Etta's Heart Book

Juana is co-proprietor of the wonderful Etsy shop The Black Lantern Studios along with her husband, Jesse.  She saw my eco-friendly science-themed baby books and had an idea.  Her 4-year-old daughter Etta was born with hyperplastic left heart syndrome and has undergone several open-heart surgeries (you can read about her experience on her blog).  Juana realized that a cloth book about Etta's heart might help Etta process what she had been through, so she asked me to make one for her, and I enthusiastically agreed.  Juana then patiently described the procedures and surgeries to me and I spent some time learning about the heart.  In doing so, I gained a new appreciation for it.  I hadn't fully realized until now that the heart is simply a pump (a very important one) to get blood from the body to the lungs and out to the body again.  I also didn't appreciate heart surgeons the way I should.  They have figured out amazing work-arounds for hearts that don't function properly. 

I loved the challenge of this book and I'm very grateful to Juana for asking me to make it.   I couldn't wait to finish it so I could tell you about it!  Would you like a tour of the book?  Here goes.  The cover shows Etta's heart at birth.

The small light-pink blob is her left ventricle, which should be much larger.  The dark-pink candy-cane is her aorta, which was too narrow at the top.

The first page is a chest x-ray.  Etta had to get several, and for reasons that are unclear to her mother, she was especially unfond of them.  

The next pages show a heart catheterization (left, yellow stitching) and the Norwood surgery with sano shunt and corrected aortic narrowing (right).

The last page combines a couple of surgeries: bi-directional Glenn and fenestrated Fontan.  In effect, this page gives an idea of her heart at present.

Do you see what I mean about heart surgeons?  Amazing!  But what I find even more amazing is the spirit of Etta and her parents, Juana and Jesse.  They have endured so much and yet from reading their blog and from our written communications it is very clear that this family is living with joy and that they are full of gratitude for the blessings they have.  Truly inspiring to me.

When I sent the book off, a piece of my heart went with it.





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