“Your baby is blind and forevermore will be.”
That statement – burned into our brains forever.
Blind. My mom started crying. As a mature and wise adult, she had a much clearer grasp of the enormity of that statement. As a young 18-year-old adult, it didn’t strike me the same. Honestly, I didn’t even understand her response and thought it was odd that she started crying so suddenly.
My inner response was more of, “Okay, now what. Where do we go from here.” Oddly enough, as a child I was fascinated with Helen Keller and Mary Ingalls from Little House on the Prairie. Weird, huh?
Calm and Peace
Then again, maybe my response wasn’t because of my age. That calm and peace in the face of adversity has become my hallmark for the long-term. That trait has gotten me through many struggles, including as my youngest daughter’s life hung in the balance in 2011, during a sudden and mysterious illness. That calmness was tremendously beneficial in my nursing career, bringing with it a reputation of always being calm, even in the midst of serious medical crises and stressful situations at the hospital.
Why was she blind?
As the doctor finished telling us the dreadful news about Jessica’s vision, she led us into the hallway to look at the CT films we brought with us to the appointment. One look at the film and it was obvious why the doctor said blind forevermore. It was completely clear, even to the untrained eye, that part of Jessica’s brain was just not there. Most of the area of her Occipital Lobe on the left and a large part of it on the right was not there. Instead it was a space filled with cerebrospinal fluid. Part of that fluid filled space went deeper into the brain, potentially affecting things other than vision. The diagnosis was hydrocephalus, the buildup of too much cerebrospinal fluid in the brain.
But, wait, doesn’t hydrocephalus mean that she would have had a large head? No, for two reasons. First of all, she did not have any ‘soft spots’ at birth. We had never thought a lot of it, but without those soft spots, a build up of pressure from fluid would not cause her head to get large very easily. The second reason was that there was not an extremely high level of pressure. The medical term used on her report was hydrocephalus exvacuo which describes what happens when there is damage to the brain caused by stroke or injury, possibly leading to shrinkage of brain tissue. Consequently, there is more fluid than normal, and the increased pressure of this extra fluid can cause compression and more damage to the brain.
Next in the line of business was another eye exam. Back in the dark ages of 1988, Chattanooga did not have a Pediatric Ophthalmologist. As luck would have it, the next day there was a Pediatric Ophthalmologist running a clinic at Children’s Hospital and we were able to go see him. He dilated Jessica’s eyes for examination. The news was that she had some response to some severe intense light which meant she had some light perception. The other news was that he saw optic nerve atrophy, which meant the extra pressure from the fluid need to be relieved to preserve any possibility of light perception for the future.
My baby needed surgery. Not just surgery, but surgery on her brain. They would have to drill a hole in her skull. The thought was unimaginable. A referral was made to a neurosurgeon for a ventriculoperitoneal (VP) shunt placement. But there was a problem…
The Neurosurgeon didn’t want to do the surgery because he didn’t feel it was necessary. He didn’t think it would help anything. Naturally, we wanted to do anything we could do to make things better or at least preserve what we had.
We needed an advocate!
Next… The Fierce Advocate
If you are new to The Transitional Truth, Jess is an autistic and visually impaired young adult. I am telling our story to help other parents and professionals learn from our journey. My hope is to help others better prepare for experiences within the educational system and the transition to adulthood.