The Day Cerebral Palsy Entered Our Life

I sat professionally in the exam room. I had in my mind a list of concerns I intended to smartly address. I was prepared to give dates, times and specific details. I sat alert and attentive but inwardly nervous as our new pediatrician played with, then held Nathan. Was he seeing what I saw? Was he going to tell me Nathan was developing just fine, don’t worry? I liked this pediatrician. He played and interacted with Nate. He wasn’t in a hurry.

He chuckled as Nathan grabbed at his mustache. “You can get him dressed now.” he said handing Nate back to me. I looked at the doctor expectantly as I snapped the Onesie. “I think we are looking at cerebral palsy here. It could be ten other things but it really looks to me like cerebral palsy.”

“Oh, okay.” I said as if someone had just told me a play date had been cancelled.

He kept talking, validating my own observations. No need to go into my rehearsed list of concerns. The next step was to contact Early Intervention to schedule an evaluation. Check. I’d already scheduled an evaluation for my own curiosity. Regardless of their evaluation he wanted Nathan to have an MRI and visit with a pediatric neurologist.

“Can you recommend a specialist? What does an MRI on an infant entail?”

I pragmatically asked all the relevant questions. But somewhere in the back of my mind, pushing it’s way forward, was hysteria. Cerebral Palsy.

By the time I left the office and had Nathan buckled into his car seat I was in a stupor. This was not what I expected.

**************************************************

Knowing we were moving in January I had resolved in my mind to take Nathan to see a chiropractor in our new city. At nine months he wasn’t sitting and was stiff to the point where I thought he might be in pain. I wondered if something in his little body was kinked during his fast and furious delivery and that was why he only used the left side of his body. I opened the phone book and thumbed through the chiropractic listings. Choosing from a sea of unfamiliar names was impossible so in an Indigo like gesture I made a silent petition not unlike “Guide my sword.” My finger landed on a simple and tasteful advertisement. She was the one I had to trust with my baby.

My petition was granted when we met Traci. She was great with Nathan and wanted to see him again. As we left she encouraged me to follow-up with his primary care doctor. I was puzzled and worried by her advice. How many chiropractors encourage following up with an allopathic doctor?

Somewhere in vague recollection cerebral palsy had once come to my mind but left in a hurry. It came and went so fast I never even bothered to sit down at the computer to Google the possibility. Now driving home from the pediatrician the panic of what I didn’t know rose with suffocating intensity.

When I pulled up to the house the kids and my friend Amy who was babysitting, were playing outside. “How did it go?” my friend asked.

“Well, the doctor thinks Nathan has cerebral palsy.” I laughed without much humor when I said it out loud. It seemed laughable, right?

Amy didn’t laugh. “Oh.” she replied eyes wide.

“Yeah, we’ll see what Early Intervention has to say and then schedule an MRI.”

“Oh, wow.”

“Yeah, I just thought the doctor would just recommend physical therapy or something. Wasn’t expecting to this one.” I laughed the same humorless laugh and went inside to put Nathan down for a nap.

I put on a movie for James and Daphne and I sat down to the computer to educate myself as much as possible with Internet blips about this new presence, cerebral palsy. I founnd law firms specializing in birth injuries sponsored the most comprehensive sites. I tried not to think about it but my pregnancy and every detail leading up to labor and delivery flooded my mind and with it, anger and the dawning realization that it was quite possible Nathan could have acquired a brain injury.

***************************************************

I told them and they sent me home. I told them about the incredible and sudden pain that radiated from my abdomen and nearly left me in heap on the bathroom floor less than an hour ago. I screamed for Doug and we left for the hospital immediately. Something had happened to my placenta, I needed my baby checked. They didn’t feel my urgency. “Honey,” the older nurse said, “what you felt was probably round ligament pain.” An hour of monitoring produced evidence of a steady heart rate. The baby was fine, I was fine, sign the discharge papers.

Three days later, exactly my 39 week date, when I showed up a the hospital for the second time that week and a sixth time that pregnancy, if anyone called me “Honey” again I’d go ballistic. My baby wasn’t meeting his kick counts despite my best efforts to rouse him. I was demoralized, utterly untrusting of my feelings but inwardly driven to make sure my baby was all right. Paranoid, mental, hypochondriac, nut case or not, I needed to have him checked.

I didn’t understand what exactly it meant when the nurse wrinkled her brow over the fetal monitor strips. “His decelerations aren’t what we typically like to see. I’ll go ahead an send the readings to the midwife on call.” But I felt a sense of relief and vindication. I wasn’t overreacting.

Three hours later a midwife I only recognized from her photo on the office wall came to check on me. “We typically don’t induce on Fridays but since I’m here anyway, I can get you started. What would you like to do?”

