As I write this I am sad, as I am sitting in front of a sick baby. His parents block my field of vision. But even if they were not sitting right there, my eyes would not be focused on him. Watching him does not tell me what I need to know. I watch the ICU monitor that is mounted about 4 feet above the head of his open crib. Green numbers tell me that his heart is beating. Red numbers tell me that he has a blood pressure. Blue numbers tell me his pulse oximeter reading. White numbers tell me his respiratory rate. Though these numbers look fine for the moment, I know this baby is dying. His parents know he is dying. The cardiac surgeon, intensive care physician, and nurses all know he is dying.
I turn to look at his parents. His mother is sobbing quietly. As she cries, she runs the fingers of her right hand nervously through her husband's hair near the nape of his neck. This small act seems to calm her a little. I flinch as I watch this, as I too seek this gesture with my husband when I am upset. For a brief moment, I find myself within the circle of her pain, and I can feel it, white-hot.
I check the monitors. Green, red, blue, white lights tell me he is still alive.
I feel sad for this baby. He is only 20 days old. He has already been through surgeries, ECMO, and dialysis. He has had such a little life to have experienced so many big events.
I feel sad for the parents of this baby. Watching them over the last few weeks, I have grown fond of them, even without really knowing them. Their kind love and unwavering support toward each other as well as their unfaltering love of their first child has touched me. I have seen the looks they have exchanged across the open crib, glances they never knew I saw. Locked eyes that conveyed a thousand emotions. I am sad for the pain these people are enduring and do not deserve.
This baby was born full term to parents who were told they could not have children. At birth he was blue. Oxygen did not improve his color, so the staff suspected he had transposition of the great arteries connected to his heart. They were right. Prostaglandin was started to keep the only communication between his systemic and pulmonary circulations open. I met him briefly that morning when he was transferred from a local hospital to the pediatric intensive care unit where I was the resident coming off call.
Now it is 3 weeks later. He is status post atrial septostomy. He is status post an arterial switch procedure. He is status post 3 days of ECMO. He is status post chest closure—and reopening. He is on dialysis. He is growing ever more acidotic.
Truthfully, I don't know this family well. I am only a cross-covering resident here in the PICU. I spend every fourth night here, but I miss out on the daytime drama. My day job is another rotation in which I work in various clinics. I don't feel as connected to the patients in the PICU. At times I feel almost like an intruder.
Green, blue, red, white all okay. There must be something more I can do here. I ask the parents if there is anything I can do for them. Water, the mother would like some water. I can do that.
I feel like I know this family, without really knowing them at all. In catching them in these little caring, intimate gestures, I feel like I have been privy to their pain and their experience. I have slept sitting up in a chair at their baby's bedside. And yet I have not had extensive conversations with them. Each time the parents were called to come to the unit in the middle of the night, it meant that things were not going well. Therefore, when they arrived late at night the PICU attending and cardiac surgeon were also present, ready to explain the situation. My role seemed negligible at those times.
The couple in front of me briefly embraces and kisses. I feel embarrassed seeing this as I glance up to check the baby's monitor once again. What are they thinking at this point? I wonder. Do they still have hope?
There were days that I walked by this couple, during my day job, as they sat in the family lounge. They huddled close together as though they were cold, despite the fact that it is August. We occasionally exchanged glances. They always seemed to be trying to register who I was. Sensing the lack of absolute recognition, I would keep walking. Even in the brief glance that I steal at them, I sense exhaustion, confusion, and pain.
I recheck the monitors and decide to approach the parents again. How are you doing? Do you have any questions? No, they say. We are okay. Thank you. It is then that I realize I have missed my window of opportunity to connect with this family. They have been here 3 weeks, their foundation with staff is set. In these last hours or days of the baby's life, they do not desire any new connections.
As the blood gases worsen and the acidosis increases, I fiddle with the vent settings and order more bicarb. A high INR leads me to order more fresh-frozen plasma.
Now I regret each time I walked by the couple and did not offer them a greeting or ask them how they were doing. I regret not being involved. I regret that I did not make a point of talking to them on those nights when things weren't going well, despite the presence of my superiors. I may not have years of experience to offer, or extensive knowledge of cardiothoracic surgery, or even information on the intricacies of dialysis. I could not have offered many real answers. But I regret offering nothing.
I remember that when the baby was returned from surgery on ECMO, more than 2 weeks ago, I was told that he would not likely survive. I think I registered that in my mind and began to pull away from him. I allowed myself to stay on the periphery of his care. I allowed myself to be simply a cross-covering resident. I allowed myself to withdraw emotionally from the family. I regret that now.
I hear a new sound over the din of the PICU. It is soft, melodic. I look up and realize that the mother is singing softly to her baby. I cannot make out the tune, but the melody is soothing.
As I dwell on these thoughts I realize that there is really no such thing as being just a cross-covering resident. I may be the first person a family meets on admission to the PICU. I may be the last resident they work with if their child dies. My responsibility is to be involved. Families deserve better than to have a child die under the auspices of a stranger.
I regret all of this now as I sit at the bedside of a dying baby. It is unlikely that my involvement would have made a huge difference in the baby's outcome or how the family deals with it. But it would have made a difference to me. I would have known that I had done my job, which is to do all that I can. Now I can only live on with this lesson and this regret. And keep watching the monitor.
Country-Specific Mortality and Growth Failure in Infancy and Yound Children and Association With Material Stature
Use interactive graphics and maps to view and sort country-specific infant and early dhildhood mortality and growth failure data and their association with maternal
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