Holy Everything in Between
A pediatric hospital chaplain reflects on waiting with—and waiting on—parents as they navigate end-of-life decisions for their child.
By Britt Luby
Names and identifying information have been changed in these stories to protect patient and family privacy.
I recently walked out of a hospital room and prayed for a devastating MRI. For a baby. And part of me felt like a wicked agent of doom as I wiped my hands with cold gel sanitizer. Because, really, what kind of person wants things like this? Who wants tangible proof that the bacterial meningitis has caused so much damage that the baby’s brain will never recover—that she will never walk or talk or know touch or love?
I want it because if the proof isn’t there—if the damage isn’t so obvious that, even with my untrained eye, I can tell that those bright white patches are wrong wrong wrong—then the suffering continues. The artificial life support machines carry on, the pricks on her heels resume, and her swollen skin starts to peel.
I want it because the miracles are few and far between and, as a pediatric hospital chaplain, miracle theology is the hardest theology for me to meet.
As their NICU chaplain, my job is to help parents see this decision as an act of love. Until then, we wait.
Redirection of care” is the phrase we use at the neonatal intensive care unit (NICU) when a family has decided that the most loving thing they can do for their baby is to let them die. It is a gut-wrenching decision made as words like meningitis, extreme prematurity, and severe hypoxic ischemic encephalopathy are thrown around. It is a decision made as hospital alarms beep and physicians call additional specialists and families weep on plastic couches.
“They are going to need you,” a doctor might tell me after assessing a new infant. She nods to the parents in the corner, mom still in a hospital gown and dad wide-eyed with fists clenched. In many cases, the medical providers know early on that redirection of care is the most likely story for a very sick baby. Usually, though, the family needs time to get there, to accept that this ending is the most peaceful one for their baby. As their NICU chaplain, my job is to help parents see this decision as an act of love. Until then, we wait.
* * *
The shortest wait was a mere hour. It caught me off guard, the speed the young parents moved in their decision. None of us were ready for their swift declaration that the breathing tube should be withdrawn. Their baby had suffered a severe HIE at birth. I know what this means now. It means his brain went without sufficient oxygen for too long. Sometimes it is an umbilical cord injury, sometimes babies get stuck, sometimes mysterious things happen and answers are hard to find. His EEG was completely flat for more than 24 hours. After the doctors shared their concerns with the family, I asked if they would like to pray. This was a physically large family—both in the number of people present and in their stature—and I remember I felt elfish in their presence. I held their hands, large and damp from wiping tears, and prayed for God to sustain us all on this hard day. I probably said something like this: The same God that was with you the moment you found out you were pregnant with your son is the same God who is with you now.
I walked out of the room feeling sick to my stomach at the senselessness of this ending, and also wondering what I would cook my children for dinner tonight, because that is how my brain works on days like this. But before I could return to my office, I was paged back to the room. “It’s happening. Right now.” The family had swiftly decided that he was already gone, this son they had longed for these last nine months, and that there was no need to wait any longer.
Extended family members stood around mom, dad, and baby as still and strong as the redwood trees that surrounded my graduate school campus. The tube was already out of his mouth, and mom was rocking him slowly in her arms. Dad stood behind the rocking chair gazing at his great loves. It did not take long for their son’s body to stop working.
His parents bathed him while his body was still warm. It was the only bath they would ever give their son. I recited lines from Jan Richardson’s Blessing the Body as they scrubbed the adhesive from the EEG probes out of his curly hair. She writes:
This blessing takes
one look at you
and all it can say is
Holy.
Holy hands.
Holy face.
Holy feet.
Holy everything
in between.
They marveled at his toes.
It is impossible to tease out where God is for this family, on this day and in this moment.
A flat EEG almost makes it easy. Not really, of course—there is nothing easy about any of this. It is so impossibly hard. But there is clarity in a flat EEG that other conditions do not provide.
