In Laura’s first year, it became obvious that there were serious medical problems. She had a significant brain malformation that was similar to Dandy-Walker syndrome. Possible hydrocephalus required a shunt tube to be placed to drain the fluid from the center of her brain to her abdomen. She was just a year old when Dr. Redding, the neurosurgeon did this in Little Rock.
Her left ear was small and the internal ear structures were not formed correctly. Her left face muscles were paralyzed because of damage to the facial nerve which also passes through the ear in its path from the brain. Because her left eye didn’t blink, she immediately developed chronic corneal abrasions.
She never rolled from back to front. It wasn’t till she was about three that we first heard her laugh. The ear specialist she saw described poor hearing and the eye specialist found optic nerve damage. Though we never knew for sure what she could hear or see, we did know that as she got a little older she did have a cute little giggle when I played with her like daddies do. The rougher I played with her the more she seemed to giggle.
She was never developmentally more that 3 to 6 months old. She never sat or rolled over. She never had use of her hands. She never spoke any words.
I got the phone call from Dr. Lammer sometime before Laura was a year old. He was one of the few specialists studying what is now called fetal isotretinoin embryopathy, a diagnostic term I have hated since first hearing it. He asked if he could come and see Laura when he was in the area, though he didn’t know when that might be exactly.
Five years later, I got another call from Dr. Lammer. He was finally in the area and asked if he could come by and see Laura. He spent the entire day with Stacy and Laura and me in my office. His coming is just one of a string of God’s flags along our road that says “I’m still here and I’m still watching and I still care.”
We learned that there were only a handful of other children who were as severely affected as our Laura. None of them could laugh, let alone respond to painful stimuli such as a needle stick. Laura surprised him when Dr. Lammer drew blood samples and she winced in pain. It was heartbreaking to learn that had Stacy stopped taking the Accutane just four days earlier, very likely Laura might not have been affected at all.
Dr. Lammer also told us how Laura was more severely affected in comparison to the other four to five hundred children in his patient panel. It meant that we were probably in uncharted medical territory. This meant that as her de facto Pediatrician, I would know more about the condition than the vast majority of even Pediatric specialists anywhere. Daddies are just not meant to shoulder the burden of the medical care for their children. I have always had to.
Still one thing was curious but also encouraging. Dr. Lammer’s surprise about Laura’s perception of pain and joy was significant to us. We felt the warmth of God’s heart and blessing toward us. Roadside flags like that came often enough in the future to give us strength and encouragement. We never heard from Dr. Lammer after that but we kept believing that our Father was walking with us.