Never heard of Heterotaxy Syndrome? It is a rare birth defect that involves the heart and other organs. The beginning of the word (hetero-) means “different” and the end (–taxy) means “arrangement.” There are different forms of heterotaxy syndrome. All usually involve heart defects of varying types and severity. You can read more about it here: CHoP
This is how it has become a part of our lives. Follow me, because this may be a bit confusing.
Delaney was born 10/22/13 in Kenosha, WI and was transported to the NICU at Children's Hospital of Wisconsin, Milwaukee a few hours after birth. Two days later she was taken into the Cath lab where her heart was perforated and she ended up on an ECMO machine. For the nature of her care, she was in the CICU, Cardiac Intensive Care Unit. While we were there we had, what we would have called classic bad luck, and our electricity was turned off at our home due to an error. I was sobbing on the phone with the Electric Company, begging them to turn the electric back on because I had pumped breast milk in the freezer for my critical daughter and I couldn't lose both her and the milk in the same day... and this woman asked me if she could help.
You see, her daughter had been born a few days earlier and was in the CICU because she had HLHS (her heart didn't completely form and she was born with basically half a heart). HLHS wasn't her daughter's only diagnosis, she also was born with Heterotaxy Syndrome. I'd never heard of either condition at that point in my life. Although she was in a tremendous amount of stress with the uncertainty of her daughter's life, she reached out to help us!
After Delaney passed away we stayed in touch.
It was amazing to see their daughter "B" grow and get stronger and go home and become a person, an honest to GOD person. I had the pleasure of meeting "B" when she was 2. One of the hardest moments of my life since Delaney passing away.
Anyway, back to my reason for today's blog post. B's mom Kristen was able to get our Governor to acknowledge May 4th as Heterotaxy Day a few years back, she wanted to bring awareness and fund research and help these special kids live full lives.
I finished the inside of my card with a simple restamping of the main image in the Tide Pool color. I cannot wait to write a message in this to a little girl who is stronger than she thinks.
Paper from DCWV, AC, & MFT
Ink from Lawn Fawn
Pearls from A Muse Studio
Coloring with Copic Markers
*** Please leave Miss B a comment below, I'm sure her almost 4 year old self would love to know you are all thinking of her and others with this rare disorder***