Book on babies' heart defects available

August 10, 2009 Many babies who survive have to undergo several surgeries from the time they're born. We're talking about congenital heart defect. It can range from not-so-serious to life threatening. And along the way, for the family, it is a long emotional journey.

Like a typical 3- year-old, Kathleen Conzemius is willing try all challenges on the playground, especially when her older brothers are running ahead. But unlike a typical child, with every step Kathleen takes, she is proving that congenital heart defect does not have to defeat life.

"She'll never be a long-distance runner or the fastest kid in class, but she'll hang in there. She knows when she's winded, and she'll take a breather and get right back in there," said mom Tegwen Conzemius.

For Kathleen's mom and dad, it was a shock to learn after having two healthy boys, that their third child would be born missing the lower left chamber of her heart, that she would have to go through surgery at 4-days old. The diagnosis was made when Tegwen was 20 weeks' pregnant.

"Your ears ring, can't believe you're hearing it, I called Jim," Tegwen Conzemius said.

"It was a whirlwind, walking on air, didn't know quite what to think," said dad Jim Conzemius.

What most people may not know is that congenital heart defect is the number one birth defect in America affecting 40,000 babies every year. In fact, every 15 minutes of every day, a baby is born with a CHD and a family is thrown into uncertainty and fear. But many are now finding a helping hand through a book called "It's My Heart" by the Children's Heart Foundation based in Chicago.

"It is so scary to have your infant, toddler, teen go through open heart surgery you talk to the doctors and everything is so medical, this book is really written for parents," said Megan Van Pelt, Children's Heart Foundation president.

Van Pelt's own son was born with a heart defect. He is now waiting for an aortic valve transplant. Van Pelt hopes the book will not only provide more resources, but also raise awareness about this common medical crisis facing so many families like the Conzemiuses. For them, there are still many questions yet to be answered.

"What does the future bring? We don't know; they don't have a volume of kids 70, 80 years old they don't know we're here because of people who did research in the past, hopefully they'll continue to do research and make it easier for other families going through this," said Jim Conzemius.

Kathleen has gone through three surgeries, and doctors don't know for sure if she'll need any more. The research is continuing.

Excerpt from the book, "It's My Heart":

This book is for patients and families affected by congenital and acquired heart disease. It is a resource guide and workbook to be used with medical professionals. It is not a substitute for your child's physician. Never hesitate to direct any questions or concerns about y our child's heart problem to your pediatric cardiologist….no question is too simple or silly. You know your child better than anyone. Don't be shy about calling your child's physician to discuss any concerns. If your child looks different, acts different, or is having difficulty eating, always call.

Also, know that you are not alone. Approximately 40,000 babies are born in the United States each year with congenital heart defects. That represents about one in every 115 births, topping the list as America's most prevalent birth defect. There are many ways in which the heart can develop abnormalities. Genetic and environmental factors have been linked to congenital heart disease. But in most cases, the cause is unknown.

There are two categories of heart abnormalities - congenital and acquired. Congenital heart disease means the child is born with an abnormally structured heart and/or large vessels. Such hearts may have incomplete or missing parts, may be put together the wrong way, may have holes between chamber partitions or may have narrow or leaky valves or narrow vessels. With acquired heart disease, the child is born with a normal heart that malfunctions at a later time in life. Such hearts may pump poorly, be too stiff, infected, or may beat too fast, too slowly or too erratically. While most acquired heart disease occurs in adults, such as coronary and hypertensive heart disease, some children acquire heart disease, usually due to bacterial or viral infections.

To get a copy of "It's My Heart" for free or to find more information about congenital heart defect, go to WWW.CHILDRENSHEARTFOUNDATION.ORG

More information on the fundraiser August 15 for CHD can be found at WWW.SAVINGTINYHEARTS.ORG

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