I looked at the woman on the other side of my desk, clutching the tiny child on her lap. How much did she really suspect? I wondered. The baby was fifteen months old, and the examination I had just undertaken sent chills down my spine, especially as the mother seemed so untroubled.
I tested the waters. “Do you know why your Health Visitor made this appointment?”
She shrugged. “She was concerned. She thinks she should be doing more by now.”
“And what about you? Are you concerned?” I looked at the child, her head turned to one side, elbows tightly bent, fists clenched with the thumbs across the palms, legs scissoring, the total stiffness of her body demonstrating the spasticity of the muscles.
The mother shook her head. “No. She was more than 3 months early. She’s been desperately sick for the past fifteen months. Of course she’s behind in her development. You’d expect her to be. But I’m not worried. I don’t think there’s anything wrong with her.”
I studied her carefully. How much should I tell her? I had got to know this young lady quite well. This was her second very premature baby in just over two years, and I’d seen more of her than of most of our parents.
I remembered the day I mentioned that the baby had Wilson-Mikity Syndrome. Most parents would have asked me superficial questions and left it at that. Not this one. She said nothing at the time, but came back the next day full of information, facts and figures, using medical terminology with clear understanding. Long before the days of computers, she had evidently been to the public library and sat there until she had committed to memory everything she could find out about Wilson-Mikity Syndrome. She knew it meant her baby could die, and that if she recovered it might take weeks or months. She could cite studies of previous cases. Right then I set her down as someone with an enquiring mind and a lively intelligence.
She was shifting a little uncomfortably in her chair, waiting for me to say something. I had been silent during these reflections, to the point where the silence was becoming awkward. What should I tell her now? She genuinely seemed blithely unaware of the seriousness of her baby’s condition. I could not get any of the normal motor responses from the child. Her limbs didn’t jerk when I tapped her knees and elbows with the hammer. Her head obstinately refused to go into any position except turned to the right. Her fists would not uncurl, and her arms refused to extend – the left one was far tighter than the right. Already the adductor tendons were showing signs of shortening so that it was becoming difficult to part her legs enough to put her nappy on. There was little sign of recognition or intelligence in her eyes. I was certain the child would never walk. Probably she would never sit up unsupported. I doubted whether she had the intelligence ever to learn any speech.
And here sat her mother, telling me that she expected her daughter to be behind in her development, and didn’t think there was anything wrong with her. She needed to know the truth, but did she need to know it all right now?
“I have to tell you,” I said, “I’m very worried indeed.” I told her I would make another appointment, that I needed to see her again. “There is a problem with her motor responses,” I added, knowing that the mother would have no idea what this meant. “She is going to need some physiotherapy.”
She looked at me with a penetrating gaze for a few moments. “What exactly are you saying?” she asked.
“What exactly I’m saying,” I repeated, “is that she has a problem with her motor responses and she’s going to need some physiotherapy.”
“Ok.” The mother took the appointment card I held out to her and rose to go. I was pretty certain by the time she came back she would have been to the library, looked up motor responses, and figured out for herself that her baby had severe cerebral palsy . There is just no easy way to say this to a parent. I could only hope I had handled it right.
(This is a true story, and I was the mother. I have tried to imagine it from the doctor’s viewpoint.)
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