Tyler is a 2 year old beautiful girl that was born with an extremely rare and complex group of congenital malformations, referred to as cloacal exstrophy. She was born with her bladder and intestines on the outside of her body. Numerous surgeries have replaced most organs within her body, however, her bladder is still on the outside. She has a colostomy and has an open bladder on her lower abdomen. Tyler has undergone eight major surgeries to repair her malformations, and will require more in the future.
Due to the complexity of her situation, she requires a tremendous amount of care at all times, to keep her functioning normally with respect to her bowel and bladder function. The success of her care is predicated on her care-givers having a thorough understanding of her situation, and all that it implies. She is at risk for dehydration, urinary tract and intestinal tract infections and obstructions, and has suffered significantly from these problems in the past.
Tyler has been considered a miracle child. She has made tremendous developmental and medical gains since her birth. They never thought she would walk but due to therapeutic services, Tyler is currently walking, climbing, feeding herself, coloring, doing puzzles, playing with dolls and doing all the other things children at this age should be doing. Due to all the surgeries and feeding tubes that she needed in the past, her language is delayed.
Since, Tyler’s birth, her mom had to leave her job in order to care for her daughter, as well as, be available for her home care services and therapies. As a single parent, with no income she moved in with her mother
Due to the rarity of her disease Tyler will need future reconstructive surgeries in out of state hospitals. The hope is that if she gets these surgeries in the next few years she has the potential to live a normal life. Tyler has Medicaid for her health insurance but this does not cover all her medical supplies or expenses.
