Diagnosis

We had the sinking feeling that something was wrong after Elena was a year old. Still not talking or sitting up by herself—while her peers were nearly walking and feeding themselves. Our pediatrician referred us to Kluge Children’s Rehabilition Center (KCRC) the their head developmental pediatrician. By this time, he had warned us that the eye problems probably indicated something neurologically wrong, and told us in advance that we might hear the doctors at Kluge say cerebral palsy. I was very thankful for the warning, as this was the first time anyone had used those terms. We visited with Dr. Blackman at KCRC when Elena was 14 months old, and the diagnosis was pretty immediate: she had spastic diplegic cerebral palsy, and it was really too early to tell if she was mentally impaired. Physically she seemed “not too bad”, and he said that if children are sitting up (even with assistance to get there) by age 4, chances were extremely good that they would be ambulatory in some fashion.
During the appointment, Jason and I basically just nodded our heads, logically taking it all in. Jason asked a couple questions related to intelligence, or certain expectations, to which the doctor basically said there was no way to know. When we left, I was absolutely devastated. The realization that the hope of Elena having a temporary problem, but actually being like a normal child had completely evaporated. In an instant I became the parent of a special needs child—a position I never wanted or expected to be in. I thought, how is this fair? There are women out there who wreck their bodies, who are so irresponsible with their pregnancies, who have healthy babies—why ME? Why US? I couldn’t stop my mind from reeling—would my child know I loved her? Would she be able to tell her parents she loved them? Could she ever feed herself? Would she ever sing a song? Would she ever know what it was like to climb a tree? Pick up a penny? Walk on grass? Walk on anything? Ride a bike? Play on a soccer team? Swim in the ocean? There were so many things about my childhood experience I felt like had been struck off the table. I tried to positive around Elena for the rest of the day, but I was miserable. Jason took me aside, and said “Amy—look at her. She is the same beautiful baby girl she was yesterday. Think about that.”
The next step was her MRI. CP is a clinical diagnosis, so an MRI isn’t necessary to qualify her condition. It can confirm a CP diagnosis. The doctors hinted that the scan gives information about the extent of the damage, and they may try to extrapolate future symptoms or expectations. Elena was very functional, so we expected the scan to show a nearly normal brain. We were wrong.
Elena’s scan was horrible. The active (oxygenated) portions of the brain in an MRI scan are white—her scan was basically a black hole where the white matter should be. Again, I was completely devastated, and had crying fits for the majority of the day. We had a PT appointment later that day—that therapist had ‘seen it all’, including tons of MRIs, and she really made my day better. She said she’d seen scans of brains that looked normal, but the children were wheelchair-bound…and she’d seen scans where the brain looked completely black, but the children just walked funny. She said the brain is a funny thing, and you never know how it’s going to wire itself to work. “A picture is just a picture.”
I decided that all the news I’d get from doctors, for the next year, would probably be bad. I expected it to shape up after that. Turns out, I was right.