Image: Angela Trout and family
Kiichiro Sato  /  AP
Angela Trout, 29, sits in her living room with her daughters Korina, 4, left, and Nadia, 7 months, in Columbus, Ohio. Trout was told as a teenager, erroneously, that her malformed tricuspid valve left her too weak for pregnancy.
updated 10/16/2006 6:45:09 PM ET 2006-10-16T22:45:09

They were born with once-lethal heart defects but lived fairly normal lives — until they wanted babies of their own. Now these survivors need special care again, sometimes even heart surgery, to become mothers.

It’s care difficult to find: Few cardiologists are trained to treat adults with congenital heart disease, much less when pregnancy puts extra strain on their vulnerable hearts.

Some mothers-to-be thought they were cured as children, only to learn a surgical repair is not a cure and may eventually wear out.

Many others were told never to get pregnant, though some didn’t listen — while other patients with milder conditions were unnecessarily scared by physicians unfamiliar with the defects.

“I call these girls my miracle babies, the miracle babies we didn’t think would happen,” says Angela Trout, 29, of Columbus, Ohio, who has a 4-year-old and 7-month-old despite being told as a teenager, erroneously, that her malformed tricuspid valve left her too weak for pregnancy.

Still others go through open-heart surgery before conception, replacing valves so their hearts beat stronger, or have less invasive heart surgery while pregnant.

“It’s fascinating and it’s amazing, some of the stories of these women, how brave they are,” says Dr. Curt Daniels. He heads the adult congenital heart clinic at Ohio State University Medical Center and has cared for 140 pregnant patients, with no deaths so far, in one of the nation’s few programs that target the high-risk women.

About one in 125 babies is born with a heart abnormality, the nation’s leading type of birth defect. Some are mild and cause few problems. Others are complex, and commonly killed in infancy until the 1970s, when open-heart surgery for babies and young children became common.

Today, most children with complex heart defects grow up and live near-normal lives for many years. There are an estimated 1 million U.S. adults with congenital heart disease, a population growing at about 5 percent a year.

Major risks
Still, they are at increased risk of irregular heartbeats, enlarged hearts, heart failure, sometimes sudden death, decades after their childhood heart repairs.

Pregnancy can bring out those risks sooner, because to nourish a fetus, the amount of blood in a woman’s body and how much her heart pumps each minute both jump by 50 percent.

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With ever-more congenital heart disease survivors reaching childbearing age, a pressing question is how to predict who will have a troublesome pregnancy, and who shouldn’t worry.

With proper care, mothers-to-be seldom die. In a 2001 study that tracked almost 600 congenital-heart pregnancies at 13 Canadian hospitals, there were three heart-related deaths.

But almost one in five such women will have serious heart complications during pregnancy, cardiologists at Boston’s Brigham and Women’s Hospital reported earlier this year.

That study tracked 90 pregnancies among congenital heart patients. Mothers at highest risk of complications had poorer-pumping hearts before pregnancy, or problems getting blood past the heart’s pulmonary valve.

Daniels, who is preparing to publish Ohio State’s outcomes, adds as top risks having an enlarged aorta, which could rupture during delivery, or so-called “blue-baby” conditions that mean blood doesn’t get enough oxygen.

Daniels’ scariest patient to date: One who got pregnant despite his caution that she had a 50-50 chance of dying. A multiple-defect condition called Eisenmenger’s syndrome dangerously increased blood pressure in her lungs and stressed her heart. She needed continual infusions of powerful medications to stay alive, but it worked and the baby is fine.

Many doctors fear giving medicines during pregnancy in case the drugs are blamed for a birth defect.

“We’re not shy” with drugs, Daniels says. “You have to treat the mom and make the mom healthy, and the baby will have a better chance.”

Then there was the woman who had scheduled an abortion because another cardiologist called her heart too weak for pregnancy. Daniels’ own testing showed her cardiomyopathy was mild enough to control with simple medicines; she canceled the abortion and recently delivered a healthy baby.

“You try to have some confidence when you say, ’You’ll be OK,”’ he says. “When she makes it through, it was very emotional.”

The biggest enemy
For most of these women, overblown anxiety is the biggest enemy, adds Daniels’ nurse, Libby Sparks, who urges patients to call her day or night to report symptoms that worry them.

Daniels’ advice for heart-defect survivors:

  • Get a heart checkup before becoming pregnant. An exercise stress test and other checks that are simple to do before conception, but hard during pregnancy, can accurately assess your risks.
  • Mothers-to-be whose hearts are deemed higher-risk should seek programs where obstetricians who specialize in high-risk pregnancies work with cardiologists trained in adult congenital heart disease.

© 2012 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

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