Tortured thoughts....

Perhaps my turn of thoughts is because I am still recovering in some form from a recent illness.

Still...

Last night, I sat at the nurses station on Peds trying to finish some paperwork. From down the hall, I heard the sound of a child wailing and crying. I could not bear it. I asked who this was and was told that this neurodevelopmentally delayed 11 year old cries unconsoleable like this every night. Incredulous, I walked determined down the corridor to see who this patient was and why she cried like this.

LW is 11 years old. She was born to a mother who drank during her pregnancy. After a period of failing to meet developmental milestones and some physical and mental signs of cerebral palsy, she was diagnosed as having a 'chromosome 8 inversion' abnormality and consequent severe cognitive impairment. In my years as a scientist, cheering excitedly and participating in the revolutionary sequencing of DNA and the human genome, I had never envisioned the face I saw last night. There is no way to fix a 'chromosome 8 inversion'. It occurs in every one of the billions of cell in this little girl's body. It is a life sentence. The ramifications and effects are not completely known. Few people have this.

Needless to say, LW is in a foster home. Not many individuals have the emotional and physical resources to care for such children. They are high risk for abuse and neglect. Sitting in her room, watching her wail and cry, frustration and anger burned within me. Why was she crying? How could I stop it? What was I missing?

Her nurse and me checked her daiper, repositioned her, tried to soothe her, turned the tv on and then off, turned the lights on then off, tried everything we could think of. No effect. I tried a mild sedative, then another -- no effect. The crying continued. I sat at her bedside, making eye contact, trying to look into the window of her soul, praying for insight, a connection, a solution. I can only imagine what parents and caregivers must go through, year after year, night after night. I searched the literature on sleep and behavior disorders among those with cerebral palsy and neurodegenerative disorders. I found lots of articles that talk about the toll it takes on caregivers, things tried and failed. I read her medical records and found that this problem had been going on for a while and several solutions were tried unsuccessfully.

This patient came to us with a horrible wound at the back of her head and neck. We are unsure what it is, how it got there and exactly how to make it better. At about 4 am in the morning, I thought I would try giving her something for pain. A little bit of morphine put her into much needed sleep! There was no aha moment. Maybe this was pain. Maybe she was exhausted. Maybe she was just done for the night. Who knows? But she slept.

What does the wailing and crying of someone with 'severe cognitive impairment' mean? Is it pain? Is it just the behavior of a disorganized and disregulated brain that cannot calm itself? The patient cannot communicate verbally and does not appear to follow verbal commands, so who knows? As I sat beside her trying to calm her and soothe her, I felt like I was listening to a scrambled brain cry out. In a dark moment of frustration and despair, I found myself thinking, " why do we prolong such a life? Are we really making any difference with what we do?" Dark, scary thoughts that come not from impatience with the patient, but from a mourning heart and mind that cannot think of an answer to make the suffering better.

We live to fight another day. It is morning again. I hear that she slept for a couple of hours and is up and quieted down... for now. My heart is still in knots. I hear the sound of a scrambled brain in a spastic body crying and I don't know what to do. I am driven to find answers. I love what I do. I am haunted by what I do. I want to be better, smarter, wiser.