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A day for troubled hearts

Nationwide campaign aims to raise awareness of heart defects

Posted: Monday, February 14, 2000

When two-and-a-half-year-old Max Blust is bouncing on the couch or practicing his favorite phrase, ``No way, Mom,'' he seems to be your average Juneau preschooler.

But when he takes off his shirt, you can see the scars crisscrossing his chest from a continuing battle with congenital heart defects.

His health problems, and those of thousands of other children, are the focus of ``A Day for Hearts,'' a nationwide Valentine's Day birth defect awareness campaign.

Max was born during Juneau's fireworks display on the Fourth of July 1997, the first child of Jeannie Monk and Tim Blust. Monk works in the Southeast Alaska Regional Health Consortium's Health Promotion Department and Blust manages a salmon hatchery at a remote site.

Monk said she had ``a very normal, easy pregnancy,'' with no hint of a problem.

``I had been warned about Down syndrome, but had never even considered a heart defect,'' said Monk, 36. ``And I did everything right during my pregnancy.''

Congenital heart defects are usually recognized at birth, said Juneau pediatrician Amy Dressel. Signs of their presence can be odd breathing, a heart murmur or a blue pallor.

Recently, technological improvements have allowed physicians to diagnose some heart defects in the womb, Dressel said. In some cases, corrective surgery can be performed before babies are born.

Some heart defects seem to be chromosomal in origin, and there may be inherited tendencies to them, Dressel said.

The most common genetic heart defect is patent ductus arteriosus, which the Alaska Birth Defects Registry found occurred in 5.9 babies per 1,000 live births in Alaska in 1996.

Dressel defined the condition as an opening in the heart that is needed before birth and supposed to close at birth - but sometimes does not.

``Before you are born, you have a circulatory system in place to bypass the lungs because your lungs are not functioning,'' Dressel said. ``A duct, a hole from the right side to the left, at the top of the heart, keeps the lungs out of the loop. When you're born, the hole is supposed to close.''

When the hole doesn't close, unoxygenated blood mixes with oxygenated blood, turning the baby blue. Usually, Dressel said, minor surgery corrects the problem. Sometimes it corrects itself in a day or two.

Within a few hours of his birth, Max was medevaced to a Seattle hospital. He had heart surgery at three days old and again at four days, as well as at two months.

Max's diagnosis counted two heart defects: pulmonary atresia and hypoplastic right ventricle. Pulmonary atresia means the artery that carries blood from the heart to the lungs was completely blocked. A hypoplastic ventricle means that chamber of the heart is underdeveloped - incapable of pumping the blood supply his body needs.

The blockage was relatively easy to remedy, but the undersized ventricle was serious.

``As he grows, his heart isn't able to keep up with his rising activity level,'' Monk said. ``At present, a compensatory shunt takes blood to his lungs, while they wait to see if his ventricle will grow.''

Max takes medication twice daily and will need further surgery.

Congenital heart defects such as Max's are the most common of all birth defects, affecting more than 25,000 babies each year in the United States.

A recent study by the Alaska Birth Defects Registry showed 12 percent of all babies born in 1996 - 1,214 children - suffered from birth defects. The four most common anomalies were all congenital heart defects, and Alaska had them in ``significantly higher'' numbers than some other states.

To increase awareness, Gov. Tony Knowles joined governors in at least 40 states to proclaim today ``A Day for Hearts.''

A century ago, many babies born with congenital heart defects were considered incurable. Some ``blue babies,'' named for the skin color that came from a lack of oxygen, died immediately. Others lasted only a few months.

Medical advances have increased the chance for survival, but a large number of infant deaths are still due to heart abnormalities, a category that includes at least 35 different malformations.

While medical care has improved, there are still problems.

``There is a great deal of emotional stress related to having a child with heart problems,'' Monk said. ``Add that to the fact that most of the time your family and friends haven't been through a situation like this either, and have little or no information about what to expect before, during or after surgery, and you have a real need for support groups.''

One is an Internet group called PDHeart, which organized today's awareness effort. The group's Web page can be found through Hot Links at juneauempire.com.

Because there is no pediatric cardiologist in Alaska, Monk said, Max's surgeries have been performed at the Heart Center of Children's Hospital in Seattle.

Some children with heart defects don't need surgery, but many will face one or more operations. Many children also face complications from surgery, such as strokes or developmental delays.

Max spent two of his first three months in the hospital, and as a result had some developmental delays. Also, because he was fed through a tube for an extended period, he has only now mastered eating normally. Overall, however, he has caught up to his contemporaries and is doing well, Monk said.

Additional information about congenital heart defects is available from the American Heart Association at (800) 242-8721.



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