Sometimes, a baby goes home for a few days before they end up in our NICU. Nora did. Nora’s mom brought her to the emergency room about a week after she was born because she had a high fever. In the emergency room, her condition deteriorated quickly. She was intubated and brought to the NICU as her shell-shocked parents walked behind her. She started having seizures, and they could not stop them. She seized for an entire evening. Then the next day, and then the next day. And it just kept happening, this status epilepticus, her body sedated as the EEG machine continued to register seizure after seizure. Lab work showed us she had contracted bacterial meningitis. It took several days for us to get her body stable enough to transfer to the MRI machine.
Staff tended to Nora as her family waited on lab results and imaging. I tended to her mom. She sat in a chair next to Nora’s bed all day and night while her husband cared for their other children at home. She talked quietly to family members on the phone and often napped under a furry white blanket. She said it was okay if I prayed for Nora, but she was not interested in a baptism because she wanted to do that in a few months with more family. Later. Once Nora recovered.
Every few days, we held a Care Conference with Nora’s mom. This is when staff from multiple disciplines caring for a patient get together to talk to families. Before the first conference, I gave Nora’s mom a small workbook with questions for her to think through before the meeting. “What are my goals for my baby?” is one example. “What do I value most?” is another. “What the hell is happening, and why can’t you fix this?” is the one I should add to the list, but haven’t.
The first Care Conference lasted two hours. The neurologist poured over Nora’s MRI results with grim detail: “This is the part of the brain that controls vision, this is the part that controls speech, this is the part that controls executive function, this is the part that controls movement.” She listed all these areas and pointed to the bright white evidence of damage.
“But she’s on antibiotics. We are clearing the infection, aren’t we?” Mom responded.
“Perhaps we can clear the infection, but this damage will remain,” clarified the neurologist.
“But brains can rewire, can’t they?” Mom asked.
“There is no healthy tissue left in her brain. I am so sorry, but I do not believe she will recover from this damage.”
“But she will survive; I know it,” said Mom.
“If she survives, she will not walk or talk. Or eat on her own. Or breathe on her own. She likely will never be able to see. She likely will not know who you are.”
We repeated this conversation every few days. In between these meetings, I checked on Nora and her mother. I talked to Nora and stroked her hair. I delivered a new blanket and a handwritten copy of a prayer to her mother. Seven days later, Nora’s body was still seizing, and the neonatologist had tears in her eyes as she repeated her concerns. As she usually did, she listed all the organ systems that were impacted by the meningitis and the subsequent brain damage. Each day, the list grew longer. “Our interventions,” the doctor explained, “They are not helping her. I think they are prolonging her suffering.”
We stared at each other, this doctor and the palliative care nurse and the neurologist and this mother and I. “Dr. Lane,” I said, my hands in tight fists. “I don’t have any medical training, but I am a mother like Nora’s mom. So, when I have to make decisions about healthcare for my kids, I look to the providers who do have training. But that is just me.” I continued, “Mom, are you curious about what Dr. Lane would do if this was her baby? You can ask her that, if you want.”
We had talked about this prior to our conference. We had talked about a way for the neonatologist to offer her honest suggestion for Nora’s care if Mom was comfortable asking her about it.
Mom looked at her hands for a moment. Then she looked at Dr. Lane. “I do want to know,” Mom said. “What would you do?”
The doctor’s voice cracked as she replied. “I would hold my baby. I would take out these tubes, this artificial life support, and I would allow my baby to die a natural death. And I would hold my baby.”
Mom’s face remained fairly flat as she absorbed this news. She was silent and holding a gold cross necklace as she thought through her response. “God will heal my baby.”
I was wrong. See, I thought this would be it—that this honesty about how sick Nora really was would be enough to stop the heel pricks and intravenous antibiotics and all of it. I wanted this mother to let her daughter die. This mother wanted a miracle.
