At report I learned that the full-term newborn I'd be caring for, Baby X, was suffering from a rare genetic disorder that is almost always fatal. I found him in the laminar flow room, wrapped inside layers of royal blue sterile drapes. Sterile gauze dressings covered him from head to toe. Areas of weeping red skin peeked through where the dressings met. Bits of sloughed-off skin were visible on the drapes. His face was the least affected. Big brown eyes with long lashes stared up at me, and chubby cheeks confirmed good prenatal nourishment. My instinct was to touch him, but any human contact would exacerbate the sloughing of his skin.
Baby X was not expected to survive the next 48 hours. The burn-like sores on his skin would be accompanied by insidious internal tissue necrosis. The destruction of his tracheal tissue would ultimately make breathing too difficult.
His mother was upstairs recovering from his delivery. Her two previous children had already died from the same autosomal recessive disorder. Developmentally delayed, she functioned at the level of a nine-year-old. She would not name the father, but my rudimentary knowledge of genetics suggested that he was probably the father of the other babies as well. At report, someone had mentioned the possibility of incest. But that was the concern of others now. My problem was the baby.
I asked whether he had a do-not-resuscitate (DNR) order. I didn't want to see this dying child with tubes in every orifice and drugs running into his tiny veins. To my horror, the answer was "Mom wants everything done."
Some parents fail to understand that "everything done" hurts. "Everything done" means needles and blood work and tubes. It means suffering for a baby who can't stick up for himself. I needed to be his advocate. I needed to protect him from the person who loved him the most in this world.
I called upstairs to the mom's room and insisted she visit her baby as soon as possible. I called the attending physician, since a DNR order is the responsibility of the attending and I needed to know how much she'd already discussed with the baby's mother. The baby had already had episodes of breathing difficulty that required intercession. We needed to act without delay.
The attending and I were with Baby X when his mother was wheeled in. We gave her time to take in everything. We understood the delicacy of the situation. A moment like this, if handled ineptly, could leave an everlasting scar.
The mother had an endearing, childlike quality. She cautiously touched her child's hand and watched as his tiny fingers curled around hers. Then she said matter-of-factly, "I just want to know why I can't be a mother. Why do all my babies have to die?"
The attending physician explained the genetics of the disease and its progressive and hopeless nature. She tried to use simple language. She emphasized that the baby's suffering would only increase with efforts to extend his life. After this speech, she left. I wished I could too, but nurses don't have that luxury.
I sat down next to the mother and held the hand that was not holding the baby's. We formed a little circle of pain. She turned to me and studied my face. "You got kids?" she asked. I told her yes, I have two boys. She said, "You're so lucky." I vowed never to forget that fact.
I asked whether there was anyone I could call for her. "I don't have any friends," she said. I asked about the father. "He's gone," she said.
We talked for a while. I learned that she lived in a group home and worked at a job designed for developmentally disabled adults. She loved to watch TV. Her favorite movie was When Harry Met Sally [horizontal ellipsis] her favorite ice cream Ben and Jerry's Chunky Monkey. She was all alone in the world. This baby was supposed to end that. She had really thought this baby would be okay.
She gazed out the window at the tall buildings and whispered, "I know I have to let him die. I don't want him to suffer no more." Tears spilled down my cheeks. She looked up at me, shocked. "Now," she said, "you're not supposed to be crying."
That afternoon, when it was all over, I used my lunch break to go get a pint of Chunky Monkey. I found Baby X's mother asleep with the TV on. I left the pint on her bedside table with a spoon. Her nurse said she'd be waking her up soon, so I knew the ice cream wouldn't have time to melt. Maybe she'd feel a little better when she saw it, knowing that someone had brought her favorite.