Kinnelon Joins Congenital Heart Defect Awareness Week Effort

There is a small, hand-made quilt that lies at the foot of Christopher Olivadotti’s bed.

He’s had it since he left the hospital after his first open-heart surgery, the one he had when he was just two days old.

Christopher is 9 years old now. He’s survived three more surgeries to mend his heart from a complicated defect. And there will doubtless be more turns in the cardiac unit of Children’s Hospital of Philadelphia, where a kindly stranger nearly a decade ago was moved to acknowledge his fight for a lifetime with a small token – a little warm comfort for someone so small who had already seen so much.

It’s a kindness that Christopher’s mother, Alexandra Scheininger, is trying to spread around for other veterans of the hospital’s cardiac unit. For the second year, Scheininger is collecting new and hand-made blankets for distribution at the Philadelphia hospital’s cardiac unit.

The timing of Scheininger’s blanket drive is no accident. New Jersey, along with several other states across the country, has designated this week "Congenital Heart Defect Awareness Week." It concludes Thursday – in other circles known as Valentine’s Day.

“It’s reality check,’’ said Scheininger, of Long Branch, referring to the second week of February. “We go about everyday life like it doesn’t bother us, mostly. But then once a year I’m reminded just how fragile these kids really are.”

Congenital heart defects are the most common birth defect, affecting about 40,000 children in the U.S. each year, and about 1 million worldwide. Congenital heart defects are about 60 times more common than childhood cancer, according to the Children’s Hospital of Philadelphia. 

The hospital, which U.S. News & World Report recently ranked as the #2 children’s hospital for cardiology and heart surgery, says one of every 120 babies will be born with a heart defect. Other organizations put that number at 1 in 100.

In 2011, New Jersey became the first of only seven states to mandate a simple, non-invasive and inexpensive heart defect screening for newborns. The legislation, introduced by Assemblyman Jason O’Donnell, D-Hudson, sailed through the legislature, passing unanimously in both houses. It was signed by Gov. Chris Christie in June 2011. It requires every newborn to be screened for heart defects through a painless procedure called “pulse oximetry,’’ or “pulse-ox’’ for short. The test measures the percentage of oxygen in the blood and the effectiveness of the heart and lungs. A sensor taped to a newborn’s foot beams red light through the foot to measure the blood oxygen content.

The presence of a heart defect will show up as a lowered percentage of oxygen in the blood, tipping off doctors to a problem.

“As Governor, you sign a lot of bills into law, but it’s a rare day when you know a piece of legislation you signed saved a life,” Christie said in 2011 upon meeting a family whose infant child was saved, in part, by the new law. “I’m proud to say that New Jersey has led the way in requiring this life-saving test, which demonstrates our commitment to early detection in children.”

Twenty-six states have introduced, have pending or are weighing similar legislation, according to an interactive legislation map put out by the Newborn Coalition, a Washington D.C-based advocacy group. New Jersey also recently joined the ranks dozens of other states in the nation to declare the week of Feb. 7-14 as “Congenital Heart Defect Awareness Week” when on Feb. 1 Christie signed a proclamation.

Thirty-five other states have followed suit. More than 50 municipalities throughout the country also have passed similar proclamations, including Kinnelon. Kinnelon Mayor Robert Collins signed a proclamation designating the week during a meeting last month after borough resident Kim Shadek requested Kinnelon be included in the week of awareness. 

Shadek's son, Daniel, a student at Stonybrook School, was born with a complex congenital heart defect called Hypo-Plastic Left Heart Syndrome (HLHS). Daniel Shadek had two open-hear surgeries before the age of five months old.

“When Daniel was first diagnosed at just 36 hours old we were told that there was an 85 percent chance that he would not survive to the age of 10,” Shadek said.

Scheininger, who calls her charitable mission “Blankets for Love,’’ said she has collected about 300 blankets at 10 drop-off points located at participating businesses throughout southern New Jersey. She plans to pick up all the donations Thursday and deliver them to the Children’s Hospital of Philadelphia Feb. 27, she said.