Savannah's Heterotaxy Heart

Savannah H. is an energetic little girl who deserves the best life has to offer in spite of her multiple diagnoses which include 8 congenital heart defects, Heterotaxy Syndrome (more info below), various learning and speech disabilities, oral aversion, autism, a compromised immune system, and many others.

Heterotaxy Syndrome consists of multiple complications that stem from her body’s inability to properly orient a left and right side. Plainly, some of Savannah's internal organs are missing, and others are not completely formed and are in the wrong place.

The most severe complication is with Savannah's heart. She has dextrocardia. In basic terms, it means that her heart formed on the wrong side of her body. In Savannah’s case, her heart is essentially flipped 180 degrees over a nose to navel axis resulting in her heart being on the right side of her chest and flipped over.

In the process of forming on the wrong side of her body, her heart did not develop properly. Most people have four well defined chambers in their heart. Savannah is missing key parts of that four chamber heart structure. There are also issues with the arteries and blood vessels going to and from her heart.

She has had 2 open heart surgeries, 9 heart catheterizations, and is pacemaker dependent. She will face more heart surgeries in the future.

Adding to her condition, Savannah’s spleen is entirely absent. Without a properly functioning spleen, Savannah’s immune system is compromised. This means the family exercises extreme caution during cold & flu season and locked down completely during the COVID-19 pandemic.

She was intubated and in the Cardiac ICU recovering from open heart surgery when most children learn to chew and swallow food, so she has had to be taught this "normal" skill at a much older age. After several years of feeding therapy, she is finally moving beyond ultra-pureed foods (that took days to process) and starting to consume more solid food. She needs constant coaching and encouragement to consume enough calories per meal, a single meal sometimes taking her a few hours to complete.

Savannah has a receptive and expressive language disorder. This means that she takes much longer to process verbal input than most people and she often knows how she wants to respond but she is unable to find the words so that she can express it. She has an assistive speech device and is in speech therapy 3 times a week. (Plus 6 other therapies a week. Her schedule is intense!)

She was recently diagnosed with autism. She also got a long list of other diagnoses from this testing, most of which commonly occur with an autism diagnosis. Most of these have to do with her extensive language issues and her anxiety. Her communication and language issues complicate a wide variety of things and make accurate evaluation of other areas difficult.

By February 10th of this year, her family had already reached their medical insurance's annual $8,000 deductible. That's after a mere 5.5 weeks.

Savannah is so much more than just a long list of diagnoses though. She loves space, unicorns, rainbows, and Minions. She is very creative and enjoys playing with Legos, markers, and stickers. She also loves spending time at the lake and riding in her grandpa's boat.