Dear parent of a child living with hydrocephalus,

When my 7-year-old son was a baby in the Neonatal Intensive Care Unit (NICU), he was diagnosed with hydrocephalus. Shortly after birth, our child had bleeding on both sides of his brain. Doctors explained that even though there was no cure, there was a life-saving device called a VP shunt that would relieve the pressure on his brain. 

My husband and I could not begin to understand what having a child with this medical condition would mean for the future of our family. Surreal did not begin to describe the feelings. His VP shunt was placed at 2 months old. Between the ages of 2 months and 5 years old our child went through several shunt revisions, a shunt infection and replacements. He has had many ER visits, and hospital stays due to hydrocephalus-- some were minor and some serious. 

We had the greatest neurosurgeon at Children's National. She explained the details, answered every question, warned us about false information on the internet, and how to find reputable websites. We worried about his quality of life and at the end of each of our conversations she reminded us of the great possibilities. We were told many children live long and fulfilling lives. 

Through all of the experiences, we learned not to doubt ourselves. We have many family members and friends alike who regularly doubt the seriousness of our child's condition. They feel that our behavior is melodramatic. Often their opinions make us feel as if we are overreacting to the symptoms of shunt malfunction since they closely mimic a "stomach bug" or "exhaustion."

My advice to others taking care of a child with hydrocephalus is to listen and trust yourself. It could be a stomach bug, but it could also be pressure on the brain. You know your child the best. If you have the slightest concern, go to the ER immediately, and do not feel like you will be looked upon as an overly sensitive parent. My husband and I always close our ears to the outside noise and act on our gut feelings. The staff at Children's are great listeners and will quickly address your concerns no matter how minor you think they are. We've had a few false alarms and we've had a few major issues that required immediate attention. Trust your instincts, and whenever possible surround yourself with a positive and understanding support team. Find people who will not overlook the seriousness and who are not afraid to step in when you need help the most.

Today my son is a happy little guy who loves to read, spell, and talk about historical facts. He is the oldest of our three boys. He sings, dances, and flips around on his head more often than I'd like him to but he is not limited in his activities. He has not had a problem with his hydrocephalus or shunt in more than a year. The older he gets, the easier it gets because of his communication. 

We go about our daily lives without worrying about complications. Hydrocephalus does not define who he is. We are all stronger and less fragile than we ever imagined possible. 


Omari's Parents, LaRonda and Tee



Video: Hydrocephalus, A Parent's Story

Neurological disorders - Letters


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