Who could she call? Isaac’s father had moved a week after Eve had told him that she was pregnant. She didn’t even know where he lived.
A green line moved across the screen above Isaac’s head. Each rise and drop on the graph represented a beat of Isaac’s fluttering heart. Wires connected to pads on the baby’s chest communicated the heart’s efforts to the monitor. Medications dripped into Isaac’s frail veins to help his heart propel blood through his vulnerable body.
Eve’s mom had stopped coming to the hospital because she “just couldn’t stand to see the boy hooked up to all these machines and things.” Eve knew that she wouldn’t come today, so she didn’t bother calling.
Eve didn’t want to come to the hospital either, but she did. She came every day because as long as her little man was willing to keep on fighting, then she had to be there. He was holding on to life through tubes and wires and machines. The least she could do was to show up and hold his hand.
She moved her hand down to Isaac’s feet and cupped both of them in a single palm. A nurse had explained that premature babies like that feeling; the feeling of being supported. Isaac opened his eyes and stretched his scrawny legs to push against Eve’s hand. The pressure was slight, but it was there. Eve smiled and whispered, “Stretch and grown, Little Man.”
She looked back at the phone. Her friends were in college or at work. Lynn had visited a few times, but the last time she had stopped by, she had asked, “How long can you put him through this?” And had said “I don’t know how you do this.” I do it because I have to, Eve had thought. She wouldn’t call Lynn today.
Yesterday, a young doctor was sitting at the nurse’s station. He smiled at Eve then approached her and asked to speak with her privately. In a small quiet room with pictures of sunflowers and rainbow on the walls, this doctor had suggested that her son be taken off life support.
Over the last two months Eve had learned a lot. She had learned about APGAR scores, oscillating ventilators, interventricular bleeds, shunts, heart defects, bilirubin lights, and oxygen monitors. Now she was learning about palliative care. She let the doctor talk and she stared at the rainbows.
“The bleeding in Isaac’s brain may start again at any time,” this doctor had said. “We think there has already been significant damage. More bleeding will lead to even more damage.”
Then he listed all of the problems Eve’s son could have. He may not be able to walk, talk, eat or even breathe on his own. Eve looked at the sunflowers and remembered the late summer days she had spent at her grandmother’s house as a girl. There was not much for a child to do there, so she would take walks along the railroad tracks behind her grandmother’s property. Purple, yellow and white wild flowers grew along the tracks. She considered them flowers but maybe they were weeds. In any case, she had never seen sunflowers at her grandmother’s. The sunflowers that surrounded her now were perfect. They would never be confused for weeds.
“So, if we continue with the plans for a tracheostomy and a feeding tube, we are committing Isaac to a very difficult journey. We may be sentencing him to a very difficult life.” The doctor stopped and stared at Eve. He was waiting for her to respond and Eve knew it.
“Every life is difficult,” Eve said. “Isaac’s life may be harder then most, but he is fighting to hold on to it. I can’t stop while he is fighting.”
“Mom,” the doctor said, “He is losing the fight. He should be at least trying to breathe on his own. He is not. He should be able to process feeds through his belly. He cannot. He isn’t gaining weight.
He can’t be outside of the incubator because he can’t keep himself warm. If he gets an infection, I don’t think he can fight it off. Permanent breathing and feeding tubes will just prolong a fight that he can’t win.”
In the last few months Eve had talked to neonatologists, cardiologists, infectious disease specialists, pulmonologists, neurologists, and nurses. This doctor had introduced himself as a palliative care physician. The other doctors had said that Isaac had a long fight ahead of him, but none of them had said that the fight was lost.
Eve continued to stare at the bright yellow sunflowers. Her throat felt tight and her eyes began to burn. She felt her chest heave in silent sobs.
The young doctor pushed a box of tissues towards her. “I am sorry to be so blunt, but we think you need to know the truth. We don’t want to hide anything from you. You and Isaac have put up a courageous fight but if you let this go on, we will just be prolonging a fight he can’t win.”
So, today Eve stood alone next to her son’s incubator watching the green line and listening to the ventilator. Her warm hand pressed gently against Isaac’s feet but this time he didn’t respond.
A nurse and the palliative doctor stood across the room whispering. The nurse looked at Eve out of the corner of her eye then turned back to the doctor. The doctor nodded and they both walked towards Eve wearing grim smiles. “Are you okay, Mom?” the doctor asked.
Eve nodded, but of course she wasn’t okay. What could she do for her boy? She couldn’t protect him. He didn’t have enough time inside to allow him to survive on the outside. She tried to fight for him here in the hospital. She asked all the questions she knew to ask. She wouldn’t let anyone touch him without washing their hands. She was there everyday touching him, whispering to him, singing to him. Now what could she do for him? She could let him go.
No birthdays. No Christmas mornings. No rainbows. No sunflowers.
No more blood draws. No more surgeries. No more grimaces of pain. No attempts to cry around a breathing tube. No silent tears.
No more false hope. No more fighting a battle that can’t be won.
“You gave him every chance,” the nurse said. “You’re making this decision out of love. This takes courage.”
Eve half sat, half fell into a chair next to the incubator. The nurse put a gloved hand on her shoulder and began to work with her son. Eve heard her whispering to Isaac but couldn’t understand what she was saying.
The doctor placed a warm blanket in Eve’s lap. “I can take some pictures of you and Isaac if you would like.” Eve nodded and felt the warmth leave the blanket as the nurse turned towards her holding her son. The boy was wrapped snuggly and was wearing a knit cap on his bald head. The nurse passed the baby to Eve and covered him with the blanket.
The boy felt weightless. There was heat coming off the blankets and out of the incubator, but Eve was shivering as she held her son. His eyes were closed and would never open again. His delicate mouth was wide open but he didn’t seem to be breathing. Eve stroked the paper-thin skin of his cheek and one of her warm tears fell on his cool flesh.
“Hey, Eve.” Eve looked up, wiped her face and tried to smile while the doctor took a picture with his phone. The doctor knelt next to her chair and placed his bare hand on her arm.
“He is beautiful. I am so sorry Eve. I am so sorry little man.” Eve took a deep breath and exhaled one long shuddering sob looked back at her son. The doctor walked away and pulled the privacy curtain closed behind him.
The mother and child sat alone and the mother told the child about a railroad track he could follow if he was very brave. She couldn’t go with him. He had to walk on these tracks alone. But if he was courageous and kept on walking despite his fear, his courage would be rewarded in a place where rainbows blossomed in cloudless skies and where perfect sunflowers grew as tall as oak trees.