By Jessica Wagner
Mommy to Cole
Hydrocephalus, Cerebral Palsy, & Cortical Visual Impairment
Born December 2021
Our journey to Cole began with years of trying to grow our family. After multiple unsuccessful attempts with IUI and IVF, we moved forward with embryo transfers. Our third transfer finally resulted in a pregnancy.
Early on, we faced another scare when I tested Kell-negative. If Cole had been Kell-positive, my body could have developed antibodies that attack the baby’s red blood cells. Thankfully, we later found out he was not Kell-positive, but those weeks of uncertainty were terrifying.
Like most families, we dreamed of a healthy, happy child. We imagined sharing our lives and hobbies with him, watching him grow, develop friendships, and build a life of his own. We envisioned a typical delivery and maternity leave—just the normal milestones of becoming parents.
Everything changed when Cole was born at just 25 weeks.
Earlier that day, I had started experiencing symptoms that I now know were contractions. I reached out to my OB’s office, but they never responded. After work, my husband took me to labor and delivery, thinking we might be overreacting and would be heading out for Chinese food afterward. Instead, we found out I was already 4 centimeters dilated and would not be leaving the hospital.
Around 9 p.m., Cole began trying to deliver in a breech position, which led to an emergency, sedated C-section. I was rushed into the operating room in tears while my husband waited, calling family members and trying to understand what was happening. I remember waking up and being taken to the NICU, where I saw Cole in the isolette—so tiny—and then being moved to recovery.
Cole spent 129 days in the NICU at Mercy, and we lived at the Ronald McDonald House during that time. The NICU experience was overwhelming—full of fear, uncertainty, and constant ups and downs. We didn’t even get to hold him for the first month. There were breathing complications, infections that nearly took his life, feeding struggles, and eventually, a bilateral grade 3 brain bleed.
That brain bleed led to his diagnosis of hydrocephalus. At just one month old, he underwent his first brain surgery to relieve pressure. Over time, he would require multiple additional brain surgeries, including placement of his first VP shunt before leaving the NICU.
The emotional toll was heavy. We were processing everything differently as parents, while also trying to manage the emotions of friends and family. Because this all happened during the COVID pandemic, we were also incredibly isolated. Family couldn’t be with us in the NICU or even at the Ronald McDonald House.
We were first introduced to On Angels’ Wings through the maternal fetal medicine clinic at Washington University in St. Louis, though due to COVID restrictions, they weren’t allowed into the NICU when Cole was born.
After leaving the NICU, Cole’s medical journey continued. He required ongoing therapies—occupational, physical, and speech—and continued to experience shunt failures, leading to additional surgeries. By the time he turned three, he had undergone 20 surgeries related to hydrocephalus, 18 of them brain surgeries.
At around age two, Cole was diagnosed with cerebral palsy. That was another devastating moment. I remember researching hydrocephalus early on and learning that 70% of infants diagnosed with it are later diagnosed with cerebral palsy. Seeing that statistic become our reality was incredibly difficult.
After his cerebral palsy diagnosis, I reached out to On Angels’ Wings for pictures because I desperately needed something positive. We were paired with Tiana for our first session when Cole was about two years old, and it was an incredible experience. She made us feel completely at ease, and our photos turned out beautifully.
Cole has also been diagnosed with cortical visual impairment, which has added another layer of complexity. We’ve had to advocate constantly—not only for services, but sometimes for providers who truly understand his needs. At times, we’ve had to change providers to ensure he was receiving appropriate care. Navigating insurance and access to services has been another ongoing challenge.
This journey has also revealed which people in our lives truly understand and support us—and which ones struggle to come to terms with Cole’s reality.
Cole has worked incredibly hard to reach his milestones. He didn’t walk independently until he was three and a half years old and still struggles with long distances and uneven surfaces. His fine motor skills are impacted, and he doesn’t yet have the same independence as many children his age. With cerebral palsy, we won’t fully understand how it will affect him until he’s older, as growth continues to change his abilities.
Still, Cole is determined.
Recently, we’ve experienced a full year without surgeries, and it has made an incredible difference. His motor and language skills have grown so much, and it has been a season of forward progress and celebration. He also started early childhood special education, which has had a very positive impact on his development. We’ve continued photo sessions with On Angels’ Wings each year, and it’s been so special to have Tiana walk alongside us, capturing Cole’s growth and milestones year after year.
We are now preparing to try IVF again in hopes of growing our family, though that journey brings many emotions and fears. We’re leaning into our faith and trusting the process.
Cole is full of joy, love, and wonder. He truly takes in the world around him and approaches life with incredible grit. Every milestone he has achieved has required hard work, and he meets each challenge with joy. Everyone who meets him is drawn to his positive, fun, and silly personality.
I want people to understand that his diagnoses do not define him. Cerebral palsy is not a cognitive deficit—it is a motor condition. He may need adaptations or extra support, but he still deserves dignity, opportunity, and visibility. It’s a spectrum, and every child’s experience is different. I also hope to see more research across all of his diagnoses, especially cortical visual impairment, which is still not widely understood.
Looking ahead, we are hopeful. We hope Cole continues to grow in independence, builds meaningful friendships, and is able to participate in any activity he chooses—with adaptations if needed. And we hope, one day, he will become a big brother.
On Angels’ Wings has brought so much light into our journey. They have prayed for our family, helped us celebrate progress instead of focusing only on hardship, and created opportunities for us to give back—like making Halloween costumes for NICU babies and writing thank-you notes to donors.
What OAW does is incredibly important. They normalize the grief and challenges that come with a diagnosis like Cole’s while helping families focus on the good in the midst of the hard. They build community and educate others on how to support families navigating disability or grief.
They are truly a light in the darkness.
