Charlotte's Journey Home

Just a Regular Kid, Sort Of

Congenital Heart Defect Awareness Week

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Congenital heart defects are the leading cause of infant mortality in the United States. CHD affects 1% of all newborns in the U.S. and are responsible for more deaths in the first year of life than any other birth defect.

Truncus arteriosus is rare among these–according to CDC statistics, 0.72 live births in 10,000 have TA. That’s around 300 children each year. Consider that Prentice Women’s Hospital, the hospital where Charlotte was born, delivers more than 10,000 children each year. and you can begin to get a sense of how few children are born with this defect.*

A recent-ish study demonstrated that truncus arteriosus is one of the most expensive hospitalizations of any defect. An average neonatal stay is $192,781. Average hospital stay is around 21 days.* (Recall that Charlotte’s first stay was 49 days; she was above average even then!) Charlotte’s most recent hospital stay, an angioplasty that required only one overnight stay, came in at more than $66,000, so I’m guessing that her neonate stay was much higher than average.

On the left, a normal heart. On the right, a TA heart. note that there is no definition between pulmonary and aortic trunks (what is purple on the right is blue or red on the left, indicating oxygenated/de-oxygenated blood mixing.)

90% of newborns survive their first repair. The degree of complications after that surgery is hard to track, I think. It depends on how much damage the heart suffered prior to repair (for Charlotte, minimal, thank goodness), what other underlying medical issues are there, and (I think) each child’s individual constitution.

Those are the CDC stats, the numbers that parents seek out when they first hear those life-changing word, “The ultrasound shows…” After that other numbers take over, ventricular performance, pulse ox, weight, medicine dosages, food intake, months to next surgery, etc.

Parents seek out other parents, and in 2005 that was hard to do.  While I try to avoid medical advice and information on the internet, I have relied on it for reflux support and I am proud that this blog has given it to other parents facing Truncus Arterisus and other CHDs.

To celebrate and raise awareness, I’ll spend the rest of the week writing about CHD, community and support. I’ll talk about two of my favorite CHD parents–Tommy Riles and Francie Paul–who have taken inspiration from their children’s medical difficulties to raise awareness and money for children born with congenital heart defects. I’ll talk about how the new Ann and Robert H. Lurie Children’s Hospital of Chicago makes a difference every day for parents and kids facing CHD, both the facility and the US News & World Report-rated Cardiology team. And I’ll end with Charlotte’s post-catheterization check-up, serendipitously scheduled for Valentine’s day.

If you are a parent of a CHD child, or have a CHD yourself, I invite you to tell your story in a comment, and/or add a link to your own blog.

mended heart

*CDC.gov, National Institutes of Health

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Author: Culture Bean

I am a mother, a pre-published children's author, and a published academic. I am also a "mommy blogger," though I hate the term. My passions are reading and writing. As a professor, I strive to help my students think critically about the media and culture with which they engage. I've started this blog because it's time I put my money where my mouth is!

2 thoughts on “Congenital Heart Defect Awareness Week

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