Charlotte Family Raises Awareness About Congenital Heart Defects in Infants

If Breyanna Barton hadn’t taken her daughter, Journi Heggins, for a routine doctor’s appointment about three weeks after she was born, there’s a possibility the three-year-old wouldn’t be here today.

At that fateful appointment, doctors noticed the baby’s nostrils were flaring and realized her oxygen levels were low, which required them to rush her to the emergency room. She was diagnosed with a congenital heart defect (CHD) called total anomalous pulmonary venous return (TAPVR). The condition prevented her body from getting enough oxygen.

According to the CDC, TAPVR is considered a critical CHD, meaning babies with this condition need to be operated on or have treatment before age one.

“It’s very frightening and overwhelming. I honestly felt I was dreaming or in a movie,” Barton told Spectrum News in Charlotte, NC. Journi had two open-heart surgeries as a newborn.

About eight in every 1,000 infants who are born in the United States have a heart defect, according to the Mayo Clinic. CHDs are the most common type of birth defect, but as medical care and treatment have advanced, babies with a CHD are living longer and healthier lives.

According to the CDC, signs of CHDs in babies include blue tinted nails or lips, fast or troubled breathing and tiredness when feeding and sleepiness.

CHDs are present at birth and can affect the structure of a baby’s heart and the way it works. They can affect how blood flows through the heart and out to the rest of the body. CHDs can vary from mild, such as a small hole in the heart, to severe, such as missing or poorly formed parts of the heart. About 1 in 4 babies born with a heart defect has a critical CHD. Babies with a critical CHD need surgery or other procedures in the first year of life.

Novant Health pediatric cardiologist Dr. Matthew Brothers told Spectrum News that with awareness, technology and new protocols, most CHDs are detected in the womb and after birth. He said there are more adults living with CHDs in the United States than children.

Congenital heart defects happen because the heart does not develop normally while the baby is growing in the womb. Doctors often do not know why congenital heart defects occur. Researchers do know that genetics can sometimes play a role. It is common for congenital heart defects to occur because of changes, or mutations, in the child’s DNA. The mutations in the DNA may or may not have come from the parents, according to the CDC.

CHDs also are thought to be caused by a combination of genes and other factors, such as things in the environment, including maternal or paternal exposure to industrial solvents in the workplace. According to the Environmental Protection Agency, trichloroethylene (TCE) is one of the solvents that can cause CHDs.

Many children with CHDs are now living into adulthood. An estimated two million people in the United States are living with a CHD, the CDC said. Many people with a CHD lead independent lives with little or no difficulty. Others might develop disabilities over time.

Even with improved treatments, many people with a CHD are not cured, even if their heart defect has been repaired. People with a CHD can develop other health problems over time, depending on their specific heart defect, the number of heart defects they have and the severity of their heart defect. For example, some other health problems that might develop include irregular heartbeat, increased risk of infection in the heart muscle, or weakness in the heart.

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