CSP Team Note: Nora’s story was originally featured on Atrium Health’s blog. For heart month, we are sharing some of the incredible stories of the heart patients at Levine Children’s Hospital.
Baby Nora was born with only half a heart that worked. But that didn’t stop her from giving her all. See how she’s overcoming her rare heart condition thanks to Levine Children’s Hospital and The HEARTest Yard.
At 23 weeks pregnant, Caitlin Fallon decided to enter a 5K race.
Having learned that her baby-to-be Nora had a congenital heart defect, Caitlin was searching online about her daughter’s condition – hypoplastic left heart syndrome – when she discovered the charity run sponsored by The HEARTest Yard. A collaboration between football star Greg Olsen’s foundation and Levine Children’s Hospital, The HEARTest Yard supports families with children with congenital heart disease. The 5K in Charlotte would be a “bright spot to focus on,” says Caitlin, as they prepared for Nora’s birth.
You might say that the 5K was just the first step in the marathon of Nora’s care.
Nora was born with a severely underdeveloped heart. Her aorta and the left side of her heart, which would normally pump blood to her body after receiving oxygen-rich blood from her lungs, were shrunken.
Fortunately, this condition was discovered with a prenatal ultrasound, says Andrew Bensky, MD, a pediatric cardiologist at LCH. “This diagnosis allowed us to prepare Nora’s parents for what they could expect but also to make sure we had the specialists on hand when she was delivered to prepare for a great outcome,” says Dr. Bensky.
Four days after her birth, Nora had a six-hour surgery to repair her heart. Her aorta was reconstructed, allowing the right side of her heart to take over for the left.
“In Nora’s case, she only had half a functioning heart, so you have to use that half of a heart to drive blood to the rest of the body,” says Paul Kirshbom, MD, chief of pediatric cardiothoracic surgery at LCH. “She did very well in the surgery.”
This would be the first of three operations to rebuild Nora’s heart during her childhood.
“We believe she’ll eventually need a heart transplant when she’s an adult,” says Dr. Kirshbom. The type of surgeries Nora had are so relatively new that the first patients to undergo these procedures have just reached their 30s.
In fact, there are only about 500 cases of hypoplastic left heart syndrome in the US each year. LCH is the only center in the Charlotte area able to treat children with this highly complex condition, operating on 15 to 20 patients annually.
Building a home away from home
Following her surgery, Nora had some typical issues: She had trouble eating and needed a feeding tube. But she also had two rare infections that complicated her stay. A child usually spends about four weeks in the hospital after the first surgery, but Nora had to spend four months. While here, she also received her second surgery.
“During those four months, we made Levine our second home,” says Caitlin. Either she or her husband spent every night sleeping in Nora’s room.
“All of her nurses and nurse practitioners at LCH knew us and all our concerns,” says Caitlin. Right after Nora was born, one of those nurses set up her room with a colorful quilt and placed a bow and a sign with Nora’s name on her crib. “They helped make what was a very scary situation into a warm and comfortable environment,” says Caitlin.
At LCH, Caitlin also met other “heart moms” who shared their experiences and made the Fallons feel part of a larger community.
Crossing the finish line
After Nora was discharged – fittingly on Valentine’s Day last year – she continued to receive great care thanks to The HEARTest Yard. The charity provided two in-home, private nurses at no cost to the Fallons.
“The HEARTest Yard was amazing,” says Caitlin. “They gave me the chance to go back to work because I had the peace of mind Nora was being taken care of by medical professionals. That was just priceless.”
Now 1 year old, Nora is filled with energy. She loves playing with her older sister, Avery, and is starting to talk. The Fallons have moved away from Charlotte, but they may return when Nora needs her third surgery in a few years. “It’s hard for me to imagine trusting Nora with someone other than Dr. Kirshbom,” says Caitlin.
Yet before they left town, Caitlin participated in another HEARTest Yard 5K. This time, the Fallons had a team of more than 100 – including Nora.
“Crossing the finish line with Nora in her stroller was just the most amazing feeling,” says Caitlin.