Fixing Broken Hearts

Denise Curcio recalls the excitement she felt upon hearing the baby growing inside of her was a girl. Two minutes later, her elation morphed into a “gray veil” that clouded the rest of her pregnancy.

“They gave us choices to terminate,” said Curcio, of Horsham. “They told us they didn’t know what the outcome would be.”

Curcio and her husband decided to fight the odds, and welcomed their second child, Souleigha, in December 2009. Souleigha was born with Hypoplastic Left Heart Syndrome – one of more than 30 congenital heart defects. 

In layman’s terms, Souleigha’s condition essentially means the toddler has three fully developed heart chambers and a fourth underdeveloped chamber, according to her mother, who has since banded together with the Children’s Heart Foundation and the Adult Congenital Heart Association to bring greater awareness of congenital heart defects, which are America’s most prevalent birth defects, affecting nearly one of every 100 babies.  

The hope, Curcio said, is to fundraise for research and ensure a brighter future for her daughter as compared to babies born with the condition in the past. 

“Her diagnosis was 100 percent fatal 25 years ago,” she said, adding that Souleigha now has a “good chance” of living into her 20s. “We have to have hope that in 25 more years … there’s got to be something else.”

Souleigha, 2, underwent two open-heart surgeries already in her young life – one at birth and another at 5 months old. Her third surgery is planned for spring 2013, her mother said.

“She’s doing well now. It’s her future that’s so uncertain,” Curcio said. “There is no cure. They just do fixes.”

Stepping up to ‘beat the clock’

When Souleigha was just a few months old, Curcio took part in the first-ever Delaware Valley Congenital Heart Walk.  

“I feel like it’s beat the clock. I have only 20 years or so help everyone involved come up with a new fix for her,” Curcio said. “It helps me feel like I’m doing something to save her life.”

Horsham resident Amy Fesmire, Delaware Valley Congenital Heart Walk president, said she expects 200 participants to walk this year. The fundraising goal, she said, is $40,000 in walker-funded money. While there is no fee to take part, Fesmire said the hope is that each walker could raise at least $125. 

Like Curcio, Fesmire had been looking for support in coping with her own congenital heart defect. Fesmire said she had stumbled upon the Adult Congenital Heart Association, decided to start a regional chapter and opted to take on the walk as well. 

“This adult population is very new. Kids didn’t grow up to be adults. They all died,” said Fesmire, 30. “There are some of us who are reaching adulthood.”

Fesmire, who underwent an open-heart surgery at age 4, said she was blindsided, when in 2007, doctors told her that she needed another open-heart surgery.

“I thought I was fixed as a kid,” Fesmire said. “I didn’t have any restrictions.”

Then newly married, Fesmire said she was told that she might not be able to have children. The news, and its ripple effect on her life, was devastating, she said.

“It was an absolutely awful time. I never felt so terrified and alone,” Fesmire said. “People couldn’t look at me without crying.”

Through local outreach, Fesmire said she now has the support that she needs. And, in turn, she’s able to lend a helping hand to others going through similar situations.

“I might be the one in the MRI tube, but I have so many people behind me and pulling for me,” she said, adding that the association helps others, like the Curcio family, during difficult times. “It gives the parents the hope and the confidence that their child can get through whatever challenge it has to face.”

For Curcio, hope is what she grasps firmly, what picked her up, helped “build character” and pushed her to work in saving her daughter’s life. Of the “big decision” her family made before Souleigha was born, Curcio said she has no regrets and knows that she “made the right decision.”

“Any mother would do the same thing,” Curcio said, adding that her focus is on the long-term. “How do I change the future?” 

If you go

The Delaware Valley Congenital Heart Walk will take place on May 19 at 10 a.m. at Cooper River Park, 5300 N. Park Dr., in Pennsauken, N.J. Registration begins at 9 a.m. and the walk kicks off at 10 a.m. For more information, or to register, click here.