I looked up at the doctor across the crib who is still hovering over him and checking his ventilator and trachea. Wildly he flailed as the doctor touched his abdomen. I tried to calm him by holding his hand. This is the first I noticed his fingers, some webbed together nearly to the ends, and the digits not coming from the palm in a normal way, but more like a sunburst. I looked more closely at him then. His legs were small and his feet were clubfoot. He has a feeding tube in his distended abdomen. His lips were cracked and crusted and through his open mouth, I could see several jagged sharp teeth coming from his gums at odd angles. Froth poured from his nose. Through his cheeks he had 4 pins on each side that were screwed into his jaw. The doctor was "lengthening" his jaw, it had been broken during surgery and slowly each day, the screws were separated further and further. It looked incredibly painful.
When the doctor had finished the exam, I asked, "Is he receiving physical therapy?" I wondered about his contractures in his legs. The doctor looked at me and sort of laughed. "No! I am trying to convince him mom to sign a DNR order, but she won't! This is his life, this is the best he is ever going to have. This is no life for anyone. He should not have ever gotten this far."
I looked back at the baby. His head is the size of a basketball. His features so close together they would fit in the palm of my hand. His ears line up at his jaw. He blinked and looked right through me, not even seeing me. Maybe the doctor is right, I thought. This would really be a nightmare life to have.
Back in one of my classes, we had a discussion about ethics. I think I wrote something that seemed right to me at the time; honestly, I may have just blown it off and answered what sounded good. I wish I had given it more thought. What right does anyone have to keep this child alive in this state? Why not just disconnect him from the ventilator and let him rest in peace?
Again, I ran my fingers through his hair. I changed his diaper. His bottom was so raw, it was nearly bleeding. He has chronic liquid diarrhea. I applied his barrier ointment liberally. He wears adult diapers. Size small.... This is no life, is it Little One? I looked at him and he seemed to look right into my eyes. "God doesn't make mistakes" someone said. I turned to see who was there. No one. Startled, I returned my gaze to his eyes, and he blinked, his stare gazed through me once again.
Rattled, I weighed his diaper, removed my gloves and gown and washed my hands. I sat down at the desk next to him in ICU where his paperwork is. As I was filling out his charts, his mom came in the room. We talked as she put on her gown and gloves. She climbed on the stool next to his crib and said "Hi Papa!"
I watched as they interacted. I saw the way he responded only to her, to her touch, her voice. They were connected. I saw the look of love in her eyes for him. Her face lit up, her eyes - I am not sure I have ever seen so much love in someone's eyes. I felt mesmerized by the scene, I could not stop staring at them. She talked to him and played with his hair until he fell asleep, and then she came to sit in the chair beside me.
She began to tell me about him, her family. He was the 2nd born child. She had had 8 pregnancies. After he was born, he was immediately flown by helicopter to this hospital, and she did not get to see him for over a week. He has had a lot of surgeries, she said, but he's getting better. He is my gift from God, she said. We all love him so much, his older brother wants their clothes to match so I have to buy them matching clothes, like twins! They love each other so much! He gets so happy when his older brother comes to read him stories and they like to watch cartoons together!
I wondered how much of this was fantasized in her mind - a strange way of coping with his chronic illness, I guess. Denial maybe?
But, it shook my foundation, my thoughts on who gets to "pull the plug". Who has the "right to be God"...50 years ago, he would have been dead and buried. Now, through technology, he is kept alive. Who is right? Who is wrong?
We, as nursing students, are encouraged to Know What We Believe. That way, down the road, we won't be shaken to our core when faced with situations such as this. I thought I knew what I believed. Now it is in my face. A mother looking down with kindness, compassion, care, love, gentleness and hope on her child who only seems to see her and respond to her touch and her voice.
A child that seems genuinely thrilled when she is near.
I now understood just why the mother could not sign the papers. She knew it better than anyone. God does not make mistakes.
