Diagnosed at 18 Months

Danielle

Story Written by Author/Self

Congenital hydrocephalusI am now 41 years old and have had 2 shunt revisions. The first occurred at the age of 18 months. According to my parents, I would place each hand on the side of my head and cry often. My parents made an appointment at the pediatrician and the fluid on my brain was discovered. My parents were told that complications from this condition include developmental delays, speech and physical disabilities of which I have not experienced any to this day.

The second revision occurred at the age of 12. It was May Day at my elementary school and we were outside enjoying the festivities. I recall vividly turning my head and hearing something pop. Of course, I was focused on fun and nothing else, but by the time I tried to walk in the door of my home, the pain and pressure in my head was unbearable. I remember holding my head down and placing each hand on the side of my head, as so when I was a baby. I was rushed to the hospital and looked over and sent back home. After entering the house I attempted to lie down and could not due to excruciating pain. I was rushed to the emergency room and the fluid was discovered. That same night the shunt was replaced and, according to the doctors, if the surgery had not been performed that day, I would not have awoken from my sleep.

Upon returning to school with a wig on, students became curious and would play in my hair (the wig). It was extremely uncomfortable for me being in the 6th grade and wearing a wig, but I had to until my hair grew back. My mother was highly upset as I hated to go to school and wanted to stay at home until I could wear my own hair. She spoke with the principle and asked if she could address the entire 6th grade class. I remember it as though it was yesterday, the day that she spoke with the class. I was nervous because now they would know the truth.

We were called into the auditorium and I sat with my class while my mother told them everything; from birth through that day. I cried, but not by myself. The principle, teachers, and students cried with me and I gained friends that are still with me today. I’m thankful to God for that day because it made me strong.


Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: communications@hydroassoc.org with the subject line “Share Your Story”.

Become a Grassroots Advocate for Hydrocephalus today! Visit our Advocacy Action Center.