Friday, February 8, 2013

Congenital Heart Defect Awareness Week

Before Cora was born, heart defects were not something I thought much about.  A few years ago, a friend's new baby had open heart surgery with success, but it still felt like something that hadn't touched me personally.  All that changed when we were told that the reason our one day old baby was turning blue was because she had a serious heart defect that would require open heart surgery between 2 and 4 months of age.

Cora had a complete atrioventricular canal defect, which is one of the most common heart defects in babies with Down syndrome.

Research shows that without surgery, only 4% of children with complete AVSD (or complete AV canal defects) survive beyond 5 years.  In Cora's case, I sincerely doubt she would have survived to four months old.  She was in serious heart failure at the time of her surgery at 11-1/2 weeks old.

Of all the blessings in my life, I am most grateful for Cora's successful heart surgery.  Without surgery she would have had no chance at a life. 

Congenital heart defects are the most common types of birth defects.  Almost 40,000 babies are born with CHDs in the United States each year.  For children with Down syndrome, the incidence is much higher than the typical population.  Current information shows that approximately 40-60% of babies with Down syndrome have a heart defect.  About 35% of these children have AV canal defects like Cora.  Some of the more minor defects will repair themselves without surgery, but many require surgery.

Knowing that your tiny baby will have open heart surgery is something that no one wishes for their family.  In fact, many decisions to terminate pregnancies with a prenatal diagnosis of Down syndrome are due to the presence of a heart defect.  But as I have learned, the prognosis for children with Ds and a heart defect is very good.  Most defects can be successfully repaired surgically or resolve on their own in time.  Although stressful and painful, a diagnosis of Down syndrome and a heart defect is not as dire as it once was.

Since Cora was born, I have been in touch with so many other families whose children have undergone open heart surgery.  Some of them feel almost like family.  Many of their stories helped me as I prepared for Cora's surgery, and they inspired me to do the same for other families down the road.  I began to compile a list of blogs, stories and advice written by other parents of children with Down syndrome who have had surgery.  I only hope that our story and the stories of other families like ours can continue to help others who will go through this experience in the future.

If you would like to share your family's story about Down syndrome and open heart surgery or congenital heart defects on this blog, I would be honored to post it here.


  1. That picture of Cora just breaks my heart. So many tubes, wires, and incisions. Btw, LOVE love love the new header.

  2. Great Post Leah! Spreading CHD awareness!

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  4. Congenital heart defects are the most common birth defects that may a child had to suffer. It is very heart breaking looking at this child in the picture. Sometimes we even wish for to replace them on their situation just to save them from pain. Spreading CHD awareness.

  5. Thank you very much for an interesting article on this topic. This has really made me think and I hope to read more.
    Zofran heart defects

  6. Enjoying reading your OHS posts as we prepare for our daughter’s coming up June 26th. Thank you for posting all the pics too— they help SO much!


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