Congenital heart defects

Conditions are fairly common among newborns, but are treatable
By Clint Cooper Staff Writer
 
When David Louis Heinichen was born in June, the attendants at the Raleigh, N.C., hospital let his mother, Ellie, see him, then whisked him away.

When they came back, they told Ms. Heinichen that her son had Down syndrome and a heart defect that would require surgery in three to six months.

Mrs. Heinichen, now a resident of Signal Mountain, was at a loss. She knew what Down syndrome meant, but heart trouble? She'd had a normal pregnancy, an uneventful delivery and four other children who had no hint of heart trouble.

"It happens to anybody," said Karin Coulter, a Chattanooga native who began Saving Little Hearts, a nonprofit organization that sponsors support groups, education programs and fund-raisers. "You don't have to have a history, it's not because of something you did during pregnancy and it isn't because you didn't take some kind of vitamins."

Congenital heart defects are the most common birth defect, according to the March of Dimes. They occur in one in every 115 to 150 births.

While heart defects are the leading cause of birth defect-related deaths, advances in diagnosis and surgical treatment over the past 40 years have led to dramatic increases in survival. Between 1987 and 1997, according to the March of Dimes, the death rates from heart defects dropped 23 percent.

Tennessee Gov. Phil Bredesen has proclaimed Saturday, Valentine's Day, as Congenital Heart Defect Awareness Day.

Mrs. Heinichen said the organization has been a big help, especially after the family moved to Chattanooga without knowing anyone late last fall. She said someone at her children's school saw an article about the group in the newspaper, thought the family should see it and dropped it in her mailbox. After she called the organization, she was sent a book on congenital heart defects.

"There are all kinds of different ones," Mrs. Heinichen said.

Her son, David, had three defects which were corrected in seven and a half hours of surgery at Vanderbilt Medical Center in Nashville on Dec. 11.

In one defect, the passageway between one blood vessel and another, which normally closes soon after birth to allow the blood to take its normal route from the heart to the lungs and back, didn't close, she said. That forced the left ventricle to have to work extra hard to deal with the extra blood flow. The second and third defects dealt with holes in the heart, Mrs. Heinichen said.

"They were all very correctable," Mrs. Heinichen said. "He should be fine. He shouldn't have any more trouble."

However, she said, he will need to be monitored by a cardiologist.

Saving Little Hearts helped before, during and after the surgery by providing people to talk to, she said.

"You hear words like 'congestive heart failure,' and think your baby's going to die," Mrs. Heinichen said, "but it's not that the baby is going to die. It's a series of symptoms that, if
they continue to get worse over time, the heart could give out. Doctors don't realize you
don't know."

It's helpful to know people who have been through similar situations, she said.

"It's nice to have someone to talk to, to know what to expect," Mrs. Heinichen said.

Saving Little Hearts also sent along a package of items during the trip to Vanderbilt that included a card, a signature bear, a phone card, a camera, gum, toothbrush and toothpaste and list of questions to ask.

"You don't think about some of that," she said. "It's nice to have."

Harry R. Bakken of the Reproductive Genetics Program at the University of Utah School of Medicine said in an online article that public involvement in the fight to eliminate congenital
heart defects is vital.

"The general public often becomes apathetic toward human disease as the medical community moves toward a cure," he said. "This attitude is an especially unfortunate truth of CHDs, wherein the heightened involvement of the public - as well as the government and private foundations - is so desperately needed to support research and to support families enduring these challenges."

E-mail Clint Cooper at ccooper@timesfreepress.com