Unexpect the Expected: Diagnosis Edition Part 1
I sat there quietly, motionless, and fighting back tears. Cerebral Palsy. Those words felt like ice slicing my heart open in one swift motion.
On October 1st, 2020, my two-year-old son, Mark, received a diagnosis of Cerebral Palsy. It wasn’t unexpected, so to speak. It wasn’t necessarily a secret. We weren’t technically blindsided by it. We thought we had more time to work through it- work through the stiffness in his muscles. We thought we had more time to do more in depth massage therapy, more intense physical therapy. We knew it would come.
When Mark was in the NICU, the doctors noticed some abnormalities in the way he moved about his incubator. After reviewing previous scans from when he was still growing in my stomach, they felt it best to do an MRI. At 2 months old, Mark weighed just over 3 pounds and was strong enough to have his MRI on his brain. This came back with the result of Periventricular Leukomalacia (PVL).
PVL is the softening of the white brain tissue near the ventricles. The white matter is the inner part of the brain. It sends information between the nerve cells and the spinal cord, and from one part of the brain to another. PVL occurs because brain tissue has been injured or has died. A lack of blood flow to the brain tissue before, during, or after birth causes PVL.
The trouble with PVL is that you cannot really grasp the “true” severity of it after getting the diagnosis. You have to watch how the baby grows. You watch their milestones. You watch their weight gain or loss. You watch the way the move their arms and legs, turn their heads. You look for an occasional twitch. The damaged nerve cells cause the muscles to become tight or shake. They may be difficult to move. There may be cognitive problems, trouble with learning or thinking. There really isn’t an exact cause for PVL, but most babies with PVL later earn the diagnosis of Cerebral Palsy.
After being told about the PVL, Mark immediately began receiving early intervention services in the NICU, such as Physical Therapy (PT) and Occupational Therapy (OT). After we were discharged from the NICU, Mark continued his therapies in an outpatient setting. Every week we would have an appointment with PT and OT. Every day he would get stronger and he would move a little easier, smoother. We were going from “he won’t be able to do much of anything for himself” to turning his head, rolling, sitting, crawling, standing, walking, and now running. Did I mention he talks non-stop?
Mark had made great strides in his skills and abilities. His improvements were a shock to his doctors that three of his specialists were going back and forth on whether or not to give him a CP diagnosis. They thought given his improvement, maybe he could work through the tightness- not cure it, but make it where it barely affects him. They believed that maybe a new medication (Baclofen) would nip it in the bud. It was their hope that maybe more stretching would help. It was suggested “why not add in deep tissue massage therapy in there too?” All of these working together… we could “beat” this. We can do it. We can. I just need to stay on top of it.
We had an appointment scheduled for December 21st, 2020 where his Pediatric Rehab doctors would make the final decision on whether or not to give Mark the CP diagnosis. However, Mark had a scheduled follow-up with his Neurologist to discuss his most recent MRI scans on October 1st. It was in that office visit; I was told “there is no doubt about it. Mark has CP.” and that was it. Just like that… we received the Cerebral Palsy diagnosis.
Our “not-so-new” normal was about to begin.
**Special Note: The work that Mark’s PT, OT, and Speech Therapist (ST) put into his development is insurmountable. There are simply not enough words that can express how truly amazing these women are. I cannot possibly thank them enough for everything they have done and continue to do for Mark. Without their patience, dedication, and genuine love for my child, I do not think Mark would be where he is today. Without the skills they’ve given me to work with Mark at home, I do not think Mark would be where he is today. Special thanks to Wolfson Children’s Rehabilitation Team. Extreme amounts of our gratitude go to Joanna and Nicole (NICU Therapies), as well as Brooke, Rachel, and Shannon (Wolfson Rehab at Mandarin).**