Daughter’s condition prompts local family to sponsor Palmetto Heart Walk
When Meredith Walls was four months pregnant with her daughter, Ryan Elizabeth, she was given news that no parent wants to hear.
The baby had a third-degree congenital heart block, a life-threatening condition that slows the heartbeat.
Walls explained that when someone has a heart block, the electrical pulses that control the heart rate are disrupted, causing the heart to beat more slowly. A normal range for a heartbeat at Ryan’s stage in utero at that point is between 100 and 160 beats per minutes; Ryan’s heartbeats per minute ranged from the high 30s to low 40s.
“I was overwhelmed with the diagnosis, but tried to maintain a calm and intelligent approach to it all,” Walls said. “I devoured everything I could find about CHD and became the biggest advocate for my daughter from that day forward.”
Doctors assured Walls that a pacemaker would fix the problem. They just had to wait until the baby was born to implant one.
On Aug. 23, 2004, Ryan was born six weeks early at the Hospital of the University of Pennsylvania, weighing only 3.5 pounds.
Normally, a child with a heart block would undergo surgery to have an internal pacemaker installed at birth. But because Ryan was so small, she was given a temporary external pacemaker and had to wait until she weighed 5 pounds to get an internal one. Just moments after her birth, Ryan was whisked away and taken through a tunnel from the hospital she was born in to the Children’s Hospital of Philadelphia, where she had her first heart surgery at just 45 minutes old.
She was 8 weeks old when she had the surgery to install the internal pacemaker.
Now 11 years old, Ryan is a healthy, active child who enjoys soccer, basketball and horseback riding. She loves to read and spend time on the May River, and is in the fifth grade at River Ridge Academy in Bluffton.
Her current pacemaker sits in the wall of her abdomen, but next year she will receive an “adult” pacemaker, which will be placed by her collarbone.
Because of their experience with heart disease, the Walls family wants to raise awareness about the condition. The family business, Walls Investment, sponsored this year’s Hilton Head Heart Ball and is sponsoring the 2016 Palmetto Heart Walk. They have formed their own team, the Young Heart Warriors. The walk is set for April 30 on Hilton Head Island.
The Walls family is looking for people who are 21 years old and younger in the Lowcountry who have been affected by congenital heart defects or congenital heart disease to join their team.
They haven’t met many people with congenital heart defects but did get the chance to meet a little girl with a heart condition at the Hilton Head Heart Ball in January. Still, they would love to connect with more people.
“When you’re in the situation, especially if it’s at birth or they’re very, very young, you’re so in the situation; you’re too close to it that you’re just trying to get through the day, the hour,” Walls said. “But I think now that 12 years time has gone by, it’s really important to reach out and try to connect with other parents.”
Looking back, Walls said it would’ve been nice to have the support of others who had been in their shoes. But as all parents know, life gets crazy with kids and some things just don’t happen.
Not only is the walk an opportunity to raise awareness, and for Ryan and her family to meet others dealing with congenital heart defects. It’s a chance to make a real difference in the lives of people affected by these conditions.
Proceeds from last year’s walk helped fund more than $4 million in research projects in South Carolina, as well as local advocacy, education and outreach across Beaufort, Colleton, Hampton and Jasper counties, according to Kelly Lynn Bedtelyon, director of marketing and communications for the Mid-Atlantic Affiliate of the American Heart Association.
It’s also a chance to simply encourage others to take care of their own hearts.
Carla Raines, development director of the Lowcountry chapter of the American Heart Association, said it’s important to get people out there, moving and walking.
To help emphasis heart health, the walk will also feature CPR demonstrations, blood pressure checks and a kids’ zone at the event.
Raines said heart disease is the No. 1 killer of Americans, and one in 100 babies is born with a congenital heart defect.
Raines said thanks to the association, all newborns in South Carolina are now required to undergo pulse oximetry tests, which detect over 80 percent of heart defects before babies go home from the hospital. The association is also pushing for CPR training to be mandatory for high school graduation in South Carolina.
“Most people associate heart disease with older people — stroke and heart attack and things like that,” Walls said. “But for us, it’s important to show the other side, that there really are thousands of families that have children that are being affected by it as well.”
The 2016 Palmetto Heart Walk will take place April 30 at Shelter Cove Towne Center - Waterfront Park on Hilton Head Island. Activities will begin at 8:30 a.m., and the walk will start at 9:30 a.m. To register or make a donation, go to www.palmettoheartwalk.org. There is no cost to walk, but donations will be accepted.