Iowa family shares story of having child with hydrocephalus in h - KPLC 7 News, Lake Charles, Louisiana

Iowa family shares story of having child with hydrocephalus in honor of Hydrocephalus Awareness Month

IOWA, LA (KPLC) - Nineteen-month-old Kinley Grace Jenssen looks like a normal baby at first glace, but she's not like other babies. Kinley was born with severe hydrocephalus, a medical condition that causes fluid buildup inside her skull that leads to brain swelling.

As a part of Hydrocephalus Awareness Month, Kinley's family is sharing the journey of living with what they call a "hydro baby" in an effort to help others just like them.

"When you're told that your child isn't normal or that something is wrong with your child, we were crushed," said Kinley's mother, Jill Janssen. "We were prepared for the worse."

In January, Kinley's hydrocephalus fluid build up caused serious swelling to her head when she was born. Her head measured 52 cm at just 32 weeks old, and she had to be delivered via C-Section.

"The shock of seeing her for the first time was, literally, it takes your breath away," said Kinley's grandmother Teddi Guillory. "We were told that she would never do anything. That she would literally be a vegetable."

To help alleviate the problem, Kinley had a shunt revision, a procedure commonly used to treat hydrocephalus, consisting of a narrow tube that allows excess fluid that has built up inside the skull to drain out into another part of the body. A procedure Kinley's mother says has served a great deal of help.

"She was able to move her head and started rolling over a couple months later," she said. "It's just been mostly exciting."

Guillory describes Kinley's journey as challenging and says "they've had their horror stories," but says having Kinley alive and well speaks for itself.

"Just everyday, it's something new that she does that she was just never supposed to do," said Guillory. "That is the most amazing thing in the world."

Kinley's family says they've reached out to support groups for families of loved ones with hydrocephalus like Hydro Angels Over America (HAOA), a non-profit organization that provides education, support, resources, and assists in finding medical care for infant and elderly with Hydrocephalus.

The family is also planning a walk to help spread information on the condition for Sept. 27 in Jena, La., in Kinley's name.

Kinley also has her own Facebook page called Prayers for Kinley Grace.

Copyright 2014 KPLC. All rights reserved.
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