As told by his parents, Alexandra and Dorian Rhodes
After a completely healthy pregnancy and uneventful delivery at 37-weeks, our precious son Miles was born on October 14, 2011! We were beyond blessed to have this beautiful baby boy enter into our lives. The first three months of Miles’ life presented the normal newborn and infant challenges. But, around that three-month mark, we began to notice Miles’ cry was a little bit higher pitched and his head began to grow at what seemed to be a faster rate than normal. As any typical new parents would do, we began our own research to try to understand what might possibly be going on, and if we had anything to truly be concerned about. The word “hydrocephalus” kept popping up. Certainly, this couldn’t be what our perfect, beautiful, brand new baby boy had. How could that be possible?
When our pediatrician reinforced our suspicions, we were instantly referred to Penn State Hershey Children’s Hospital to visit pediatric neurosurgeon, Dr. Mark Iantosca. A series of tests and exams confirmed our fears: Miles was diagnosed with hydrocephalus. In that moment, our lives changed forever and it seemed like there could be nothing worse. In retrospect, we are blessed and fortunate to be where we are as a family and where Miles is as a little boy. We have a lot that we are very grateful for, despite what soon followed that initial diagnosis.
Unfortunately, Miles’ condition was not only severe, but also very complex. Hydrocephalus is a condition in which cerebral spinal fluid (CSF) builds on the brain. What made Miles’ diagnosis so severe and complex were the multiple “elocutions,” or cysts, in the brain filled with CSF and blocking the fluid from draining on its own. As a result, Miles had surgeries, battled infections and underwent even more procedures to drain the fluid. The solution: ultimately, a shunt was placed into his brain to drain the CSF into his abdomen. Now, more than 20 surgeries and four shunts later, we’re approaching our one-year “shuntiversary,” a holiday often celebrated by hydrocephalus warriors when they’ve been shunt revision-free for a year or any significant period of time that’s successful and worthy of celebrating!
Miles continues to experience physical and mental delays from his conditions, multiple long-term hospital stays, and frequent bouts of immobility. Yet, he starts and ends each day with a smile and laughs the whole way through. Obviously, in every other way, Miles is a fun-loving, typical 3 year-old with his own likes, dislikes and talents just like anyone else! Miles is loving and kind. He enjoys music, and especially shares our love of the Dave Matthews Band. His strong arm hints at a future pitching career, and he adores his dog, Bing. Every day, Miles fights to do exactly what he knows he’s capable of As a result, through him we have learned so much about our own strengths as individuals and ultimately as this remarkable little boy’s parents. It’s not only made our relationship stronger, but we’ve been able to teach Miles valuable lessons in patience, love and compassion. His beautiful qualities wrap themselves around each and every person he meets.
We’re filled with joy and gratitude for our son, our family and the amazing extended family that has embraced us at a phenomenal children’s hospital right in our back yard – Penn State Hershey Children’s Hospital. We’re thankful for Dr. Iantosca, the nurses and various care team members who keep us comfortable and safe, and lend a warm and loving ear when the day just seems to get us down. In addition to all the medical services provided for Miles at Penn State Hershey, the care and support extends beyond the patient to the families, as well. For example, the Child Life team is with us every step of the way to provide whatever they can for our health and well-being, too. The value of this service for our family (and all families at Penn State Hershey Children’s Hospital) is truly immeasurable. Most of all, we’re thankful that, in all these people, with all the different experiences and skill sets they possess, they love and care for our son as if he’s their own. These remarkable individuals choose to work and care for patients and warriors like Miles at Penn State Hershey.
Miles is our biggest inspiration and our grounding force. In addition, though, the Penn State Hershey providers and staff also inspire us – they never stop encouraging us to stay strong and continually remind us that we’re our child’s best advocate. For that, we, and the community, are truly blessed.