Charlotte's Journey Home

Just a Regular Kid, Sort Of

Congenital Heart Defect Awareness Month

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February was congenital heart defect (CHD) awareness month. Awareness campaigns, statistics, and information were everywhere. So, I decided not to write about heart defects in February.

Okay, I didn’t decide so much as not get around to it in time. But, never mind about that because in our little world, every day is CHD awareness day. I thought choosing a random day to write about it would have a bit more impact, make more sense in relating how CHD affects our lives.

We talk often about Charlotte being a gift, her results from surgery being exceptional, and the blessings we’ve experienced. That’s not just our perception. It’s the cold, hard fact.

Congenital heart defects are the leading cause of infant mortality in the United States. CHD affects 1% of all newborns in the U.S. Truncus arteriosus is rare among these–latest CDC statistics, 0.72 live births in 10,000 have TA. That’s around 300 children each year. Consider that Prentice, 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!)

And, the final stat for tonight: 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.

You’ve read our numbers for the past five years. So, I’ll end with our latest stats.

First, the one Charlotte would like reported–she lost ANOTHER tooth on Monday, bringing the grand total of lost tooth to five. Second, when we met Charlotte’s new pediatrician yesterday, we found out her latest “key” stats: Charlotte is 47 1/2 ” tall and weighs 46 pounds. She’s tall for her age and thin. (Duh, her tights fall down all day.)

Charlotte’s new pediatrician is in partnership with my high school friend who I have promised I will not again call “Danny” in the office. Old habits die hard! We loved meeting Dr. Mitchell. And we look forward to seeing if we agree with Dan that she is “the best doctor in the universe.” So far, so good!

*Data from CDC.gov and NMH.org

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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!

One thought on “Congenital Heart Defect Awareness Month

  1. Wonderful stats from the pediatrician! She's always been at the top. I guess the tooth fairy found her, too.

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