What You Need to Know

Kylie is a survivor of Twin to Twin Transfusion Syndrome (TTTS). TTTS is a prenatal condition in which twins share unequal amounts of the placenta's blood supply resulting in the two fetuses growing at different rates. She is an identical twin to her sister Kinley who is typical. Kylie has many diagnosis but the major ones are Hydranencephaly and Spastic Quadriplegic Cerebral Palsy. Hydranencephaly is a condition where the brain's cerebral hemispheres are absent to a great degree and the remaining cranial cavity is filled with cerebrospinal fluid. Shorter words - her brain is mostly gone and the space is filled with fluid. Some humans are created this way in the womb, this was not the case for Kylie. This is the result of being a victim of TTTS where the damage was so great her brain diminished. We were told she would never Walk, Talk, Eat by mouth, or know who we are. We call her a Bee because that is the representation of Hydranencephaly. The Bumble Bee aerodynamically should not be able to fly, but it flies anyway. Humans with Hydranencephaly should not be able to live, but they live anyway. This blog will talk about my life with her, the struggles, the miracles, the thoughts of a special needs parent and everything in between.

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