The question of prognosis invariably is one of the first things a newly diagnosed family considers. It is difficult to hear there is a complication with a fetal brain. The unknowns are intense and agonizing. Getting caught up in the what-ifs can be all-consuming.
Somewhere around the 27th week of gestation, we were unable to accurately measure the ventricles in Parker’s brain. Ultrasound after ultrasound, we watched the ventricles increase exponentially. With each Perinatology visit, we would sit white knuckled in the waiting area praying for a ventricle stabilization or a decrease. With each visit, we watched Parker’s fluid increase, and her brain compressed until it was a fine sliver.
It was at that time that I felt peace. I know it sounds completely absurd. But, it is a fact. I realized there was very little I could control. I was unable to stop the increasing head circumference. I was unable to stop the fluid. But, I could control how I reacted to the terrible situation. I could relish in the fact I was pregnant. Many families struggle with infertility. However, the miracle of a child was growing inside me. That fact should translate into joy and celebration. The worry and fear lifted.
This brings me back to prognosis. Hindsight is a wonderful thing. While I had abandoned the anguish, I wanted to prepare. The ultimate outcome of a person diagnosed with congenital hydrocephalus varies wildly. I have likened our children to snowflakes. Each are very beautiful. And, every “snowflake” is unique and precious. I have yet to find two children who have matching conditions with a matching outcome. Hydrocephalus comes with its own complicated web of intricacies. There is no way to predict what may become a challenge with one child and not with another.
Appreciating our snowflakes for their exceptional gifts is of the utmost importance. My goal is to strive to never let a moment pass that I’m not thankful for the wonderful child I have been given. She is truly my blessing.