Charlotte's Journey Home

Just a Regular Kid, Sort Of

About

In January 2005, our unborn child was diagnosed with Truncus Arteriosus, an uncommon, complex heart defect.  On May 9, 2005, our daughter Charlotte was born (4 weeks early).  Her heart was repaired by the incomparable Drs. Gus Mavroudis, Carl Backer, and Bob Stewart on May 16, 2005 at Children’s Memorial Hospital in Chicago, IL. Charlotte spent 49 days in the PICU and then came home to us, loaded with oxygen, a feeding tube, and lots of medications. Since then she has had two angioplasties, a feeding tube (come and gone), ear tubes, and a lot of other boring medical things. Today she is a healthy, happy nearly ten-year old.

This blog began when Charlotte was first in the hospital as the diary and continuing updates of Charlotte’s journey through her first surgery to life as a regular kid. Today I continue to blog about Charlotte, even though she leads a fairly regular life. Occasionally, like this spring, we come back to the medical updates and the blog’s original raison d’être. Nowadays, I have to ask Charlotte’s permission to post a picture, and I’m a bit sensitive about what details I post as she hits puberty and the complications that being a heart patient adds to that already complex emotional stage.

Charlotte sees the world through eyes filled with wonder. She is creative, kind, non-judgmental, and quick to forgive. Through her actions and observations, she teaches me that we are born that way, and that it is our experiences in the world that harden us toward each other and our surroundings. She reminds me that it is important to be childlike–full of wonder, kind words, forgiveness, creativity.  Sometimes she is quite childish and it drives me crazy.

I share her world with you–with the occasional medical update as necessary–to continue to show you Charlotte’s heart, not just the one the doctors fixed, but the one that makes her our extraordinary daughter.

(updated on 2/22/2015)

16 thoughts on “About

  1. My son has truncus, I would like to connect with another truncus mommy!

  2. Hello brave parents — I am the mother of another 8 year old child with a congenital heart/chest condition, and we are also in the Chicago area, scheduled for surgery at Lurie in April. Is there any way for me to connect with you via email to ask some advice? Your blog is absolutely wonderful – Charlotte is a really lucky kid to have landed in your family!

  3. Pingback: Why I Blog (about Charlotte) | Charlotte's Journey Home

  4. I too, have a son with truncus. I have been looking for other “truncus mothers” for awhile. Glad I found your blog. Keep in touch. 🙂

  5. Could I get in touch with you about your experience with CHOW’s feeding clinic? Thanks! teacher pippi @ yahoo

  6. Hello there, my name is Andrew and I have Truncus Arteriosus too! Unlike Charlotte, I’m 24 years old, but still relate to everything she’s been through. I’m attempting to do out-reach with other people effect by CHD. I’ve never met anyone else with Truncus so this is very exciting to me! I Would love to speak with you, if you’d be interested.

  7. This is an amazing account of you and Charlotte’s journey. Thank you for sharing! I am going to include this in my weekly roundup to connect others to learn more about Truncus Arteriosus!

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