The best gift she could give him

by Dora

Crying. It has happened numerous times in my life. Every time I watch “Love Story.” When I’m particularly joyful. When I’ve used up all other avenues and must vent my frustration. In my personal life, it’s not a rare occurrence. However, it takes extraordinary circumstances to bring tears to my eyes in the work place.

At first, I found this odd. After all, I am a nurse at one of the foremost pediatric hospitals in the United States, and I work in the pediatric intensive care unit. I am literally surrounded by tragedy every day. However, I’ve come to understand that I’ve built certain walls that help me keep a professional distance from the heartbreak I witness every day. These walls are hardly ever breached, and when they are, it’s by the best of parents, not the worst.

The other day seemed like any other. I received report on K, a 13 month old baby who had spent most of his life moving from surgery to surgery in order to compensate for a heart condition he was born with. K was ill again, but he’d been slowly regaining ground over the last week: one step back,  two steps forward. His mother M came in early in the shift, with a smile, and a big box of donuts for the nurses.

We started running into trouble mid-morning. We had to give K extra intravenous fluids to maintain his blood pressure. We then had to start him on two continuous medicines to keep his blood pressure high enough to move the blood, oxygen and nutrients around his body. K’s oxygen saturations, which were never good, kept dipping below the range that kept him semi-pink. There was a lot of activity … drawing blood for lab tests; giving medications to make his blood less acidotic; changing the ventilator settings; adjusting his continuous drips to maintain adequate blood pressure, sedation and pain control; suctioning out his breathing tube; placing a foley catheter and measuring his bladder pressure; and explaining everything to M, who watched with wide eyes.

At one point, the fellow, an intelligent and compassionate physician, had the “quiet talk” with M. She explained that K was rapidly getting very sick, and wanted to make sure M understood all the options. The first option, which is always the default, is to do everything in our power, including chest compressions and defibrillation should the heart stop. It means that we continue doing everything until the patient recovers, or until death is declared. The second option is to continue what is being done now, but to stop escalating the care we were providing K. This involves giving him the same medications we were already giving him, but not increasing any of the treatments, and not giving compressions or defibrillation. Most parents choose the first option. This is understandable, especially if the illness or disease is new in nature, if the parents have little understanding of their child’s illness, or for those who are not yet ready to let go, for whatever myriad reasons.

Very few parents choose the third option, which is not always offered. It’s understandable, since it’s the hardest option. When the prognosis is grave, when there is little to no chance that the patient will be able to recover without severe disability or brain damage, or when the cure is harder than the cause, the parents are offered the option of withdrawing care. I actually dislike the term “withdrawal of care,” since it seems to heartless, when it can actually be the most compassionate act for a person in extremis.

Anyway, the fellow offered the options to M. M was startled. She was alone, and didn’t feel up to making such a grave decision. M asked for some time to think it over. Of course. It’s not a decision to be made lightly, either way. We continued on with the work at hand. M made some calls, to talk with friends, the cardiothoracic team next door, and with K’ father.

I was able to get away for a brief breakfast around 2pm. When I came back, the mother was speaking with the social worker and the hospital chaplain. The nurse who had been working on the baby while I was gone came to give me the interim report: the family had decided to withdraw. We were waiting for a private room to be made available and cleaned, and for the father and the sister to arrive. I went to the mother and she confirmed that she was ready to stop her K’s suffering, and to let him go.

It seemed to take an age for the preparations to be made. However, finally we were ready. We sat the mother in a large easy chair, and settled her swaddled baby in her arms. The father, social worker and chaplain were settled in chairs around her. K’s sister came in a few times, and was taken to a playroom when she didn’t want to be in the room with K. We increased K’s pain medicine, and gave him some extra sedation medicine. And we removed the breathing tube and stopped the heart medications.

Little K went fast. Within fourteen minutes, he was gone. In that time, he was held by his mother continuously, a feat that was impossible for most of the time he spent in the hospital. He looked calmer and more at peace than I had ever seen him that entire morning. His mother shed many tears, but they were mingled with the words, “I love you so much. Be at peace. I don’t want you to hurt anymore. I will miss you so much,” as she kissed his hands and face and held him tight. A few hospital staffers came to visit and offer what comfort they could. K and his mother had spent a lot of time in the cardiothoracic intensive care unit, and the nurses and physicians came to share their love for K and his mother.

After a while, the family was ready to leave. They’d said their goodbyes. When K’s mother turned to me, I held her tight again. Words crowded into my mind … that he was better off, that she’d been wise, etc etc. The tears welled up in my eyes. I was not crying for K, I cried for his mother … her bravery and goodness and pain. I gave her the most comforting words I could offer. “He knew how much you loved him. You gave him the best gift. The very best gift.”