Family arms itself with information about congenital heart defect

Feb. 12--DECATUR -- Twenty weeks into her pregnancy, Heather Ross wasn't anticipating anything to be amiss when she went in for a routine ultrasound.

"Most people just want to know if they are having a boy or girl," she said.

The Ross family was given considerably more information than that when the scan detected their son's life-threatening congenital heart defect.

The Rosses analyzed their options. Ultimately, they decided to use all the tools available to help their child survive and thrive. "We wanted to give him a fighting chance," Heather Ross said.

Six days after his birth, Cannon would have his first surgery to correct the heart defect.

For three months the family stayed at St. Louis Children Hospital with other parents of children with congenital defects. Since that frightening time, Heather has educated herself about her son's condition and how to help others in similar situations.

A study by the Centers for Disease Control and Prevention stated that congenital heart defects are the most common defects born to children. The research also found patients may have other congenital problems, such as underdeveloped brain, requiring further education and therapy. Throughout his development, Cannon's family focused on his heart condition, but watched for other health problems.

Southern Illinois University School Medicine Assistant professor and pediatric cardiologist Dr. Ramzi Souki has studied several hundred heart conditions which fall under the CHD spectrum.

"Some are complex heart problems, some are simple," he said.

A defect occurs during heart development soon after conception, according to the American Heart Association. The heart is the one of the first organs to form, but it cannot be studied until the second trimester, between weeks 14 and 26 of the pregnancy. By then, the heart defect already exists.

"It is not something that has grown over time," Souki said.

Heart problems can be detected through ultrasounds and other tests before birth. The examinations allow doctors and parents extra planning and precautions before the child is born.

One of the more common heart defects, Souki said, is a hole in the heart -- atrial septal defect -- in which a part of a heart wall is missing. Cardiologists find repairing the damage can be somewhat simple compared to other conditions. The heart is often repaired with medicine or surgery.

Other children, such as Cannon, are born with parts of their heart missing. Those children may need multiple surgeries to repair damage or redirect the blood flow.

This is why Souki often views his small patients as courageous fighters.

"We are encouraged by the ability of these children to put up with a lot of the suffering," he said.

Congenital Heart Defect Awareness Week, Feb. 7-14, was designed to bring attention to the heart conditions, the children and the support needed during a difficult time. Families, as well as Souki and other cardiologists, encourage others to help their patients through organizations such as the Children's Miracle Network and the Ronald McDonald House.

During their stressful time, the Ross family received emotional support from other families, the American Heart Association and the Mighty Oaks, a St. Louis-based heart foundation.

Cannon is now 4, and his last surgery was in the summer of 2016.

His mother still watches him closely, noting any changes in her son which would indicate problems with his heart. As his heart continues to develop, his body can show signs of a problem. "He gets tired easily and his skin turns blue," Heather said.

Cannon also has received early intervention with physical and speech therapy often associated with underdeveloped organs in children. The CDC has found more than half of the children born with severe heart defects have other disabilities or impairments.

But Cannon is currently doing well. He is enrolled in preschool with plans to attend kindergarten in the fall. Although he plays basketball through his church, he understands he has limitations.

"He rests when he needs to and gets thirsty easy," his mother said.

Cannon may need a heart transplant as an adult, but right now, he is a healthy little boy.

"If you were to look at him you wouldn't know anything is wrong with him," Heather said. "We've had a few bumps in the road, but he's doing great."

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