I still remember the day that they sent us down to the ultrasound department at the neonatal hospital. We were sick with worry. Emma was one month old and I knew what it would mean if this trip to the first floor did not pan out as we had hoped.
In the previous week, the routine head ultrasound had detected early changes in the white matter of Emma’s brain. We were told it could be nothing and it could completely resolve itself, or there could be a more serious underlying injury.
If it was serious, we would see what is called Periventricular Leucomalacia or PVL on today’s ultrasound. Full-blown degeneration in patches of white matter of the brain. PVL is the most common brain injury and common cause of cerebral palsy.
We pushed Emma’s crib into the ultrasound department. A middle-aged woman with long grey-streaked hair and white lab coat introduced herself as the doctor. I was too nervous to try to remember her name. We put Emma on the bed and the doctor put the gel-covered probe of the ultrasound machine on my baby’s head. A few seconds later, the picture on the black and white screen came in the focus. My world caved in. On the screen were the signs that this was indeed PVL.
I dropped my head on my arms. I could not believe it. I caused chaos in the ward. I insisted that the head of the unit tell us what this diagnosis meant for Emma’s future. Suddenly, nobody knew. They told us it is now time to wait and see. They kept sending neurologists who elicited reflexes, tapped with the hammer and checked her weight and vital sounds. I knew this exam so well, I did it myself on Emma every day. They said that even if the exam is normal, she could still have CP.
They said we have to wait for the big picture: how she grows, the exam and what the brain scan looks like.
“Wait and see.” And hope.
For someone who was so used to treating other people decisively, this was a nightmare. Hoping just made me feel more desperate.