From the Heart, part 1 in a series

I’m very excited to be able to share one of the most remarkable and inspiring stories of modern medicine. It’s the story of congenital heart disease.

Let’s begin with a little background. Congenital heart disease refers to a problem with the way the heart is formed. Hearts can develop with holes between the chambers, small or fused valves, underdeveloped chambers, or abnormal connections between parts of the heart. It can get extremely complicated.

It’s amazing to realize that the heart is already fully formed only eight weeks after conception – often before a woman even knows she is pregnant. We don’t understand why the heart sometimes doesn’t form in the normal way. Occasionally heart malformations can be passed from one generation to the next within families, but not always. It isn’t clear whether medications, drugs, stress, diet or other factors might also be behind these changes.

We do know, however, that every year a million babies are born with a heart defect. It surprises many people to learn that congenital heart disease is the most common birth defect in children. It affects more children than cystic fibrosis, muscular dystrophy and all forms of childhood cancer combined. Despite all of the extraordinary advances in the care of children born with a heart defect, congenital heart disease is still the No. 1 cause of death in children younger than 1 year.

Next time I’ll share the difference between a heart murmur and a congenital heart defect and begin the inspirational story behind the field of congenital heart disease.

Laurie Armsby, M.D.
Associate Professor of Pediatrics, Division of Pediatric Cardiovascular Medicine
Pediatric Interventional Cardiologist
OHSU Doernbecher Children’s Hospital
OHSU Pediatric and Adult Congenital Cardiac Catheterization Lab

 

 

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Comments

  1. I’m really excited that you’re blogging about this Dr. Armsby. I’d love to interview your for my website if you are interested.

    Thanks!
    Amanda Rose Adams
    (author of Heart Warriors, A Family Faces Congenital Heart Disease)

  2. I’m the mom of a boy born with a congenital heart disease. My husband and I are so grateful for modern medicine. Since his defect was detected before his birth, he received proper care since day 1. After two surgeries and the installation of a stent when he was 7-months old, our, now, 16-month baby is doing well. He is energetic. It feels great to know that he has a long life in front of him.

    Here is a link to the only post I wrote about how I dealt with the whole thing.
    http://athome.kimvallee.com/2011/10/just-kim-what-i-learned-from-a-little-heart/

  3. Hi, Amanda. Could you email your contact information to socialmedia@ohsu.edu so I can forward it along to Dr. Armsby? Thanks! Anne

  4. Hi, Kim. Thank you for sharing your story with our community. We wish you and your son the best! -Anne

  5. As the mom of TWO children born with CHD, both PA-IVS, I am so happy to see this article!
    Our family’s story is posted here:
    https://www.facebook.com/#!/notes/dana-brock-hageman/what-does-it-mean-to-be-the-parent-of-a-child-with-a-heart-defect-from-anna-jawo/10150397046128633

  6. Thank you for sharing your inspirational stories. Your perspectives and experiences are so helpful to parents beginning this journey. Keep the comments coming!
    Dr. Laurie Armsby

  7. As a Mom of one of your patients who did not find out my child had a CHD until 14 years old, I am always looking for more information and a way to help other families who are facing the same thing. Does Doernbecher’s offer a support group for children and parents with CHD? I would be very interested in joining if so.

  8. Hi Tracy, Doernbecher doesn’t have a CHD support group, but we do recommend the Mended Little Hearts group. Thanks for the question! -Anne

About the Author

Anne Bell-Fysh is OHSU's social media specialist. You can connect with her via email at socialmedia@ohsu.edu.
Doernbecher Children's Hospital

Doernbecher Children’s Hospital

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