Approximately 40,000 babies are born each year in the United States with a Congenital Heart Defect (CHD). About one out of every 100 people have a CHD of some kind. As the number one birth defect in the United States, National CHD Awareness week is celebrated in February, this year, from Feb. 7-14.
CHDs change the function and/or shape of a newborn’s heart (or parts within) to the point that overall health is compromised, which means treatment is typically required within the first hours, days, or months of life. For one Macon County family, celebrating CHD awareness week each year isn’t just about raising awareness, but also about celebrating the miracle of life.
Patrick Halyburton was diagnosed with mitral valve insufficiency when he was just five weeks old. His diagnosis basically meant his mitral valve wasn’t closing properly and created a lot of back flow into his lungs.
“We have been so blessed because twice daily medicine is the only thing we have had to do since his check up a year ago,” said Patrick’s mother, Lauren Halyburton. “The hardest parts, for me, have been when he had an NG (nasi gastric) feeding tube and when he had his open heart surgery at 4 1/2 months old. We were kind of thrown into the world of CHD. It was completely unexpected.”
“Learning how to insert, administer feedings, and everything else that went into the NG tube was a full time job,” said Halyburton. “We had a set caloric intake goal every day and sometimes we were battling to meet that goal. Putting weight on is extremely difficult and important for babies and kids with CHD. You have no idea how much of a blessing it is to have a child who eats well on their own.”
When Patrick was four and a half months old, Halyburton said she was faced with the most difficult decision of her life.
“When his open heart surgery was scheduled, we had about a month to prepare,” she said. “That was the darkest and scariest month of my life. We had to decide, if the Lord was to take him, was He still a good God? A tough question to answer. I struggled with doubt, worry, fear of the unknown, but the Lord is good and He is faithful. Patrick’s surgery was much shorter than we were told it would take and they were able to do a repair instead of a valve replacement. Huge deal!”
Today, Patrick is an an active, smart little 2 1/2 year old.
“He loves letters, numbers, shapes, and colors. He loves his little brother and being outside,” said Halyburton. “He has a great personality and sense of humor and is always making us laugh.”
While active and vibrant today, the treatment for Patrick’s heart defect continues. According to his mother, he takes epaned (a blood pressure medicine) twice a day to keep the pressure in his lungs at a good place so his heart doesn’t have to work harder and therefore become enlarged.
Like so many other parents who have experienced CHD firsthand, Halyburton had words of encouragement and advice to anyone facing the same experience.
“As a new, first time mom going through this, I had to learn to trust my mommy instincts,” she said. “Don’t ever let anyone try to discount that instinct. And it’s ok, no, your job, to ask questions. No matter of it’s the third time you’ve asked it. You know your child the best and are their advocate. Don’t ever be afraid to speak up for them.”