Coping With Hydrocephalus

My son was a 25 week preemie. Due to his prematurity he suffered a grade IV on the left and grade III on the right immediately after birth. Doctors told us there was a great chance he wouldn’t survive so they didn’t put in a shunt. They told us to ride it out. They told us he would most likely have cerebral palsy and be completely dependent. He was in the NICU for 4 months with weekly MRI’s. It was a rough time. He had stage 2 ROP that was successfully treated with the laser surgery. He had a inguinal hernia that needed repair. On top of it, he has a scar on his head from being cut by the scalpel as they rushed him out during the emergency c-section caused by a spontaneous placental abruption.

Now he is almost a year to his original due date. Still with no shunt! His right side completely resolved, but his left side is damaged to a severe extent. The majority of brain tissue is clearly destroyed on the MRI He only suffers from very minor right-sided weakness in his arms, trunk and leg. He still crawls around like a champ. He undergoes physical therapy bi-weekly. He hold his own bottle. He babbles up a storm. He’s the happiest baby I’ve ever seen. His smile and bright baby blue eyes would light up the darkest face. He doesn’t suffer from seizures, tremors twitches, headaches or anything else.

He is truly a miracle. Since he is meeting all of his milestones and showing no signs of increased pressure his neurosurgeon is keen on letting nature take its course. He is baffled as are many others. This is virtually a normal, healthy baby with grade IV hydrocephalus leading a developmentally on-track life up to this point.

The scary part is not knowing what lies in his future. We just keep the faith that our son will continue to thrive as we provide every opportunity we can for him to do so. He is an amazing, inspiring story.