3-Year-Old Kaylie Mae Lingor From Texas Selected as 2020 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

Kaylie Mae was born April 15th 2016. Our sweet Kaylie had a fast-paced entry into this world. When we were 20 weeks pregnant with Kaylie, she was diagnosed with Myelomeningocele Spina Bifida as well as Hydrocephalus.

The day she was born she had surgery to close her back and since the amount of fluid on her brain was substantial, she had to have a shunt immediately placed. During her 9 weeks in the NICU, Kaylie had quite a fight. A couple weeks into healing she had her first shunt malfunction, then two weeks following that surgery she had another shunt malfunction.

A few days after the second malfunction, she was diagnosed with meningitis and was rushed back into surgery and had an external shunt placed. After about a week with an external shunt she went back into surgery to have another internal shunt placed. The shunt had to be placed on the left side due to how many surgeries she had on the right side of her head so that she could heal properly.

Finally,12 days after that was placed, at 2 months old, we finally got to take our baby girl home.

Three months after she was discharged, she did have another revision. She has stayed our strong happy sweet girl through everything she has gone through so far in her almost 4 years of life.

Since that revision she has not needed another revision and we hope she does not need one for a long time. Since October 2016 Kaylie has had 7 more surgeries for various things from tubes for her ears, surgery on her feet and back to a major Cranio reconstruction (due to being diagnosed with Craniosynostosis).

Kaylie is so very outgoing and does not know a stranger! She is the sweetest little girl and little sister. She is our hero and inspires us everyday. We are so thankful and honored she choose us as her parents.