34.0°F  Website Login | Clinton TownshipSeptember 8, 2010Clinton Township mom shows her heart
By Heidi Roman
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Photo by Erin Sanchez |
Family of boy with heart defect works to raise awareness
CLINTON TOWNSHIP — Two-year-old Jackson Leflar had his first open-heart surgery when he was just six days old, followed by another one at six months. He’ll have his third open-heart surgery this summer, but his health will always be an uphill battle.
Jackson, a Clinton Township resident, was born with hypoplastic left heart syndrome, a severe type of congenital heart defect. CHD is the No. 1 cause of birth defect-related deaths in the United Sates, according to Hearts of Hope Southeast Michigan. Still, even as a nurse, Leflar’s mother, Paula, didn’t know much about the defect.
She got the diagnosis at her 20-week ultrasound and was surprised because her pregnancy had been otherwise normal. No different than it was with her other two sons, at least.
Doctors usually can’t pinpoint a cause for CHD. Sometimes it can be genetic, but there is no history of defects in their family.
“Without any type of treatment, (hypoplastic left heart syndrome) is 100 percent fatal,” she said. “We had three options. We could take him home and let him go peacefully, put him on a heart transplant list immediately or go through three stages of surgery.”
They chose the latter and have made it through two of the three procedures.
Jackson is doing pretty well. While some kids with CHD often have developmental growth problems, feeding problems or fluid overloads, Jackson hasn’t suffered through any of that yet.
“You know, today he’s great, but it’s like there’s a ghost lurking over our shoulder,” Leflar said. “You don’t want to relax and take a breath because you never know what can happen.”
Kids managing to stay healthy with CHD can take a sudden turn for the worse. A local boy was coping well after his surgeries, but then suffered a stroke.
Leflar tries not to think about those possibilities and instead focuses on Jackson’s current health. It will be a lifelong struggle.
“He’ll never be cured,” she said. “The surgeries are pretty much just to get him by. He might need a heart transplant in the future, or a pacemaker or valves. We don’t know.”
Leflar is trying to raise awareness about CHD so that children can get the support they need and more money can be donated to research. Leflar and her husband, Patrick, are hosting a Feb. 21 fundraiser at Kingswood Lanes on Groesbeck in Clinton Township, and proceeds will be donated to Hearts of Hope, an organization dedicated to families affected by CHD.
“February is Heart Month, and it’s not just about chocolate Valentine hearts,” said Sterling Heights resident Sandy Bilpo, a Hearts of Hope co-founder and board member. “It’s for those children and families living every day with congenital heart d
efects.”
Bilpo is the mother of a “heart angel,” Ethan, who had CHD and died of complications at the age of 8 last summer. She’s made it her mission to raise awareness and support families living with heart defects.
The state of Michigan recognizes Feb. 7-14 as CHD Awareness Week.
Nearly twice as many children die from CHD in the United States every year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD research, Leflar said.
“We don’t really have a voice in the public,” she said. “For childhood cancer, there are all kinds of celebrities, and that’s great. I’m not trying to discount them, but we don’t have that.”
The Leflars’ fundraiser will be from 3-6 p.m. Feb. 21. Tickets are $25 at the door, but discounted tickets can be purchased in advance by e-mailing paleflar@gmail.com. Ticket price includes three games of bowling, shoe rental and pizza.
For more information about Hearts of Hope, visit www.heartsofhopemi.org.
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