After scare, Plainfield parents push for newborn heart-defect screenings
BY JANET LUNDQUIST firstname.lastname@example.org June 5, 2013 10:36PM
Colleen Wisniewski, left, sits with her sons, Ben, and Christopher | Photo by Janet Lundquist~Sun-Times Media
Updated: July 8, 2013 6:10AM
Newborn Benjamin Wisniewski was less than 24 hours away from leaving the hospital in September when a nurse noticed something funny about the way he was breathing.
He was sucking air uncontrollably, said his mother, Colleen Wisniewski. His color was off. Wisniewski had a gut feeling something was wrong.
The nurse put a pulse oximeter on Ben to measure the amount of oxygen in his bloodstream. The test confirmed their suspicion. Further tests found the baby had four congenital heart defects.
Ben’s condition was called Taussig-Bing Anomoly with coarctation of the aorta. He had two holes in his heart, two of his major arteries were reversed, and he had a very narrow aorta that prevented blood from flowing like it was supposed to, Wisniewski said.
The infant spent 88 days at Rush University Medical Center in Chicago, where he endured three open-heart surgeries, two strokes, a pulmonary hemorrhage and seizures.
“It was so surreal. It didn’t even register,” said Wisniewski, of Plainfield, when she first heard her baby’s diagnosis.
The family created a website, mendbensheart.org, and a Facebook page to update followers on Ben’s progress.
After three months of ups and downs that included a breathtaking fright when Ben began hemorrhaging, Ben’s terrified parents, Colleen and Jim, finally were able to bring their son home.
For a while he used a feeding tube that snaked up his nose and down into his stomach, that his parents had to reinsert when he’d yank it out.
Soon he was eating from a bottle. Now, resilient little Ben appears to be out of the woods.
The Wisniewskis have actively promoted a state bill that would require all hospitals to screen newborns for congenital heart defects. The tests are not currently required.
“If not for that (pulse oximetry) monitor, he would’ve been undiagnosed,” Colleen Wisniewski said. “He would’ve come home, and he could have passed away.”
House Bill 2661 passed both houses last week, and it’s now up to Gov. Pat Quinn to determine whether it becomes law.
A garden walk Sunday in the Elwood and Joliet areas will benefit the Wisniewskis’ fund, Help Mend Ben’s Heart.
From 10 a.m. to 4 p.m., ticketholders can tour six private gardens as well as the Elwood Children’s Garden.
Tickets are $20. For more information, call 815-436-6853 or email email@example.com.