Reign was born prematurely. She was diagnosed with Dandy Walker Syndrome and Hydrocephalus. I only knew one person with this condition as I was growing up. A young man in high school that people called, “water head.” I didn’t understand it at the time- but now I do. Once the doctors told me of her condition, I automatically knew what that meant. Brain Surgery. It was daunting to say the least.
I have since met numerous people who have VP shunts in their brains to treat Hydrocephalus. While brain surgery is scary, the shunt is the only treatment available- so far. Reign has had 2 revisions and we are not sure if she will need more in the future. As a parent, it is important to note your child’s typical behavior compared to not so typical behaviors. Teachers and caretakers should also be mindful of what is not normal behavior as it could be a shunt malfunction.
Hydrocephalus is a condition where excess fluid accumulates in the brain, creating pressure that can impact a child’s development and well-being. It’s a diagnosis that comes with countless questions and an emotional rollercoaster for families.
The Uncertainty of Diagnosis
Hearing the word “hydrocephalus” for the first time can be heart-stopping. The future suddenly feels filled with unknowns. Will your child face developmental delays? What will their day-to-day life look like? As parents, we instinctively want to shield our children from pain and difficulty, but this condition presents challenges that are often beyond our control.
The hardest part is the unpredictability. Hydrocephalus can vary greatly from child to child, and while some may only require monitoring, others may need surgeries or face long-term complications. The road ahead feels winding, and it’s easy to feel lost.
Finding Strength in Community
This is where Reignbows steps in. We know that no family should face these battles alone. Our mission is to walk alongside families, offering not only resources and information but also a network of support and understanding.
At Reignbows, we’ve met parents who’ve faced sleepless nights after surgeries, children who’ve bravely undergone treatments, and families who’ve navigated every twist and turn with an inner strength they didn’t know they had. Together, we work to create a space where families feel seen, heard, and empowered.
The Power of Togetherness
What makes hydrocephalus so difficult for families is the feeling of isolation—like no one around you truly understands the daily challenges. But through organizations like Reignbows, families find others who have walked a similar path. Sharing stories, offering a shoulder to lean on, and celebrating the victories, both big and small, become part of the healing process.
We celebrate the moments when a child takes their first steps after surgery, or when a parent hears their child laugh after a hard-fought battle. These are the moments that remind us why we’re here. Hydrocephalus may present its hurdles, but through it all, there’s a community of love and support.
Looking Forward
There will always be uncertainty with hydrocephalus, but what remains constant is the unwavering love parents have for their children. It’s a journey of adaptation, of learning to face each challenge as it comes, and of finding joy in the moments of progress.
At Reignbows, we are here for you and your family every step of the way. If you or someone you love is facing hydrocephalus, know that you have a community ready to support, uplift, and guide you.
Resources:
FactSheet_Primary_Care.pdf (hydroassoc.org)
Research | Children's of Alabama (childrensal.org)
Caring for Your Child With Hydrocephalus (hydroassoc.org)
Cause Color(s): Blue
Shop The Cause:
https://shopreignbowsonline.com/pages/causes
Join Our Support Group: