Camden’s arrival into the world was filled with both hope and a sense of uncertainty. Born with an arachnoid cyst

By the time Camden was four months old, he had already undergone his first surgery—a fenestration. During the procedure, surgeons carefully opened the cyst to allow the fluid to drain and relieve pressure on his tiny brain. His parents were constantly by his side, their fingers intertwined, willing their strength to flow into their son. Camden’s grandparents, aunts, and uncles surrounded them, offering support and creating a web of love, prayers, and hope around Camden’s hospital bed. 

The relief was short-lived. Just two weeks later, Camden’s symptoms returned with a vengeance. He became lethargic, and his tiny head had begun to grow disproportionately to his body. His pediatrician’s words rang in Morgan and Brandon’s ears: “He has hydrocephalus, and we need to place a shunt.” The thought of another surgery so soon was daunting, but it was the only option. The shunt was placed to divert the excess fluid from Camden’s brain to his abdomen, where it could be absorbed by his body. This time, Camden’s recovery took longer, and the worry etched lines deeper into his parents’ faces. 

However, the very device meant to help Camden soon became a source of new worry. The shunt clogged and malfunctioned, resulting in two more shunt revision surgeries in quick succession. Camden spent much of his first year in the hospital, his days marked by the sounds of beeping monitors and the sterile smell of antiseptic. Yet through it all, he remained a fighter. Even in his weakest moments, Camden’s eyes would search for his parents, as if to assure them, “I’m still here.” 

Before his second birthday, Camden had endured four brain surgeries, a testament to his strength and resilience. But his medical journey was far from over. His second year was plagued with fevers, seizures, and infections, each one a frightening reminder of just how fragile life could be. Brandon and Morgan learned to walk the delicate line between vigilance and fear, attuned to every sound and movement their son made. Every cry or whimper was analyzed, and any abnormal behavior prompted a call to his doctors. Over time, they became experts in his care, advocating fiercely for their son’s needs. 

Amidst the hospital stays and emergency room (ER) visits, Camden’s family made every effort to give him a sense of normalcy. His older brother, Eli, and sister, Avery, became his biggest cheerleaders. Camden’s face would light up the moment he saw them, his smile and giggles soothing his parents’ worried hearts. Even in his weakest moments, his love for his family radiated brightly, a constant beacon of hope through the hardest days. 

As Camden approached his third birthday, the past few months have brought welcome relief and hope. His fevers subsided, and his seizures have become less frequent. He’s talking more now, his vocabulary expanding each day. Those first wobbly steps have turned into confident sprints. One moment, he was cautiously navigating the living room; the next, he was chasing after Eli and Avery, his laughter echoing through the house. Camden’s transformation was nothing short of miraculous, and his parents watched in awe as their little boy came into his own. 

Camden’s favorite moments are those spent with his family. He loves playing with Eli and Avery, his eyes sparkling with mischief as they build forts and play with their pet chickens. But most of all, he loves his mommy and daddy. He often snuggles into their arms, his tiny fingers clutching their clothes as if he never wants to let go. Brandon and Morgan cherished these moments, holding onto the joy and closeness that remind them how far their little boy has come. 

Camden’s journey is a testament to resilience, to the power of love, and the strength of the human spirit. There will be more surgeries, more hospital visits, and moments of fear, but there will also be laughter, joy, and triumphs. His story is one of perseverance through both good days and bad. For now, his family chooses to celebrate the good days, to hold tightly to moments of happiness, and to stand steadfast beside Camden through every challenge that lies ahead. 

As another year approaches, Brandon and Morgan find themselves reflecting on the past three years. They have weathered storms they never imagined, faced fears that would have broken many, and emerged stronger because of them. Each day, they thank God for their son, for his strength, his courage, and his love. As they prepare to celebrate Camden’s third birthday, they know that the journey is far from over. But for now, they’re deeply grateful for the good days, the laughter, and the little boy who has taught them the true meaning of resilience. 

Tell us about your journey with hydrocephalus!

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Ethan was born in March 2005, three weeks early. His body was premature, but his head measured full term—something doctors had anticipated. His hydrocephalus was diagnosed prenatally during his mother’s first ultrasound, when excess fluid was found in his brain. That moment changed everything.

After further testing, we were referred to a specialist who took over our birth plan. Hearing the word hydrocephalus for the first time was earth-shattering. Ethan is our third child, and there were no medical concerns with his sister or our other son. We didn’t truly understand what this diagnosis meant. We were given a pamphlet and sent home. 

Like many parents, we turned to the internet. That only made things scarier. We learned more about the brain than we ever expected, and with every search came more uncertainty. 

At just one week old, Ethan received a ventriculoperitoneal (VP) shunt to treat his hydrocephalus.  He did well for quite a while with that shunt.  

In August 2019, everything changed. Ethan became lethargic, and, concerned, we brought him to St. Louis Children’s Hospital to be evaluated. At 12:00 pm, we were told his shunt had failed. That shunt lasted 14 years—something we now recognize as remarkable. By 5:00 pm, he was scheduled for emergency brain surgery. The shock was overwhelming. True to who Ethan is, he woke up from surgery, cracking jokes. His recovery was quick, and he returned to being himself faster than we expected. 

Growing up, Ethan experienced both physical and cognitive delays, but his joy was constant. He smiled easily, laughed often, and connected deeply with others. He began therapies around six months old and has participated in them throughout his life. 

Milestones came on Ethan’s timeline. Crawling, standing, and walking took longer. Early on, he used a walker and later transitioned to leg braces through elementary and middle school. His childhood included frequent medical appointments—neurology, neurosurgery, pediatrics, ophthalmology, orthopedics—along with ongoing physical therapy. 

From the beginning, we knew his life and school would be a marathon, not a sprint. Ethan was enrolled in the Special School District (SSD) throughout his education, and they were incredible partners from early childhood through graduation. There were countless Individualized Education Program (IEP) meetings, goals set, progress tracked, and milestones achieved. Ethan met each challenge with determination, humor, and an outgoing personality.

One of the greatest joys was watching Ethan grow alongside his friends in SSD—learning, growing, and reaching milestones together. 

Today, Ethan is 20 years old, and we’re entering a new chapter. He’s learning job and adult life skills while continuing to grow in independence. He loves creating on his computer and sharing his work on his personal YouTube channel. Ethan understands that he is different and that communicating his thoughts can be harder—but that has never stopped him from enjoying life or sharing love with his family. 

He’s our joker—the one who keeps us laughing and reminds us what matters most. 

Ethan’s journey with hydrocephalus has taught us patience. It has been hard watching our child face challenges others don’t—but the victories matter. Watching Ethan lift his head for the first time, stand, then walk, and then no longer need a walker or braces. Seeing him read, play games with his siblings, or confidently order for himself at a restaurant. These moments are everything. 

This journey hasn’t been easy, but taking things one step at a time, facing challenges together as a family, and celebrating every milestone made all the difference. As Ethan tells us, “I am not weird, I am just different. “I want to leave you with my message to new parents, and a message from Ethan to others living with this condition:  

A Message to New Parents 

Hydrocephalus is scary. But it doesn’t define your child’s potential. Take it one step at a time. Lean on family, friends, and this community. Progress will come. 

Ethan’s message to others living with hydrocephalus is simple: 

Grow into who you are. Learn at your own pace. Don’t be discouraged. It will come in time. 

Tell us about your journey with hydrocephalus!

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My daughter’s name is Allison. As a baby, we started to notice delays in milestones, and she would scream daily. After numerous appointments, she was diagnosed with hydrocephalus at 11 months old.  

A few days after her diagnosis, she had her first surgery to place a shunt in her brain to help drain the excess fluid. After surgery, she continued to make little progress and was not able to meet milestones as a baby.  

It was later determined that she had been experiencing intermittent blockages of her shunt and that the valve was not working properly. She required her second brain surgery at age one. Her first shunt only worked for nine months. 

At the age of two, she could not walk independently and required intensive therapy to learn to walk. Her therapist worked very hard with her to help her improve. 

Around the time Allison turned three, we noticed another decline in her progress and overall health. She would scream daily and tell us that her head hurt. 

The MRI results showed that her shunt was overdraining, and that one of her ventricles was so small it had almost collapsed. She had her third brain surgery to revise her shunt at this time. 

As parents, we became very discouraged that frequent shunt malfunctions seemed to be such a common problem. Allison had three brain surgeries by the age of three. 

Shortly after her third brain surgery, she was also diagnosed with atonic seizures. This became a new worry associated with her hydrocephalus diagnosis. 

Allison is currently six years old and thriving. We feel so fortunate that she’s had three years of being brain-surgery-free. She still struggles daily with headaches, and it is a constant worry that it could be a sign of her shunt no longer working. 

I went to Washington, D.C., this year with the Hydrocephalus Association (HA) to advocate for better funding and research for those living with the condition. I strongly believe that hydrocephalus needs to be better researched and understood by medical professionals. It took months to get Allison help, and even today, at times it is difficult. Allison is so strong, and her biggest supporter is her twin sister named Maci. 

Tell us about your journey with hydrocephalus!

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My son Colton was born at 26 weeks’ gestation due to a placental abruption. At around three months old, he was diagnosed with hydrocephalus and a cyst due to grades three and four brain bleeds. His first year of life was an emotional roller coaster filled with challenges and uncertainty. Colton spent nearly six months in the neonatal intensive care unit (NICU) and later the pediatric intensive care unit (PICU). Before his first birthday, he had already undergone a total of five brain surgeries.

After spending 109 days in the NICU, we were home for less than 24 hours before having to rush Colton back to the hospital and PICU. This was one of the scariest days of our lives. He was taken for emergency brain surgery once again, which led to another long and difficult hospital stay.  

Along with his hydrocephalus and prematurity, Colton had developed meningitis, which led to a shunt infection and another shunt revision. Remarkably, he fought meningitis not once, but twice!

Colton is now four years old and thriving, to say the least! With his programmable valve and ventriculoperitoneal (VP) shunt placed about three years ago, along with undergoing an endoscopic third ventriculostomy (ETV) procedure, the difference has been night and day. We are incredibly grateful for how far medicine has progressed and for the doctors who have saved his life multiple times.  

He has beaten all the odds. Doctors gave him a 14% chance of survival and a very uncertain future. Despite that, he now participates in three therapy sessions each week, and he is progressing and doing amazing in! Thanks to his incredible therapists, nurses, doctors, early intervention, and a great deal of learning on our part as new parents, along with his own determination, Colton has come so much farther than anyone imagined and would not be where he is today! 

We are so proud of everything Colton has accomplished in his short life so far, and we can’t wait to see all that he’ll do in the future. Today, he’s walking, running, talking, playing, loving his chickens, laughing —truly the happiest little boy. We couldn’t have asked for a stronger hydro warrior, one who refuses to let anything stand in his way! 

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!

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Our son, Hunter, was 18 months old when he started to vomit randomly, up to 8 times a day. We visited countless doctors, urgent cares, and specialists for answers, but no one had a clue why our son was vomiting so much and so often. 10 months into the vomiting episodes, we were finally able to see a gastrointestinal (GI) doctor, but he cleared Hunter of any GI issues. 

A couple of days went by, and Hunter’s pediatrician called us to go over his symptoms and case. After further discussion, she referred Hunter for an urgent MRI of his brain, which showed enlarged ventricles, along with other abnormalities. A month after the MRI, we saw a neurologist at a children’s hospital who told us that our son was ‘completely fine with no signs of hydrocephalus’. We left the appointment determined to find a doctor who would listen to our concerns and help our son!  

As parents, we knew something was not okay with our son. We weren’t going to stop until we were heard, and our son is treated properly! A week after his neurologist appointment, we saw a neurosurgeon at a different children’s hospital. At the first appointment with the neurosurgeon, I broke down and cried. She answered everything I had questions about without me even asking anything! She ordered different tests, labs, and scans, which Hunter had within a few weeks of that appointment.  

Everything came back pretty normal, so she was thrown off a bit. She was not sure if his symptoms were based on his Chiari I Malformation or if he had hydrocephalus. She decided the best course of action was to do a trial of Diamox to see if that slowed down the symptoms and hopefully gave her clearer answers. The Diamox helped Hunter’s symptoms for a month, but then it stopped. 

At this point, she ordered another urgent MRI of his brain, which showed no difference in his ventricles. She decided the next step would be intracranial pressure (ICP) monitoring to check the pressure inside Hunter’s skull. So, five days later, our 2-year-old boy had an ICP bolt placed in his brain and had a 2-day intensive care unit (ICU) stay. At the end of the second day, his neurosurgeon said his numbers were not concerning and mostly normal. We were discharged home at noon that day.  

We drove 1.5 hours back home, but we noticed that Hunter had a lot of swelling in his forehead. I sent his neurosurgeon pictures via MyChart, and she called to inform us that we need to bring Hunter back and go to the ER there ASAP. We drove all the way back to the hospital, where he underwent another brain MRI. This MRI showed a collection of cerebrospinal fluid (CSF) under his scalp. She told us she was now convinced that Hunter does have hydrocephalus and that she is intrigued by his case, as she has only seen this rare complication two times in her career. She placed a programmable shunt in Hunter.   

The first couple of days with his shunt were rough, but it’s been a little over a year now, and we couldn’t be happier and more thankful for all that the shunt has done for our baby boy! Hunter hasn’t vomited since he received his shunt, his eyes do not cross as severely, his speech has improved tremendously, he no longer has absent seizures, and he no longer sleeps all day long. He is able to be a pain-free child, and our hearts couldn’t be happier!

Parents, ALWAYS follow your gut! If we had never followed our gut instincts with our son’s symptoms and scans, he may not be here with us today! We know ourselves and our children better than anyone else! 

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!

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The news shattered my world. Before that moment, I had only seen unfamiliar images of children with large heads on the internet. I never imagined it could be my baby one day. 

When the sonographer told me that my baby’s brain was filled with fluid, I froze. The African blood in me rose with skepticism. “How could a machine know something so serious about a child still in the womb?”

I was confused, overwhelmed, and scared. But that was the beginning of a journey I never saw coming. 

Maryam introduced me to hydrocephalus, and through her, I discovered strengths I didn’t know I had—strengths in parenting, in advocacy, in love.  She brought out a version of me that fought fiercely, learned quickly, and loved deeply. 

Maryam was born at 38 weeks with a head circumference of 56 cm. Because she was in breech position, her delivery caused birth trauma—her left thigh was broken during birth.

I’ll never forget seeing her for the first time in the Special Care Baby Unit (SCBU). She was tiny, fragile, and wrapped in so many medical worries.
I was thrown into an emotional storm, wondering how I was supposed to care for a baby with a broken leg and a condition I barely understood. 

Hydrocephalus may not be rare in Africa, but awareness is. Google and YouTube became my second doctors. I researched endlessly, often with tears in my eyes. But the more I learned, the more afraid I became—until I stumbled across a video from Dr. Benjamin. His words were like a light in the dark. For the first time, I felt hope. 

At one month old, Maryam had her first brain surgery—an endoscopic third ventriculostomy (ETV). Before then, we had been draining fluid regularly at the neurology clinic.

After the procedure, her head became soft and sunken, her skull split into two distinct ridges. It was frightening to touch her head. But her doctors reassured me that it would fuse again in time. 

Sadly, the ETV failed not long after. We were given two options—try the ETV again or go for a shunt. I was terrified of the shunt. I had read about the complications, and I knew how few pediatric neurosurgeons there were in Nigeria. Every decision felt like walking a tightrope blindfolded.

The surgery didn’t come quickly. I kept pushing and pleading for Maryam to get the care she needed. Time wasn’t on our side. Children with neurological conditions need urgent intervention, but we were stuck in a system where “urgent” often meant “wait.” 

Finally, in April 2024, she had her shunt surgery at just four months old. She was so full of life—kicking, smiling, responding. From the first moment I saw her, I knew my baby was a fighter. But our joy was short-lived. A few weeks after the surgery, her shunt got infected. I was told there was pus filling the chamber of her valve.  It had to be removed. 

We were admitted again for weeks. As if that wasn’t enough, the hospital staff went on strike during our stay. I watched my daughter regress before my eyes.  She stopped moving the way she used to, and worst of all, she lost her vision. After eight agonizing weeks, we went home—without a new shunt. 

Sadly, Maryam passed away at 11 months old. My beautiful, brave baby girl. Her life was full of fight, but it was cut short—not by her condition, but by a healthcare system that failed her. This is not just our story. It’s the story of many children in Nigeria and across Sub-Saharan Africa. 

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!

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Walking into our 20-week ultrasound, we were like any other expecting parents, apart from the fact we were having twins. Walking out of the 20-week scan, we didn’t really know what was happening.

The scan started normally. The midwife explained everything and told us all the parts while they looked at one of the twins. Then she moved onto the second child, and all of a sudden, she went quiet. This is when we started to worry. 

As she went to get a second opinion, nothing was really said to us, but we were told we would need to get another scan at an academic hospital. The wait between the scans was awful. What was only a few days felt like forever. On the day of the scan, we met with the professor who did the scan, and this is where we learned the term hydrocephalus – What was this? What does it mean? What chance does our child have? These were only a couple of the hundreds of questions going around in our heads. 

Leaving the appointment with the professor, I walked out and just cried. I still had so many questions. What did this diagnosis mean for our little girl

Throughout the rest of my pregnancy, we had weekly scans monitoring the progression, each time being asked what we would do if baby 1 died. At 33 weeks, we had the final scan and were given the date for a c-section 1 week later. 

On the day the twins were born, the doctors were shocked Hannah survived birth. She and her twin were taken to the neonatal intensive care unit (NICU). That same day, she had scans of her brain, and we were told she would need to have a shunt placed. At 4 days old, Hannah underwent brain surgery to place her shunt.

After the surgery, Hannah spent 1 night in the NICU and then was allowed to move onto the children’s ward. This was a surreal moment for us. The child we were told may not even be able to breathe on her own, had survived brain surgery, and was now leaving an incubator and moving to a cot on the children’s floor of the hospital. My girls were back together for the first time, sharing a room for the first time ever. This was an emotional day for us all as we had gotten over a large hurdle, graduating from the NICU and leaving the world of intensive care.  

As a mum, all you want to do is care for your children, and having them in the same room as me meant I was able to do things, such as change nappies, something most parents take for granted. One thing we were still unable to do was to give a bottle to the girls. We learned that babies do not develop the ability to swallow until 35 weeks, so they had an NG tube. The nurses did teach us how to feed using the tube so we could take on more of the girls’ care. This is when the real parenting journey started. 

After two weeks in the hospital, the girls were released from the hospital.  But, after just 2 weeks at home, Hannah had a complication. She was cold and pale. We took her to the hospital, where they diagnosed her with meningitis. This led to a 2-week hospital stay and subsequently 2 surgeries.  

The next year was mostly uneventful, until it wasn’t. Suddenly, Hannah started vomiting frequently and was unreactive. Every time we took her to the hospital she had come round, so we had spent 5 months being in and out of the hospital. Eventually, we pushed and asked the doctor to do a scan. It was then they found her shunt was blocked. The same day, she had her shunt replaced. Straight away we noticed a difference. 

This was 2 years ago, and our little girl is now in a normal elementary school. Although she is slightly behind in development, she is becoming a sassy little girl.  

To follow Hannah’s journey with hydrocephalus. follow me @hydromummy on Instagram where I am trying to share our story. 

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!

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Colton is a twin, born at 31 weeks and 6 days. At his 7-day routine head ultrasound, the doctors discovered a grade 2-3 intraventricular hemorrhage (IVH). He was transferred 2 hours south to Wisconsin Children’s Hospital while his twin remained at their local NICU. 

After a few days of close monitoring, they noticed increasing pressure on his ventricles, and he quickly became symptomatic. He was diagnosed with hydrocephalus, and at just 16 days old, doctors placed a ventriculoperitoneal (VP) shunt to treat it. Colton was released from the hospital at 58 days old. 

It was 8 months before his shunt had failed for the first time. At first, imaging didn’t show anything concerning, but we were kept inpatient due to a positive COVID test Colton had outside the hospital. However, when he was retested at Children’s Hospital, it came back negative. I was adamant that no one in our house or family was sick, and Colton was not sick. It had to be shunt-related. He wasn’t responding to us; he was sleeping through everything and vomiting nearly every hour. The following day, the hospital repeated imaging and was able to see that the catheter was pulling out of the ventricle. The neurosurgery team decided to place a programmable shunt, as they explained Colton’s current shunt was no longer a good fit for his quick head growth.

Colton’s new shunt lasted about two months before another failure would occur, this time due to a blood clot in the catheter. Colton had his second shunt placed, and we were home in 4 days! Everything seemed to be going well at discharge, and the team felt comfortable sending him home after his imaging looked promising. But only 5 days later, on Colton’s first birthday, he experienced yet another shunt failure.  

During transport to the hospital, Colton quickly went unresponsive in the ambulance. Emergency surgery was performed at 1 am to relieve the pressure on his brain. In that surgery, his doctor decided to place an external ventricular drain (EVD) to monitor for clear cerebrospinal fluid (CSF) before going back in and placing a new catheter. The hope was to avoid any other blood clotting-related shunt failures. Colton was inpatient for 5 days while monitoring the fluid before they placed his most recent VP shunt.

Now, at almost three years old, Colton is thriving. By his third birthday, he will have gone two years without a shunt failure and is doing exceptionally well in therapy. He is running, jumping, smiling, giggling, and loving life with his twin, Cason. Both boys have been diagnosed with autism and are nonverbal. Since Colton is unable to communicate when he’s not feeling well, we continue to monitor him closely for any signs of shunt complications. We’re thankful all has been well this past year!

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!

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Hydrocephalus became a new word in my vocabulary in May of 2011. At this point, I had never met anyone living with the condition, let alone what it meant or how to spell it. My daughter Savannah introduced me to hydrocephalus 13 years ago and she has taught me all my parenting and advocacy skills, ones you would never find in a textbook.

Hydrocephalus was Savannah’s first diagnosis. I can still feel the trauma of seeing my baby girl curled up in a ball as a needle was inserted into her lower spine for a lumbar puncture to measure her cerebral spinal fluid (CSF). She was teeny tiny, her skin mottled, and I felt incredibly helpless as her mother. I wanted to comfort her but all I could offer was my touch as she laid on the small table while continuously dipping her pacifier into sugar water. Honestly, I should have known the first time she faced this procedure and handled it like a champ, that she would be the most courageous girl I would ever know.

During the first six weeks of Savannah’s life, she remained in the Neonatal Intensive Care Unit (NICU) as her fragile body endured test after test. Just one day shy of her being one month old, we handed our beautiful newborn over to a neurosurgeon so that he could place a ventriculoperitoneal (VP) shunt, one of the most terrifying days of my life. It was a tough few days, as I watched my delicate daughter fight through something unimaginable. As she continued to heal, we knew our journey would be different from what we had envisioned, but our love for her was fierce.

On July 2, 2011, at six weeks old, Savannah was finally strong enough to begin her life at home, and we were overjoyed. With numerous follow-up appointments and Early Intervention, Savannah thrived in the comfort of her home.

Savannah was my first and only child and I had no idea what to expect when raising a child with hydrocephalus. I was warned about the potential for permanent disabilities such as overall developmental delays, learning disabilities, and the potential for seizures, however, I was never informed that she might face a visual disability. She had a downward gaze, and her eyes were often in a sunsetting position. I initially thought her disinterest in toys, lack of eye contact, and her love for lights were simply due to her hydrocephalus or just typical aspects of early development stages.

At six months old, our early intervention specialist made it very clear that she had concerns about Savannah’s vision when she so rudely stated, “It’s like the lights are on and nobody’s home,” before covering her own mouth as in disbelief of her blunt words. We followed up with ophthalmology and at eight months of age, Savannah was diagnosed with Cerebral/Cortical Visual Impairment (CVI). I was absolutely devastated. How would I teach my child who was now considered legally blind?

Over the years, I have learned that Savannah is not only my daughter, she’s my greatest teacher. Her resilience and unique way of navigating the world have completely reshaped my understanding of motherhood. Through her, I’ve gained knowledge about many rare conditions and other medical conditions including cerebral palsy, epilepsy, eosinophilic esophagitis (EOE), prolonged QT syndrome, and especially cerebral/cortical visual impairment (CVI).

Savannah’s journey inspired me to become a Teacher of Students with Visual Impairments (TVI), allowing me to turn our challenges into a greater purpose. Today, I use my expertise to guide other parents and caregivers navigating the world of CVI.

Savannah has shown me the value of compensatory skills, how relying on auditory and tactile skills can create pathways to understanding. With routine, context, and predictability, she thrives, reminding me daily  that true strength is found in resilience and determination. Through her, I’ve learned not only how to be a parent, but how to advocate, evolve, and grow.

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: info@hydroassoc.org with the subject line “Share Your Story”.

Over the years, Ryder has shown more strength than I could ever imagine. He has faced eight surgeries, including four brain surgeries, and it has not been an easy journey. There have been times when his shunt malfunctioned, and I had to rely on my instincts as a mother to tell the doctors something wasn’t right. Those moments are terrifying as you never want to be right in those situations. However, when I noticed that Ryder was not himself after one surgery, I knew something was wrong. Sure enough, an MRI confirmed it, and they had to operate again the very next day.

As Ryder has grown older, we’ve faced new challenges, particularly with school. Around fourth grade, we began to notice how hydrocephalus impacted his learning. He struggles with memory, problem-solving, and certain academic tasks. To support him, his neurologist even wrote a letter to help his teachers understand why subjects like math and memory can be tough for him. It can be frustrating, but we’ve learned to advocate for Ryder and explain his challenges to others. He’s such a smart kid, and watching him work through these hurdles makes me proud every day.

Ryder has missed school, playdates, and countless moments of carefree childhood due to surgeries and hospital visits. It is incredibly difficult to watch him endure these experiences. All you want is to take the pain away and make things easier for him. But Ryder is resilient. Even though he has developed PTSD related to the word “surgery,” he continues to fight.

Emotionally, Ryder is incredibly strong, but there are rare moments when he’ll cry without any clear reason. He hasn’t faced many social challenges related to his hydrocephalus yet, though I do worry about how other kids might react to the scar on his head or his gag reflex, which is caused by his chiari malformation. For now, Ryder remains the sweetest, most polite child I know. He always puts others before himself and approaches life with a loving attitude.

Despite everything, there are moments of triumph. His grades are improving, and I’ve learned how to support him more effectively with schoolwork. I’m constantly working on my patience, especially when he’s processing new information. I know that as he gets older, he will gain a better understanding of his body and learn to communicate his needs more clearly.

Ryder’s journey has changed me as well. I’ve become a stronger person and parent because of him. I advocate for him, ask questions, and trust my intuition. My advice to other parents facing similar challenges is to never underestimate your intuition. If something doesn’t feel right, don’t hesitate to consult your doctor. Build relationships with your healthcare team and lean on support groups. There are other parents who understand what you’re going through, and their advice and experiences can be so helpful.

Through it all, our faith has been our anchor. I believe that God gave us Ryder because we were meant to embrace this journey together. Our lives are richer because of him, and I wouldn’t change a thing. Ryder’s struggles are our struggles, and we face them as a team. Ryder, we love you so much! Never give up—you’ve already shown us how incredibly strong you are!

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: info@hydroassoc.org with the subject line “Share Your Story”.