When Candice went into labor with her first child, she never dreamed that she would soon be saying “good bye.” She has written about her journey of love and loss of her son Alex in the hopes to raise awareness for Hyplo-plastic Left Heart Syndrome. Today she explains the heart defect and offers links to further information for parents.Read the entire series here.
A Guest Series by Candice DeLeeuw
Unfortunately there are no known causes for HLHS (Hypo-plastic Left Hear Syndrome) or any other heart defects. According to the CDC, heart defects are not only the number one birth defect, but the number one cause of death among infants. HLHS occurs 1 in every 4,344 births. Medscape reveals it is more prominent among males, 55-70%, but does not favor a race/nationality.
Hypo-plastic Left Heart Syndrome, unlike a regular heart that has four working chambers and four valves, only has three working chambers and two healthy valves. The left side of the heart’s job is to pump the oxygenated blood that just returned from the lungs to the rest of the body. Because the heart’s lower left chamber, as well as two of the valves are generally closed off, the body is not getting oxygen. For all intents and purposes, the left side of the heart is nonexistent.
Until 1983, there was no solution. After diagnosis, parents often took home their children to die in their sleep. There is a great discussion on the positives and negatives of each through the eyes of a parent of HLHS on
There are many wonderful websites out there that clarify and describe the 3-staged surgery: Norwood, Glenn, and the Fontan. I personally like the videos on the Children’s Hospital of Philadelphia Web site.
My hope for every parent that is if this is what their child has, they find out in utero. Although it will be heart wrenching for the parents and will probably worry the rest of the pregnancy; knowing ahead of time provides a lot more thought into their decisions. For example a parent can decide what they would prefer to do ahead of time: the three-staged surgery or a heart transplant. Parents can also research the best hospitals for their child’s heart defect with sources such as US News Best Hospitals of 2012.
Another good spot to find information is on the Hypoplastic Left Heart Syndrome Information Page.
Regardless of when a parent discovers their child’s heart defect, they will need support from people who have been there. Here are some great support groups:
· Little Heart Matter: http://www.lhm.org.uk/
Find support, share your story, get involved in different events. Worth checking it out!
· Congenital Heart Defects.com: http://www.congenitalheartdefects.com/chd-cci.html
Contact information for other parents with heart defects who you can e-mail.
Centers for Disease Control and Prevention (2011) Birth Defects Data and Statistics . http://www.cdc.gov/ncbddd/birthdefects/data.html
Medscape News (2012) Cardiology http://medscape.com
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