The Day I Saw Cerebral Palsy

We went to Primary Children’s Hospital in Salt Lake City the week of Easter for an MRI and a consultation with pediatric neurologist. It was the nearest area of coverage for our lousy student insurance so we made the nine-hour drive hoping to save some money. James and Daphne stayed with family in the Salt Lake area so Doug and I could both be with Nathan. We arrived at Imaging at 6:30am, the first patients of the day. We followed the tech into a back room where a sedation team waited. Everything went smoothly and Doug was soon rocking Nathan in a rocking chair that sat incongruously next to the enormous MRI machine. As he rocked, the nurse quietly injected the drugs into an IV line. Nate fell asleep within 30 seconds and Doug and I where ushered to a parent waiting room.

Hungry and nervous we opted to grab some breakfast at the cafeteria. Over pancakes I observed all the people casually getting breakfast too. Some had ID tags on, others did not. For those others, parents I assumed, I wondered what brought them to the hospital at 7:30 am. Some parents looked like me, nervous and unfamiliar with the surroundings. Many more, however, looked as familiar and comfortable in the hospital cafeteria as they would in their own kitchen. I thought about those parents the most.

When we returned to Imaging, it seemed to be a whole new place. The second, third, fourth, fifth patients of the day, plus some, were in waiting room and recovery area. I wondered when they arrived and why I hadn’t noticed them. We were only at the cafeteria for 20 minutes. A people-watcher anyway, I hung on the verge of sensory overload. As I sat with Nathan waiting for him to wake up I couldn’t help but observe the hospital patrons. This cute little girl, what was she here for? That tiny new baby, why was he here? I was humbled and overwhelmed by the worry and questions and unknown hanging ominously in the air. Nathan would be fine.

As we prepared to leave the pediatric radiologist indicated he wanted to talk to us. He had ordered an additional CT scan and wanted to explain why. He took us back into his office and for the first time I saw my son’s brain and the markings of cerebral palsy. I didn’t expect to feel so emotional when I saw the areas of damage. Scarring, calcification, abnormal pockets of fluid. It was real. Nathan had damage to his brain.

The radiologist decided to do a CT scan when he saw calcification patterning that would be more visible with CT scan than with an MRI. “This is a very typical of the “footprint” cytomegalovirus leaves on the brain.” he said pointing to the calcifications.

“Cytomegalovirus?”

“ Yes, a virus that is the most common cause of brain damage in developing fetus than any other event or fetal anomaly.”

My mind whirled. Had I been sick? Had I given Nathan a virus in utero and that caused this damage? No, this wasn’t my fault; please say it wasn’t my fault. I walked out of the hospital nauseous with guilt.

The next day we met with the pediatric neurologist. He had a calling to work with children whether he knew it or not. His demeanor was gentle and Nathan, Doug and I were immediately put at ease. He started with my history- pre-term labor, separated pubic symphasis, bed rest, gestational diabetes, a seizure at 28, possible torn placenta, no fetal movement, normal vaginal delivery. He pulled up the images taken the day before and began to examine them. I couldn’t contain myself and blurted out had been consuming my insides for the last 24 hours. Was this the result of Cytomegalovirus?

The doctor thought for a moment then asked more questions about Nathan’s health at delivery. “No.” he said shaking his head. “This damage was done very late in pregnancy. If there was an infection so close before birth, Nathan would have shown signs--enlarged spleen, poor apgars, and a host of other problems.”

“What about the seizure I had at 28 weeks? It was at the doctor’s office and I was monitored the whole time. The baby’s heart rate was good and he never stopped moving.”

“ No.” he said again looking at the pictures. “ Look at all this healthy structure. The brain is still developing at 28 weeks. This brain was developed when the damage occurred. Probably during the time you felt too little movement. The patterning is consistent with lack of oxygen or blood flow to the brain.”

What was done to Nathan’s brain was done, regardless of whether or not I “caused” it. Even if a seizure or a case of cytomegalovirus was responsible for the damage, both of which would have been out of my control, I felt enormous relief. For some reason the guilt of having “caused” Nathan’s brain damage absolved without bothering to discriminate that a torn placenta was part of my body too. Irrational equations but whatever soothes I suppose.

“So,” the neurologist summarized, “about 5-10% of Nathan’s brain is affected but I’m optimistic about how much healthy structure he has.” He went on about the brains plasticity. “ He has a 50/50 chance of having seizures but since he hasn’t had any within his first year, that’s a great sign. Cognitively things look really good but his left leg, right leg, right arm and face seem to be primarily affected. They can do amazing things with therapy. Just make sure he doesn’t become any more stiff.”

“So this is considered cerebral palsy?”

He paused. “Yes, this is cerebral palsy, what I would consider ‘mildly affected.’ Unless you want to follow-up with me, I don’t think you need to make the trip again.”

"Great. Okay. Thank you."

And that was it. That was our trip to the pediatric neurologist. Nathan had an official diagnosis; I had for sure a section to go to in the library and a one-way ticket to a frontier I wasn’t packed for.