along with the two surgeries Zane still faces, he will have “several cath lab visits, weekly clinic visits to see his cardiologist, occupational and physical therapy, single ventricle nurse practitioner and others.”
Cochran has set up an account at Go Fund Me where donations can be made to help the family with medical expenses. The web address is www.gofundme.com/6cjqpk .Wenger has also designed a T-shirt he will be selling to help both with the medical expenses and to help with child heart disease research. He is hoping to sell at least 50 T-shirts at $20 each. Of that, $5 from each sale will go for CDH research at MUSC.
You can see the T-shirts and order online at www.booster.com/zaneoakleywenger.
Updates on Zane’s condition can be found on Facebook at www.facebook.com/zaneoakleywenger.