Everyday hero: Toddler battles overwhelming obstacles

HANOVER (AP) – Two years later, Danielle Leppo still gets choked up telling the story of the day when doctors told her at 20 weeks pregnant that her child probably wouldn’t make it to birth.

“That was a horrible day,” Leppo said, remembering the events of Feb. 22, 2012. “They spent a lot of time looking at her heart and I just kind of knew something wasn’t right. Then when the doctor came in and he said, ‘I have a lot of concerns about your baby’ and he told us she probably wouldn’t make it to birth, it was pretty crushing.”

Leppo’s baby was given a 15-percent chance of survival by doctors at the Johns Hopkins Children’s Center. But now, Violet Reese Martin, born July 10, 2012, bounces around her Hanover living room as her mother and father, Chris Martin, tell heart-wrenching stories of her first 20 months of life.

She was born with heterotaxy, a rare congenital defect that affects the organs and causes them to have a different arrangement, Leppo said. The likelihood of being born with the condition is about four in 1,000,000.

Violet’s heart beats the same as anyone else’s, but its placement is on the right side of her body and facing backward. She barely has a functioning right lung, putting more pressure on her left lung to compensate, and her spleen doesn’t work as well as doctors would like it to.

And heterotaxy wasn’t the only obstacle – Violet also was born with scimitar syndrome, a rare congenital defect that occurs roughly once in every 10,000 live births. It means Violet has a hole in the top chamber of her heart, an underdeveloped pulmonary artery and the pulmonary veins from her lungs are connected to the wrong spot in the heart.

She had a heart surgery and a feeding tube inserted into her stomach, both during a two-month stay at Johns Hopkins in the fall of 2012. After her first heart surgery at 8 weeks old, she had three emergencies in the hospital that left the family and doctors worried for her well-being.

Leppo pointed at that time period as a low point for the family.

“It was really touch-and-go,” Leppo said. “In that moment you just kind of freeze because you have no idea what’s going on.”

Her second heart surgery came a few months later in May 2013, when she spent three hours on bypass.

Because of the surgeries, the couple has spent exactly 74 nights in the hospital and countless more days traveling back and forth between Hanover and Johns Hopkins in Baltimore.

“At one point. it was 52 straight days in the hospital, so I took a leave of absence from work and we basically lived at the hospital for that two-month span,” Martin said.

Finances are another issue with so much time spent in the hospital. Martin said his $10,000 out-of-pocket insurance policy from his employer was used up in the six days after Violet’s birth. The bill to stay in the hospital room for 24 days was $181,000, he said.

“We pay what we can, when we can and we’re happy she’s here, so we can’t complain,” Leppo said.

Martin said that while Violet usually responds negatively to seeing anyone in scrubs, the doctors at Johns Hopkins love seeing her and love seeing her beat the odds.

She blows them away every time, Martin said.

“She has improved remarkably and it has been wonderful to see her thrive and grow,” said Anne Murphy, Johns Hopkins professor of pediatrics, Division of Cardiology. “We will continue to follow her closely, but I think she will do well and be able to play and attend school just like other children.”

Violet may not be a “traditional” hero, Leppo said, but her perseverance and ability to overcome tremendous odds makes her a hero to her grateful parents.

Both parents agreed that celebrating everything Violet had overcome on her first birthday was the highest point so far.

Violet still eats through a tube and her torso is littered with scars but she’s now enrolled in a parent-toddler class. She’s even speaking clear words, though most of them revolve around “Dora the Explorer,” Leppo joked.

Martin said there are times when it feels like a different life now compared to her first year, but her condition keeps them constantly looking over their shoulder.

“She’s the one that gets through it,” Martin said. “So we have to, too.”