In July of 2007, Pete and his twin sister, Zoe, were born at 30 weeks - 10 weeks premature.
Pete was diagnosed with a condition called craniosynostosis (in layman’s terms means his skull was already fused together, no "soft spot").
At just 3 months old, he underwent an hours long procedure to create a soft spot, which meant his neurosurgical team at the University of Minnesota had to crack his little skull apart to create the room required for this brain to have adequate room to grow.
While recovering from this terribly invasive surgery, we noticed that the swelling in his head hadn’t completely resolved. In fact, when asked by Pete’s neurosurgeon Dr. Haines how we thought his head looked, my reply was ‘swollen’.
That was the day I heard the word hydrocephalus for the first time.
Hydrocephalus, or water on the brain, meant Pete’s cerebral spinal fluid wasn’t property draining from the ventricles deep within the middle of his brain. The pressure from this build up of CS fluid was causing him to look swollen. Pete was scheduled to have a shunt surgically placed in his brain to drain the CS fluid for him.
Pete endured 4 more brain surgeries that year - all before he was a year old—all due to shunt failure. I became frustrated at the routine of taking him to the emergency room with symptoms of shunt failure (vomiting, lathargic, headache), cat scan to check the ventricles in his brain, confirmation of shunt failure, brain surgery to replace bad shunt with… another shunt. That’s it. That was all that was available to our son. Just brain surgery to keep replacing failed shunts.
This is unacceptable. No one should have to live with the daily fear of brain surgery. Especially a child!
Funds are needed to find a cure. Awareness is needed so everyone knows what Hydrocephalus is and wants to do something about it. Our mission at For the Love of Pete is to fight Hydrocephalus one Putt with Pete Charity Golf Event at a time.
For the Love of Pete 2019 LEADERSHIP
For the Love of Pete
Putt with Pete
Sara & Greg Fleming
Katie & Jason Lay
Jeremy & Anita Drentlaw
Jesse & Jillian Tuvnes