By Jim Manzardo
Over the past decade or so, I have learned to take a both/and world view, seeing mostly gray, and consequently I become more easily frustrated with black-and-white thinking in others.
But sometimes I still catch myself doing the same thing. I’m thinking of four similar cases in the PICU, in which parents’ theological perspectives stirred some angst in me.
In all of these cases, the mothers had a very similar theology, and I had my own very different thoughts about where God was in these situations.
All four of these moms were forced to confront the most incredibly painful experience of any parent, the possible death of their child – two from drowning, one from a motor vehicle accident, and one from an inoperable brain tumor. These moms were abruptly thrust into the complex world of the PICU, with its own culture and language, and they were forced to make the most difficult decisions of their lives.
All four children were intubated. In the first three cases, neurologists told the parents that it was highly unlikely their child would eat, drink, speak, walk, see, or have awareness of their surroundings. In the last case, the mom was told unequivocally that the tumor’s growth would eventually stop her child’s heart.
But of course, highly unlikely communicates just enough uncertainty, the fact that medicine is not an exact science, and leaves open the door for possibility – a door some parents enter by choosing a tracheostomy for their child. In the cases of the MVA and brain tumor, the moms requested a tracheostomy, against the initial recommendations of the medical team. For these moms, there was a window of time to experience all the feelings and crises and to consider their options. For the two children who had nearly drowned, after that window, both were extubated and did not need a tracheostomy.
These mothers were from varying levels of education (one was a surgeon). Two were African Americans, one Haitian and one Mexican. They all had at least one other living child.
All of these moms spoke of God as their ultimate source of hope, capable of not simply keeping their child alive, but of reversing the clinical, or physical, realities of their child. That is, making their child walk, talk, eat, drink, and be aware of their surroundings again. In two cases, their faith put them on the defensive with the medical team, seeing them sometimes as working against them, and even, in one case, being of the devil.
They all said that the only option their faith gave them was keeping their child alive. To choose otherwise was quite simply to fail to have faith, to fail to believe in the power of God to heal. Shifting from aggressive to palliative care, to them, was tantamount to taking their child’s life.
Their expression of their feelings varied. It seemed that the sharing of tears, and of admitting fear and sadness, was seen by them to be a weakness, an indication of a lack of faith in their God to heal. And I confess that in my career on many occasions, I probably “pushed” the other person to share more deeply than they wanted to, leaving them feeling quite vulnerable. In two of these cases, I wonder if that contributed to the moms shutting me out.
I listened to all these moms and spent varied amounts of time with each of them. In one case, I had only one visit. The boy had been at another facility for a while, and after the accident, the mother had been told her son would die in 48 hours. She told me with confidence that she had faith in God, that God would heal her son and the fact that he was still with them was a confirmation of her faith and answer to the prayers.
As with the other three children, her son lay in bed, eyes open but not tracking, not moving his body voluntarily, with a G-tube for feeds. This is relatively common in the PICU, and I encourage parents and staff to communicate with the spirit of the child locked within the body. I also try to understand how parents communicate with their children. When I asked the mother how she knew what her son needed, she looked at him and indicated that in that moment he was bothered by our talking. When I asked how she knew, she said because his eyes were open. That is how mom knows something is bothering him. Otherwise, his eyes are usually closed. I was speechless and felt heartbroken. When I asked how I could help support her, she asked for prayer. When I asked for what she would like me to pray, her eyes welled with tears, as she said, “that God awaken and heal him.”
What are these situations trying to teach me? What is the change to which I am being invited?
Humility, always. So much of life is out of my control, and it is mostly mystery. My heart broke for these moms, of course, but I also found myself thinking at times, “God is not going to physically heal your son. No, the doctors are not gods, but your God has put them in your path, they have good intentions, a ton of experience and knowledge, AND your child is only here now because of their interventions. It is time to let your child go, be in peace.”
Of course, I never say this. But I know it is what many who work in the PICU are thinking. All of our knowledge and experience shapes our response. We know, but still forget, that it is this parent’s first time, and it is their child, and they are the ones who must go through this hell on earth. I know that each person is unique and brings with them their own histories, cultures, and internal and external resources. The two Black women might have been carrying, consciously or unconsciously, an underlying mistrust of the medical system. The Mexican and Haitian mothers’ language barrier may have contributed to their understanding of their situations.
On the one hand, I understand how incredibly difficult it is to be in these parents’ shoes. I know from other parents that there is no greater pain than the death of one’s own child. On the other hand, I experience much distress with these parents’ theology. I know that their faith gives them a feeling of control in an otherwise totally out-of-control situation. It seems, though, that their faith has become an obstacle. My subjective, judgmental view is that these moms are actually showing a lack of faith in their God, and impeding their God from allowing the natural course of events to unfold.
I know that modern medicine puts these parents in these situations and also then becomes an obstacle to the natural dying process. In some ways, I see these four cases as a battle of God, or parents’ image of and belief about God, vs. modern medicine. But it does not have to be a battle. In fact, many parents see God working through modern medicine and its practitioners and either from the start or over time feel themselves working in partnership with the medical team.
I also know that these encounters, and the thousands of others I have had in my career, have greatly influenced my own theological perspective. So much is out of our control here every day: the accidents, the illnesses, their outcomes, technology’s continued development, parents’ responses, including their theological perspective, and their varied ability to make very difficult decisions. In this very out-of-control space, I/we daily have to surrender, to let go, and accept what we cannot change. The reality is I know and have control over so little, including who, how and where God is.
Jim Manzardo, BCC, is clinical care coordinator chaplain at Ann & Robert H. Lurie Children’s Hospital in Chicago.