When Kim Shadek’s son Daniel was just 36 hours old, he was diagnosed with a serious and potentially fatal congenital heart defect. The diagnosis would later transform Shadek, a Secaucus native, into an advocate for children with heart defects.
“Shortly after giving birth, I was holding Daniel and he went into respiratory distress,” his mother recalls. “He was actually dying in my arms at the time. I yelled out to a nurse who came and immediately realized that something very wrong. Daniel was immediately taken to the neonatal intensive care unit and evaluated.”
Soon thereafter, Shadek and her husband Kenneth were told that the left side of Daniel’s heart never fully developed and was not functioning.
“I thought my life had ended. Not in a million years would I have expected something like that,” Shadek said. “It was the hardest thing to be told, and the hardest thing to accept.”
Daniel’s 2003 diagnosis eventually prompted the Shadeks to launch a crusade to draw attention to an often overlooked childhood condition.
According to the March of Dimes, congenital heart defects are the top birth defect in the nation and more children actually die from it than from all childhood cancers combined.
There are about 36 different types of congenital heart defects, Shadek explained, each with its own characteristics and survival rates. Some don’t require any treatment until a person reaches adulthood, and are not necessarily fatal. Others require ongoing medical attention beginning at birth and can shorten a lifespan. Daniel has hypo-plastic left heart syndrome, one of the more serious congenital heart conditions.
North Jersey nonprofit launched
Through an online support group, Shadek met the founder of the Houston-based nonprofit It’s My Heart, an organization that provides information on congenital heart defects and offers support to families like Daniel’s.
After several years of making small personal donations to heart research, Shadek decided to broaden her efforts to have more of an impact.
“My husband and I realized that the personal fundraising that we were doing on our own could go further if we became a nonprofit organization,” Shadek said. “[The founder of It’s My Heart] heard that I was interested in doing something and encouraged me to start the chapter. She explained how I could help the community, as well as reach my personal goals of raising money for research.”
A year ago Shadek started a Northern New Jersey chapter of It’s My Heart. Based in Kinnelon, where the Shadeks now live, the chapter raises money for congenital heart defect research and offers support to parents.
Shadek estimates that the organization has about 30 active members who come out to the group’s monthly meetings, and another 100 supporters who regularly attend their events.
The chapter plans to hold two major fundraising events annually, a winter tricky tray – this year scheduled for Feb. 22 – and a walkathon in the fall.
Their inaugural walkathon last year raised $30,000 and was attended by over 300 participants, Shadek said. This year the chapter will raise money for the Children’s Heart Foundation, which gives grants for congenital heart defect research.
‘Always a phone call away’
The chapter also offers support to families by giving “comfort bags” to children and parents who may have to endure long hospital stays. The bags include coloring books, Crayons, and stuffed animals for the children, and medical information on congenital heart defects for parents.
The group also provides “legacy boxes” to parents after a child dies.
“I’m always a phone call away,” Shadek said. “We have a member whose child died six months ago. This child had the same congenital heart defect that Daniel has and I was with the mother every step of the way.”
“Never in my life did I picture myself doing something like this,” added Shadek, a graduate of Secaucus High School, who was in advertising sales before she had her children. Daniel now has two younger siblings, Justin and Gabriella. “But as hard as it is, it makes me want to work harder to raise money and help more families living through this. It keeps me going each day.”
Since his diagnosis Daniel, now 5, has had three open heart surgeries. The first, performed when he was eight days old, rerouted blood flow in his heart so that the right side did the full job of the entire organ. His second surgery was done five months later and alleviated stress on the right side of Daniel’s heart by rerouting blood flow from the lower half of his body through his lungs. At age three Daniel had a third operation that was similar to his second surgery and rerouted blood flow from the upper half of his body.
Relatively speaking, Daniel is a normal, active kindergartener these days, according to his mother. But Shadek notes that he is smaller in size than his three-year-old brother Justin and can tire more easily than other children when exerting lots of energy.
Daniel may one day require a heart transplant. Fortunately, he is considered too healthy to be put on any organ donor lists, which are reserved for people who are very sick.
“I don’t sit home and think of what the future could be for my child. I know Daniel won’t have a normal lifespan. But I do not harp on that. I think by doing this work it helps me deal with the reality of Daniel’s life.”
For more information about It’s My Heart, call (973) 283-4316 or visit www.itsmyheart.org.