KING, N.C. — Charley Grace Alverson is a 3-year-old who has been battling for her life since she was born.
What You Need To Know
- Feb. 7-14 is Congenital Heart Defect Awareness Week, February is American Heart Month
- CHD is the most common birth defect in the United States according to the CDC
- Charley Grace is a 3-year-old with CHD who has received two open-heart surgeries and a pacemaker
- There is no specific cause of CHD, and there is no cure for the defect
Lynsey Alverson is a soon-to-be mom of three, but still remembers how she felt when she found out she was pregnant with her first child.
“We quickly became very excited. First grandchild on both sides. Obviously, first child, first everything. So we were very excited. And then when we found out she was a little girl, we were just over-the-top excited and just couldn't wait for her to get here. It's so exciting,” Alverson said.
Alverson had a healthy pregnancy, but after Charley Grace was born, doctors knew something was wrong but weren’t sure what, until the first-time parents received a call from a cardiologist at Brenner Children's Hospital in Winston-Salem.
“He said, ‘Hi, I'm a cardiologist and your daughter. We know what's wrong with her. She has a heart defect, and we're getting ready to put her on a helicopter. And she's going to Levine Children's (Hospital in Charlotte), and she's got to have open-heart surgery.’ And we're like, ‘Come again, say that again.’ So it was definitely, it was it was shocking. We were already scared to death,” Alverson said.
Her daughter received open heart surgery at 3 days old and then at 3 months.
“It was, it was definitely top three shocking pieces of information that I have ever heard in my entire life,” Alverson said.
Charley Grace was born with total anomalous pulmonary venous return, a congenital heart defect that was pumping her blood incorrectly, mixing her oxygen-rich and oxygen-poor blood, Alverson explained.
With Feb. 7-14 being Congenital Heart Defect (CHD) Awareness Week, Alverson said it's important to share knowledge about the condition. The American Heart Association says nearly 40,000 infants are born with a congenital heart defect in the United States each year, and one in four of these babies need surgery before their first birthday.
“Her specific type of defect is a little more rare. And the surgeon said, ‘I really do that type of surgery maybe half a dozen times a year.’ So to hear that, you're like, 'oh, my gosh, OK, there's no hope.' But at the same time, we try to think about the fact of 30 years ago, she probably wouldn't have made it. But thank goodness that science and research and you have these incredible doctors and surgeons who work to constantly learn new things to do and new ways … to make repairs,” Alverson said.
Her daughter also used a feeding tube for over a year, as well as had a pacemaker put in at just 2 years old.
“We're very particular about an oxygen check and heart rates and all those types of things before and after she goes and does anything … looking at her, you'd have no idea that she's been through what she's been through. And she's far tougher than we would ever be,” Alverson said.
The mom says her daughter does not show any signs that something could be wrong, although her heart rate could hit over 200 beats per minute.
“I'm sure to her it probably felt like she was running a marathon. But to us, she didn't show any kind of symptoms or anything like that. Even when she was in the hospital, her heart rate would be as low as 29 beats per minute to 222 beats per minute,” Alverson said.
Charley Grace is able to play and do activities like dance. Advancements in medical research are helping children born with CHD live past their 18th birthdays and well into adulthood.
“A surgeon said to me one time, he said, ‘What's the point of us doing all that we're doing if we're not going to let her live a normal life?’ So, we try to just, we try to just stay positive and think about how far she's come,” Alverson said.
Alverson says she is now a high-flying member of a club she never wanted to be a part of but wants to tell parents. It’s also a community of support and to look for hope.
“My advice for anyone is to, it's OK to cry about it, to be upset about it, to have your feelings about it because it is hard. But I have learned that these kids are called heart warriors for a reason because they are tough and they are brave. And you know, she doesn't even realize that she's had to be brave and she's had to fight her entire life,” Alverson said.
On Feb. 7, the American Heart Association and the Children’s Heart Foundation announced over a $500,000 commitment to new research for CHD. To celebrate 100 years of lifesaving service, the organizations in collaboration have pledged more than $10 million across 10 years for CHD research funding.
Alverson also encourages others to look into ways to donate to families at the hospital in the cardiology unit or find a way to show support. The family will be delivering items from this wishlist to the Levine Children’s Hospital Cardiac Unit at the end of February.
“One thing, we've learned is life is short, life is precious. And, there's no need to sweat the small stuff,” Alverson said.