At about 20 weeks into my pregnancy, the doctors detected something wrong with Caitlyn but couldn’t definitely identify the issue. They did an amniocentesis and before getting any results counseled us that she had numerous issues and that they felt as though she would not have any chance of surviving. They offered to assist us if our regular OB/GYN did not provide the “appropriate” services. Upon our refusal to consider terminating the pregnancy, they began monitoring Caitlyn weekly to try to determine what issues they would be faced with at birth. She was taken by C-section at 36 weeks and spent 10 days in the NICU. She was immediately followed by an endocrinologist, urologist, nephrologist, pulmonologist, geneticist, as well as a pediatrician and the intensive care doctors. Her first operation came at 10 months followed by at least five operations over the next 2 – 3 years for issues related to her intestines/colon. There were several other operations wherein they went into surgery not knowing what they would be doing or what the outcome would potentially be. At almost 5, she had her major operation that involved the creation of a bladder for her. She spent 12 hours in surgery and about 10 days in the hospital. That same operation included removal of one kidney as well as a hysterectomy. Because of Caitlyn’s anatomy, carrying a baby could have been fatal. Since then, there has been two surgeries to remove large stones from her neo-bladder, 3 surgeries for issues related to her ovaries, a few more operations involving the intestines and colon, and one or two that I’m sure I’ve forgotten the purpose! Caitlyn continues to be followed most closely by her nephrologist in anticipation of a kidney transplant. The only kidney that she has had since 5 is dysplastic so there was always an expectation that someday she would need a kidney transplant. It’s quickly approaching that time. Caitlyn is currently experiencing acute kidney failure. She is on medication to address issues with phosphorous, calcium, acidity, and anemia – all things that are bi-products of her kidneys failing.

Despite all of this; however, she is very much ALIVE! And she has an infectious laugh and great sense of humor that is sure to bring a smile to your face!! Caitlyn is a great example of someone who lives her life to the fullest no mater what circumstances she may face. 

Shannon (Caitlyn's mom)