Drawing Heart

***I am not a nurse or doctor, nor have I received any formal medical training.  Any and all medical related information on Drawing Heart Project is the product of a mother’s desperation to understand and advocate for her child.  This blog is the culmination of countless hours of independent research and medical consultation and is meant only to communicate my understanding of Alexander’s condition.  It is not intended as medical advice.  As always, seek the advice of a qualified medical professional to explain your specific diagnosis.***

 

From the moment Alexander was born he was making doctors ask questions.  Because of fetal imaging we knew he would be born with d-TGA (dextro-Transposition of the Great Arteries).  Traditionally, these infants have been called “blue babies” as the circulation did not allow oxygen into their blood and to their bodies.  Alexander was born pink and continued to be.  Doctors knew something else must be occurring for him to be so well oxygenated.

Within hours, Alexander was the main attraction in the NICU/CICU.  Every doctor came to look at him, tons of imaging was done, nurses were constantly puzzled about his true condition.  We had one doctor that consistently drew pictures for the other staff, trying to communicate Alexander’s entire heart status.  Terminology was constantly thrown out, and Matt and I weren’t nearly as educated on the topic as we are now.

At eight days old, they prepared to take him into surgery for the first time.  The cardiac surgeon talked to us about his conditions and the surgical plan when he spoke the words that inspired this project.

“He’s unique; no other like him.  You won’t find a picture of his heart in a book or online.  He’s as rare as they come.”

That upset me.  How could I, a “normal” parent, understand when the doctors are not only delivering diagnoses that I’ve never heard of, made up of multiple words that each need a google search, but have no real illustrations to go with it?  How could I grasp Alexander’s entire condition “blindly?”

The answer was a long amount of time, a ton of research and, eventually, sketching his anatomy.  It brought a great amount of confidence understanding his condition and being able to communicate it.  I’ve found myself sketching the same heart pictures over and over, refining them, explaining his special heart to the newest doctor.

That brings me to now, and the project that’s known as “Drawing Heart” on my hard disk.  I realized that if I had trouble understanding Alexander’s condition, others must have as well.  I decided that I would draw the structures and conditions that have become so familiar to me in hope that others would be able to better understand by looking and reading my own interpretations.  My goal is to raise awareness and understanding for all things heterotaxy.

For now I’ll just leave my drawing of Alexander’s special heart when he was born(so now a picture of it can be found online!), but I will explain it in a later post.  I hope “Drawing Heart” brings attention and increases understanding.