I began to cry. What would I like to do? You are asking me what I want to do? I wanted a baby...but I wanted him to come on his own...but I wanted him to be born now...but I wanted an interference free delivery...but I wanted him to be okay....What do I want to do? You are asking a woman who’s been on bed rest for four months, who’s been vomiting and in pain nine months, who’s in the hospital for the second time this week and the sixth time this pregnancy what she wants to do? What do you think you should do? What do you think is best for the baby? I stifled the scream that rose in my throat.

“It’s okay to be induced.”

“I won’t be ruining your Friday night?” I asked in all seriousness, my insecurity brimming over.

“No, I’m here already.”

“Okay, I want to have him tonight.” I said watching her face to make sure she approved of my decision.

She checked me and with surprise pleasantly informed me I was already dilated to a 5. Although I was having regular contractions, they still weren’t very intense. The midwife placed me in care of another nurse and left. As the nurse started an IV line, I told her I didn’t need Pitocin to get me started. My other two deliveries progressed rapidly after breaking the bag of waters. Within two hours of my water breaking I tend to have a baby. But, the nurse said, Pitocin was procedure. I knew most hospital policy is to have an IV line started so in the event of a retained placenta, Pitocin can be immediately administered to induce contractions. I let it go. The midwife had just returned to break my water.

She looked worried as she discreetly instructed the nurse to obtain samples of the amniotic fluid. There was maconium and blood in the fluid and they needed to do an amniotic transfusion. Didn’t maconium possibly mean a baby under stress? No, not always. More questions came to mind but the pace and activity in the room quickened and intensified. Pitocin was started; the respiratory team and nurse anesthetist were called. The contractions were coming hard and fast. The nurse anesthetist paused several times to let a contraction finish. He heard the Rice Krispy snap, crackle and pop as he inserted the needle. I felt the sound but as the injection pressed into my nerves, I knew it wouldn’t work. The concoction flowed down the left side of my lower back and pooled my buttock cheek.

“How’s it feelin?” the anesthetist asked. “I’ll be back to check on you.” And with that he left.

The epidural wasn’t taking. My left leg was slightly dulled to the pain of the ever-increasing contractions. The major intensity focused in the inguinal area on the right side. I was on fire.

“I’ll call the anesthetist back to see if he can redirect the medication,” one nurse said.

It was too late though. I was in full-blown labor. I could only concentrate on not panicking. Breathe, breathe. An hour passed and my husband and sister began to talk between themselves. “The contractions aren’t ending. She doesn’t need Pitocin. They need to turn the Pitocin off.” A nurse watched the monitor intensely.

“She’s not resting between contractions.” the nurse informed the midwife. No response.
“She’s in one straight contraction, we need to turn the Pitocin off.”

Finally the midwife looked over. “Turn it down to six.”

Flood lights, people and nurses everywhere. Breathe, breathe. Don’t panic. Push, push. Breathe, breathe. Push. Pause. The respiratory team suctioned. Another push, and there he was, the baby I worked so hard to make. He was finally here. Only an hour and a half ago I was sobbing about whether or not to have him tonight. Now I was sobbing because he was here. Here and perfect. The midwife finished stitching me up then came to the side of the hospital bed. “It is such a good thing that we didn’t wait to have this baby. Had we waited, the outcome would have been much different.”

Even in the post-delivery euphoria I wanted to know what she meant. She briefly described the placenta as torn and deteriorating. I felt that twinge of vindication return. I received baby Nathan in my arms again with the words “Had we waited, the outcome would have been much different” lingering in my mind.

***************************************************

“Well, he’s kind of shaky.” the nurse explained as she took him from me. “We need to check his blood sugar and probably feed him a bottle.”

“Were you taking any medications during your pregnancy?” the pediatrician making the rounds asked. “He’s pretty shaky but his blood sugar is fine.”

“He’s really shaky.” the after-hours doctor commented two months later. “Have you talked to your pediatrician about this?”

Yes, but the jitteriness is an immature nervous system, as is the projectile vomiting. The colic is from an over-production of foremilk. His small head circumference is not a concern, nor his left-handedness, nor his irritability, nor stiffness. I’m just an over-tired, stressed-out mom who wants all of the inconveniences having a newborn and being post-partum taken away with a diagnosis from a doctor.

But “yes” is all I say.

***************************************************

Now it’s time to call Doug. He’s 600 miles away finishing some last experiments for his dissertation. He’s been gone for nearly two month and I hardly know how to talk to him anymore. I call him at the lab. “Hi, is Doug available?” My voice has a tremor. Get control.

“Hello?”

Breathe. “Hey. So I took Nate to see his new pediatrician today. He thinks Nathan has cerebral palsy.” I say it all in that one breath. There’s silence on the other end and I lose my fragile control. I start to cry and don’t stop for the next three days.