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February 6, 2006

A University of Michigan Health Minute update on important health issues.

Adults born with heart defects face special challenges later in life, U-M expert says

Special attention needed for growing number of grownups who have lived with heart problems since childhood, or were treated as kids

ANN ARBOR, MICora Gillespie spent the first 44 years of her life held back by a heart defect she’d had since birth.


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As a child, she couldn’t run and play with the other kids – and as an adult, she couldn’t walk far without getting out of breath. A heart muscle defect kept her heart from pumping enough blood to her lungs, starving her body of oxygen and causing a loud heartbeat that pounded in her chest. Doctors told her and her parents that she wouldn’t live long, and the risks of open-heart surgery seemed overwhelming.

But today, she’s a new woman. An operation at the University of Michigan fixed the problem, and with specialized follow-up care at the U-M Cardiovascular Center, she’s able to do things she’s never done before. “After the surgery, I felt like a butterfly out of a cocoon,” she says. “I just felt like flying, like I could do things and go places.”

A million other American adults, and counting, are facing situations like Gillespie’s. Born with heart defects, they’ve grown up with limited function and the knowledge that their condition might shorten their lives. Or, if they received treatment in the early years of children’s heart surgery, the scar tissue from their operation is now starting to interfere with their adult heart. Or, they may not even realize they have a heart defect that could lead to a stroke or heart attack.  

It’s been several decades since doctors first developed treatments for children’s heart problems that allowed them to live to adulthood. But only recently have doctors begun to offer specialized programs for the adults those patients became.

Julie Kovach, M.D., FACC, FASE, is one such doctor. A cardiologist, or heart specialist, at the U-M Cardiovascular Center who is trained in treating adults, she cares for Cora, and for hundreds of patients like her, in a special clinic held each week at the U-M. She works together with the doctors and nurses of the Michigan Congenital Heart Center, a U-M CVC program known around the world for treating even the most severe heart defects in babies and children.

Health Minute Image“Because of advances in open heart surgery, especially in infancy and early childhood, many, many children are growing to adulthood who would never have lived beyond adolescence in the past,” she explains. “In fact, in the next five years, there will be more adults living with congenital heart disease than there will be children with it.” Congenital, meaning “from birth,” is the word used to describe any heart defect or condition that is present in a baby’s heart or arises during childhood.

The U-M’s Adult Congenital Heart Disease Program, begun in 2000, is the only one of its kind in Michigan, and one of only a handful in the nation. Occasionally, its adult patients are seen in the halls of U-M C.S. Mott Children’s Hospital, where they receive diagnostic tests, invasive treatments and surgery in the same facilities where children do. Gillespie, for example, had her heart defect accurately diagnosed and repaired at the Michigan Congenital Heart Center by doctors who have special training in such procedures.

The U.S. Centers for Disease Control and Prevention recently estimated that 6,500 children are born each year with one of five extremely severe heart defects — an average of more than one in every 1,000 births. Most of these children, and thousands of others, must have heart surgery shortly after birth in order to survive. Tens of thousands of others are born with less-severe problems that may require treatment or special monitoring.

In all, about 36,000 babies are diagnosed with some form of heart problem each year. Thousands of children also have irregular heart rhythms and other heart-related problems, including infections in the heart muscle that can damage their heart for life.

Most of these kids will grow up to lead normal or near-normal lives, says Kovach, an assistant professor of cardiovascular medicine at the U-M Medical School. But as their bodies age, they may have extra problems. “Children who have had holes in their heart repaired were always told that they were cured,” she says. “But the surgery involved stitches, and those form scar tissue around the patch or repair. In adulthood, the scarred area can lead heart rhythm disturbances to develop.”

While the operations saved their lives in childhood, these patients need to be more aware of their situation as they grow to adulthood.

“What we have learned over the years is that none of these children were actually cured, and as they become adults in their 30s, 40s and 50s they can develop new problems related to the surgery they had when they were younger,” she says. “These include problems with heart rhythm, problems with blood pressure and other heart-related issues, in addition to the same types of heart diseases that all adults get, such as coronary artery disease, hypertensive heart disease and such.”

Others may not discover a heart problem they’ve had since birth until a physical exam or medical scan reveals a tiny hole in the wall between the chambers of the heart, or a malformed blood vessel. Sometimes, such problems are found only after a heart problem occurs – heart defects that are not repaired can lead to the formation of blood clots that can break off and travel to the brain or small blood vessels, causing heart attacks and strokes.

Whether the problem was fixed or diagnosed early or late in life, Kovach stresses the importance of specialized care.

“Often times, these adults will not have seen a doctor in many years because they felt well, or changed jobs, or lost the insurance from their parents and don’t have it again until they’re older,” she says. “And even if they are seen by a doctor, most general doctors and even general cardiologists may not be aware of the special problems that can arise.”

But the good news, Kovach says, is that many adults with heart defects can have a life expectancy just like that of other Americans, especially if they’re treated by a doctor experienced with managing patients like them. “They may have specific problems that require medications or procedures over the years, but we can expect that most of them will live to an advanced age,” she predicts.

Gillespie is looking forward to that, and is making up for lost time. “It’s awesome, and I feel wonderful. If you ask me, ‘Cora, rate yourself,’ I’d say ‘100 percent healthy.’ I am a healthy woman and I am so happy.”

About congenital heart defects in adults:

  • Congenital heart defects are problems with the structure or form of the heart and major blood vessels, which occur when a fetus’s heart is developing in the womb. They range in severity; some are lethal within hours or days of birth unless treated, while others can go undetected until a person is an adult.
  • Until the late 20th century, most babies born with moderate to severe congenital heart problems did not live past childhood, and many died in infancy. But advances in treatment, including the ability to perform open-heart surgery on children and infants as young as one day old, have improved the odds for most children. Death rates from congenital heart defects have declined substantially.
  • More than a million American adults have some form of congenital heart disease, and the number is rising as children who were among the first to receive modern treatment are reaching adulthood.
  • As these adults age, their heart defect or the scar tissue from the repair of their defect may begin to cause problems. Scar tissue can lead to heart rhythm disturbances, while unrepaired holes and other defects can encourage the formation of clots that can cause heart attacks and stroke. Blood pressure and the strength and shape of the heart muscle can also be affected by congenital heart defects.
  • Adults who have never had their congenital heart defects repaired can receive treatment even later in life, from doctors who specialize in treating such problems.
  • Adults who had a heart problem treated in childhood, know they have one but haven’t been treated, or has recently learned they have one, should seek specialized care from doctors trained in handling patients like them.

For information on treatment for adults and children with congenital heart defects, and for pregnant women who have been told their baby will be born with a heart defect, contact the  U-M Cardiovascular Center toll-free at 888-287-1082.

Find out more on the web at:
U-M Cardiovascular Center

U-M Michigan Congenital Heart Center: Congenital heart conditions, tests and treatments

American Heart Association: Adults with congenital heart disease

American Heart Association: Statistics on cardiovascular conditions in youth (PDF file)


Written by Kara Gavin


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