AHA marks Congenital Heart Defects Awareness Week with survivors’ stories

Georgia Haynie

Hoover residents Beaux and Taylor Haynie had been high school sweethearts, together for 17 years. They waited four years into their marriage to have children, only to suffer a miscarriage. So when they found out they were pregnant again, they were elated and knew this child would be special. They said they never could have anticipated just what a miracle she was.

Georgia was diagnosed at 20 weeks in utero with an unbalanced atrioventricular (AV) canal defect. An AV canal defect means there is a large hole in the center of the heart affecting all four chambers where they would normally be divided. The defect allows blood to mix, and the chambers/valves cannot properly route the blood to each station of circulation within the heart. AV canal defects account for 4-5 percent of congenital heart defects and occur in three of 10,000 babies born.

Despite her diagnosis, Georgia did extremely well after birth. She stayed in the neonatal intensive care unit for only seven days and went home at a week old. Yet at her two-week checkup, tests showed she was in heart failure. The news was shocking to Beaux and Taylor.

“They had told us we would need to follow up with a cardiologist in four to six months. We never expected to go in at two weeks old. It all happened so fast,” Taylor said.

Georgia had open-heart surgery in May 2016 to repair the defect. Although she was so young, her recovery went smoothly. She’s also not expected to need further procedures, a relief to her parents. Taylor said sometimes her family forgets that Georgia was ever sick, but there is one reminder of her heart warrior’s battle.

 “The biggest reminder for us is her open-heart surgery chest scar. It reminds me of how special she is. She is a heart warrior, and she is stronger and braver than I could have ever imagined,” Taylor said.

Now the Haynies work to raise awareness for heart warriors like Georgia through American Heart Association events. They said it’s an important way to give back to an organization that provides so much knowledge and comfort for parents going through this emotional journey.

Beaux Waites

Shellie and Lauren Waites couldn't wait to meet their new baby boy in 2012. They knew their lives would change, but the Waites had no idea just how their baby, Beaux, and his heart would change their world forever.

The Waites had done the regular prenatal tests, and doctors had no concerns. Everyone expected Beaux to be a healthy, happy baby, but just minutes after he was delivered, the Waites watched their newborn son whisked away to the NICU. They had no idea what was happening until a doctor informed them that Beaux had been diagnosed with Down syndrome, pulmonary hypertension and multiple heart defects, including an AV canal defect. Fifty percent of all babies born with Down syndrome also have an AV canal defect. Beaux would need open-heart surgery before he was six months old. 

“Our OB even went back after finding out to double-check all the tests and scans, and still couldn’t find anything. It was definitely God’s plan to keep him a special secret to us until the time came,” Lauren Waites said.

The surgery was complicated, repairing a valve and patching three holes in Beaux’s heart. Beaux stayed in a heart block for seven days after the surgery, meaning his heart wasn’t able to beat in rhythm by itself. Just before doctors were about to put in a pacemaker, his heart started working on its own.

At his most recent cardiovascular appointment, Beaux was cleared to only receive heart checkups once a year, huge news for this family. Beaux still has moderate leaking in his right valve, a mass growing in his mitral valve, and will need another heart surgery around 10 years of age. Yet, his parents are so thankful and say he is living the life that they never thought he could have.

“It’s important to advocate for awareness to give a voice to those that need it most,” Lauren Waites said. “It’s more than just raising awareness; we have to raise acceptance. For Down’s or CHD — whatever it may be that makes people different and not able to do things like most people do. We have to show the general population that these individuals are not weird or strange and that they don’t have disabilities, they just have ‘diff-abilities.’ It’s about moving past just awareness into acceptance and realizing that all lives matter and all lives are precious.”

– Submitted by American Heart Association.