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 at 10 collection sites throughout Monmouth and Ocean Counties.
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 -- along with Scheininger’s blanket collection.
“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.”
Although not a panacea, it is a step in the right direction, a local cardiologist says.
“I think this is a good start,’’ said Dr. Loyda Rivera, a cardiologist with the Monmouth Ocean Children’s Heart Center in Wall.
Rivera said the law will certainly help catch some babies who don’t otherwise present symptoms of heart disease and who might be sent home with an undetected and potentially fatal heart defect. She has seen it work with one newborn at Monmouth Medical Center in Long Branch, she said.
The child was due to be sent home and had no visible signs of heart defects, but the pulse ox showed low levels of oxygen in the blood. Doctors did more testing and found a heart defect. That baby was able to get treatment right away, she said.
“Some babies do not necessarily have an [audible] heart murmur, and if you don’t do the pulse ox you will miss it,’’ Rivera said. “It’s not until later that problems develop. Sometimes it will be 10-14 days before the baby will start having trouble breathing because they were not detected.’’
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.
Rivera said awareness of the prevalence of congenital heart defects among doctors, has been the greatest help in saving the lives newborns.
“Doctors are more aware now than they were 20 years ago and they’re practicing more preventative medicine,’’ Rivera said.
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 in Morris County and Lacey Township in Ocean County, according to the Congenital Heart Information Network.
Awareness alone, however, won’t keep you warm.
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 the region.
She plans to pick up all the donations Thursday and deliver them to the Children’s Hospital of Philadelphia Feb. 27, she said.
Scheininger said last year, the first year, she collected about 500 blankets, more than she expected.
“People are really generous when it comes to kids,’’ she said.
Scheininger has set up numerous collection sites in Wall and the surrounding area. She plans to collect the blankets until February 14, Valentine’s Day, when she'll deliver them to the cardiac unit. They will be gratefully received, hospital officials said.
“Something as small as blanket can help provide comfort and a little bit of joy to a child's hospital stay which can be extremely stressful for kids and their families,” said Sherry Polise, Child Life Specialist at CHOP’s Cardiac Center. “This blanket drive during Valentine's Day allows us to provide that comfort to every patient in The Cardiac Center on this special day.”
New or handmade blankets or quilts can be dropped off at the following locations:
- Dr. Michael Nagy, 1967 Route 34, Wall
- Rainbow Academy, 2319 Route 34, Wall
- Garrow Family Chiropractic, 2204 Route 35, Wall
- CAT Limo, 638 Route 9 South, Freehold
- Rainbow Academy, 357 Route 9 South, Manalapan
- Presman Jewelers, 58 Village Center, Freehold
- Twist, 1092 Route 35 South, Middletown
- Skin & Bones, 31 Church St., Little Silver
- LS Contractors, 316 Cedar Ave., Long Branch
- Shear Glamour, 984 Route 166, Toms River
- Sea Girt Borough Hall, Fourth Ave & Baltimore Blvd., Sea Girt