SAVANNAH

VACTERL

From Florida, United States of America

My name is Savannah Hottel and I am a VACTERL association survivor. I was diagnosed at birth and have been through over 20 surgical procedures since.
 
Growing up as a VACTERL child meant that I was not a “normal” little girl. Sometimes I struggled with that truth. However, I have realized that being medically different has given me a unique view on life. 
 
I look forward to encouraging others as a part of the WEM Resource Development Team and as a WEMbassador!
 
I am 24 now and I currently live in Florida, where I am pursuing environmental and marine science education for my degree and career.

Living with VACTERL association has brought unique life challenges and experiences.  I was born with 6 of the 7 characteristics of VACTERL, including all but limb abnormalities. Most of my surgeries to correct these anomalies were done before I turned two. However, I have been in and out of hospitals my whole life with countless tests and medical procedures. 
 
Throughout my childhood, I wanted to participate in activities, such as sports, summer camps, and sleepovers. My parents have always supported me and tried their best to make sure that I was able to do just that. 
 
Anytime a situation presented itself, where my medical issues could possibly hold me back, we found a solution. Sometimes we had to get creative. For example, I wore Pull-Ups, because of bladder incontinence, until I was a teenager. To avoid embarrassment, my mom was always thinking of creative ways to hide my Pull-Ups in my suitcase, while helping me pack for summer camps or sleepovers.

Despite my vertebral and renal anomalies, I was able to compete in sports, although non-contact activities, like swimming, ballet, and speech and debate, were preferred. 
 
Once I reached the age where my friends started noticing my scars and frequent trips to the bathroom, I became more aware of my differences. 
 
I can remember moments of bullying and feelings of insecurity. I have felt frustrated by frequent doctor appointments. I have been discouraged by the lack of awareness in the medical field concerning my birth condition, as I often must educate doctors before they can treat me. 
 
However, I know that I am blessed beyond measure, and that I am here for a reason. Therefore, I want to use the challenges I have faced, so far, and the knowledge I have gained to help others. 
 
The foundation of my support system is my faith and is built upon by my loving family and amazing friends. 
 

I have learned how important it is to have a strong support system, and I hope that I can be a part of that for someone else as a member of the Wellness Empowerment Movement.