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.
  • More Local NewsNewsMore>>

  • Local students to compete in National Junior Olympic Track & Field Championships

    Local students to compete in National Junior Olympic Track & Field Championships

    Thursday, July 20 2017 10:08 PM EDT2017-07-21 02:08:26 GMT

    While most kids are enjoying their summer vacation in the air conditioning, five local students are spending their time training in the hot sun, getting ready for the National Junior Olympic Track & Field Championships next week.

    The competition is where many of today's Olympic stars started their careers. 

    More >>

    While most kids are enjoying their summer vacation in the air conditioning, five local students are spending their time training in the hot sun, getting ready for the National Junior Olympic Track & Field Championships next week.

    The competition is where many of today's Olympic stars started their careers. 

    More >>
  • CPSO: How should you react when pulled over with a firearm in your car?

    CPSO: How should you react when pulled over with a firearm in your car?

    Thursday, July 20 2017 9:50 PM EDT2017-07-21 01:50:54 GMT
    (Source: Legally Armed America)(Source: Legally Armed America)

    The Calcasieu Parish Sheriff's Office has teamed up with Legally Armed America to create an instructional video on how you should act if you get pulled over and have a firearm. The video demonstrates the difference between a compliant and non-compliant driver. It also explains some dos and don'ts if you have a weapon on you when you get pulled over. The video can be found HERE. Copyright 2017 KPLC. All rights reserved. 

    More >>

    The Calcasieu Parish Sheriff's Office has teamed up with Legally Armed America to create an instructional video on how you should act if you get pulled over and have a firearm. The video demonstrates the difference between a compliant and non-compliant driver. It also explains some dos and don'ts if you have a weapon on you when you get pulled over. The video can be found HERE. Copyright 2017 KPLC. All rights reserved. 

    More >>
  • Alliance for Positive Growth opposes parish drainage ordinance, at least for now

    Alliance for Positive Growth opposes parish drainage ordinance, at least for now

    Thursday, July 20 2017 9:35 PM EDT2017-07-21 01:35:24 GMT

    Most want to see positive growth in southwest Louisiana. Yet some have positively had it with growth they think is causing flooding and drainage problems.                 

    More >>

    Most want to see positive growth in southwest Louisiana. Yet some have positively had it with growth they think is causing flooding and drainage problems.  

    More >>
Powered by Frankly