Lisa learned at 22 weeks pregnant that her son had a set of serious congenital heart defects called Truncus Arteriosus, Aortic Arch Interruption and ventricular septal defect (VSD). Knowing very little about the CHD world at that point, she set out to learn as much as possible about Xander’s CHDs and who would care for him after birth. She discovered that Children’s Health Care of Atlanta Cardiology was both regarded as one of the best places in the U.S. for her son to be, and it was in her own backyard.
Xander had open heart surgery at two days old and again at age 5. In between, doctors performed eight catheterization procedures on his heart. At 16, Xander’s family noticed he was slowing down. He was unable to play basketball with his younger brother, Alder, for as long as he used to, and he had trouble keeping up with the family bike rides at their annual Hilton Head beach vacation.
Xander’s pediatric cardiologist, Neill Videlefsky, MD, told the family that intervention would soon be necessary. Doctors proposed using an innovative cath procedure that would allow Xander to avoid another open heart surgery.
Lisa said she has attended the annual Parenting Your Heart Child conference since Xander was born. She’d learned about many innovations in CHD care over the years, particularly those which addressed her son’s specific CHDs.
“We’ve heard about these kind of procedures for years, and we hoped for them,” Lisa said. “Now our son was going to benefit, and he wouldn’t need open heart surgery. It was exciting.”
The cath procedure on Xander took six hours, and a text from Dr. V let Lisa know they were “over the moon” with what they had been able to do, increasing his lung profusion from 30 to 80 percent. Xander was back at home the next day.
“His color was much better, and he had way more stamina when we went away on our beach trip this year,” Lisa said. “He biked with us every single day. The day before we left for the beach, we were at the Monster Jam World Finals in Nashville. Xander has been a Monster truck fan since the age of 5. He was able to enjoy everything, which was great.”
Xander graduated in May from the Howard School and will be headed to The Horizons School in Birmingham, Alabama, in September to continue his education. Although he has faced some developmental delays and learning differences, Lisa said he has thrived and enjoys a tight-knit group of friends and a close relationship with his brother. He played soccer and basketball in high school and was on the bowling team. She says they were given advice early on the CHD journey to treat Xander the same as they would’ve had they not known about his diagnoses. Lisa says they took that advice to heart and strive to treat their kids the same, giving them a typical childhood.
“We’ve had the capability to provide all he needed to walk his own path,” Lisa said. “Now we’re setting him free, and we’ll see what he does next. We’ll always be his safe landing spot.”
Lisa said she worked in interior design prior to becoming a heart mom. With Xander and the CHD community, she found her true calling. Xander attended Camp Braveheart for five summers, and Lisa sat on the board of the Children’s Heart Foundation Congenital Heart Walk. She has been involved in Kids at Heart and the Georgia Heart Moms Facebook group from the beginning, and she recommends finding solid support from other heart parents.
“Being part of a group of people who have ‘been there, done that’ is important,” Lisa said. “You need support from other parents who have sat in the ICU and who have heard the emergency code calls. These are the people who can share both the devastations and the triumphs, so you won’t feel so alone.”
For more information about Children’s Healthcare of Atlanta Cardiology and our pediatric cardiology specialists, click here.