My wife Bobbi and I were awaiting the arrival of our first and only son in the summer of 2016. We live in La Crosse, WI, and have three daughters. We were all very excited to meet our son. A few weeks before his due date my wife was scheduled for an ultrasound at 36 weeks to check fluid levels. During this ultrasound it was discovered that something was wrong. One of our son’s brain ventricles was enlarged. Unsure of exactly what was going on, we were sent for more ultrasounds at Mayo Clinic in Rochester, MN.
With a neurologist on-site, it was determined we could have the baby at our home Mayo Hospital in La Crosse. Felix was born on June 29, and he was perfect. A beautiful baby boy, with a nice loud cry. It was a very joyous birth, but soon turned back to worry as he underwent multiple MRIs the next day. It was discovered that cysts in his ventricle system were the issue. He had hydrocephalus.
After meeting with pediatric neurosurgeons at Mayo in Rochester, Felix was scheduled for his first brain surgery when he was one month old. The ventricles were opened and communicated using an endoscope. The surgery worked temporarily, but the cysts closed back up. A similar procedure was performed at two months.
We soon noticed that he had trouble seeing and tracking, only looked to his right side and his head size was increasing. At three months old he had his third surgery to place a shunt and he got much better.
Right before Christmas he began to vomit and become lethargic. After ruling out a stomach bug, it was back to Rochester to revise his shunt and recommunicate the ventricles. He briefly lost the ability to move the limbs on his left side, but recovered. One of the hardest moments of my life was leaving my wife and son in the pediatric ICU on Christmas Eve so I could get home and make sure Santa found his way to our house for our girls. He was released on the afternoon of Christmas Day, but soon had to return for several more days.
He was back for two more surgeries in January, and two more in February to treat a shunt infection.
We had some calm after that, but symptoms returned in early April. We had a houseful of company over for a party when he had to return to the hospital. He had a second shunt placed. He heals very well– but so well, that he once even healed scar tissue right over his shunt
He has a complicated form of loculated hydrocephalus, and every time a problem was solved he seemed to sprout a new one. He later developed a brand new cyst near his brain stem, and developed another infection. He was in the hospital for his first Christmas, his first birthday and several other planned family events.
Through it all, he has been a happy, sweet boy. He has become a favorite of the nurses at the hospital. As of mid-July he has had 15 brain surgeries in just over 12 months. The pediatric neurosurgery team at Mayo has been so wonderful to Felix and our family. He is a complicated case, but the surgeons are confident that he will get to where he needs to be.
Family and friends recently held a benefit for Felix, which was a huge success and bigger and more well-attended than we ever could have imagined.
People often ask us how we do it- how do we cope with all the surgeries? For us it is really very simple…you just do what you have to do. Anyone can get through it if you are faced with no alternative. It’s been tough, but Felix and our family are getting through it. And some day I hope I can be as tough of a guy as Felix. He is one strong, awesome dude.
Tell us about your journey with hydrocephalus!
Hydrocephalus affects each of us differently. Share your story with us! We will feature the amazing individuals in our community on our website and through social media.
Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!
If you would like to share your story, please email it to: firstname.lastname@example.org with the subject line “Share Your Story”.
Become a Grassroots Advocate for Hydrocephalus today! Click here to join the Hydrocephalus Action Network.