Gaelle

My Journey Living with Hydrocephalus: Finding Strength and Hope

By: Gaelle

My name is Gaelle, and I was born with hydrocephalus. I want to share my journey to inspire others living with this condition.

From the day I was born, my life began with a challenge that would shape my entire journey — hydrocephalus, also known as “water in the brain.” It’s a condition that occurs when cerebrospinal fluid (CSF) builds up within the brain’s ventricles, causing increased pressure. Treatment almost always requires brain surgery to insert a shunt or perform an endoscopic third ventriculostomy (ETV), to divert the fluid to another part of the body where it can be absorbed.

I underwent my first ventriculoperitoneal (VP) shunt surgery as an infant in Haiti. The procedure was performed by Dr. Ariel Henry, who at the time was a neurosurgeon and later became the Prime Minister of Haiti. I am deeply grateful for Dr. Henry and the entire medical team that continues to monitor my health today.

It’s also important to me to recognize the pioneers whose innovations made my surgeries possible. Engineer, John W. Holter, developed the first practical silicone one-way valve—known as the Holter valve—which became the foundation of the modern shunt system. Inspired by his son, Casey Holter, who was born with hydrocephalus, John Holter collaborated with Dr. Eugene Spitz at the Children’s Hospital of Philadelphia to successfully create a shunt that diverts the fluid from the brain to the abdomen. This groundbreaking invention in the early 1950s revolutionized the treatment of hydrocephalus and has saved millions of lives worldwide.

Years later, I faced another turning point in my journey. During a hospitalization in Florida for kidney failure, I underwent my second shunt surgery. It was a difficult time, both physically and emotionally, but it reminded me of how fragile—yet resilient—the human body can be.

Today, I’m cared for by a team of doctors, including a neurologist who monitors my shunt to ensure it’s working properly—something I’ve only recently learned to truly appreciate.

Throughout my life, I’ve spent countless hours in emergency rooms (ERs), each visit felt like another chapter in my story. There were times I missed birthdays, holidays, and celebrations, but I’ve come to understand that even in those moments, there’s purpose in the struggle. My journey taught me compassion, patience, and gratitude for the small joys in life.

If it weren’t for the surgeries that saved my life, I wouldn’t have been able to experience some of the things I’m most proud of, like attending Everett High School, publishing my first medical article for Boston Medical’s official Instagram page and the National Kidney Foundation website, and teaching others about urinary health through my WhatsApp group.

Hydrocephalus has shown me that strength isn’t about avoiding pain—it’s about growing through it. My experience has inspired me to serve as a representative, advisor, and mentor for children with disabilities, sharing my story to encourage others who are living with chronic health challenges.

I’ve learned that life with hydrocephalus may be unpredictable, but it’s also full of hope and purpose. Each surgery, hospital visit, and challenge has shaped who I am today—someone who believes that healing begins with knowledge, community, and courage.

I am grateful for every doctor who helped me, for every moment of recovery, for the innovators who made this technology possible, and for the faith that kept me standing. Hydrocephalus is not the end of my story —it’s the beginning of my purpose: to help others live with strength and hope.

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