The days started to bleed together. I have a set of tools for situations like this, for unrelenting miracle theology, but nothing ever really works. I might ask a mother, “What does healing look like to you?” or “What do you think your baby’s body is showing us today?” It is usually impossible to untangle years of theology in an acute setting. It is impossible to tease out where God is for this family, on this day and in this moment, as prosperity gospel themes echo through the worship music Mom plays in Nora’s room. The untangling usually comes later, after a child is buried, after the doubt bubbles up and what this mother once believed stops being enough. I offered Nora’s mom a non-anxious presence, sat with her for some time in Nora’s room. Told her I was so sorry this was happening.
My energy pivoted from this mother to Nora’s nurses. “It feels like I am doing things to her, not for her,” a nurse told me. It is a familiar refrain in the NICU amongst nurses. I reminded this nurse that her care for Nora was not entirely out of her control. She could keep Nora comfortable for these 12 hours, as comfortable as possible, and she could talk to her and make sure Nora felt loved and cared for during her shift. Those were tangible acts of love that she could do as an RN as we waited for Nora’s family to come to terms with what was happening to her body.
Another nurse confessed to me that she wished Nora’s heart would just stop on its own. To stop this suffering, to take the burden of decisions away from this terrified mother. I absolved her; shared that I had wished for the same.
This is how the waiting finally ended: Mom expressed that she was concerned that Nora was not breathing on her own, not at all, not even an occasional breath over the ventilator. “I am concerned about that, too, Mom,” said Dr. Lane. Later, she asked Mom to come to Nora’s bedside and watch as she turned off Nora’s ventilator for a few moments. She wanted mom to see it with her own eyes, to see how Nora’s brain was no longer telling her lungs to breathe. Nora’s chest was still.
The next day, I got the request for which I had been preparing for weeks. Mom had questions about what would happen to Nora’s body after she died. I am an expert on this subject for the NICU. I know what death looks like; I know the post-mortem rituals and the most discreet route to the morgue. I know which funeral homes have Spanish-speaking staff and which have on-sight, affordable cremation services. I am a well of terrifying knowledge that no one ever wants to access. I offered it all to Nora’s mom as gently as I could. Nora died the next afternoon, just twenty-two minutes after her breathing tube was removed. Her mother held her—for the first time since arriving in the emergency room weeks before—as she died.
Nora’s body finally stilled, the suffering finally lifted. In her mother’s arms, a miracle finally happened.
They had both slept on the hospital couch in their daughter’s room for these ten days. They had aged ten years since I first met them.
I understand that I have to break my own heart so that she doesn’t suffer anymore.” A sixteen-year-old mother said this to me this year as she decided to redirect care on her baby. Iris was born with an unusual genetic condition that was incompatible with life.
“I want her to suffer a little bit,” her father, the baby’s grandfather, had said earlier that morning at a Care Conference. The doctors were listing their concerns and suggesting that treatment was, at this point, causing unproductive suffering. But this grandfather had seen miracles before. He believed that God just needed more time to heal his granddaughter. He wanted Iris to be a fighter.
But this young mother had, over the course of ten days, seen enough fighting. Iris’ heart was failing as all her blood ran through the Aquadex Circuit. “Maybe we are able to make this decision because we are young and naive,” she and her boyfriend offered when I complimented them on their hard-earned wisdom. They had both slept on the hospital couch in their daughter’s room for these ten days. They had aged ten years since I first met them.
“You are not young and naive,” I assured them. “You are good parents, and you are loving your daughter well.”
I was with them as their daughter died. Oh, how they loved her. They kissed her over and over again and wrapped her in the baby blanket they had ordered with money saved from their after-school jobs. Her name was printed all over the soft blanket. It had cost them more than they expected, they told me, this blanket with “Iris” printed all over it. I can’t stop thinking about this blanket and what it cost them—what all of this cost them. What this costs.
* * *
In between patient visits, I try to check in with my fellow hospital chaplains. Most days, we end up together around a plastic table in the breakroom for lunch. We take turns microwaving our frozen meals and swapping stories. Sometimes, when the long wait for death becomes untenable, I will ask them for advice. Nearly every day, actually, I seek out their advice. “If they are that focused on a miracle,” Bill tells me gently, “there is nothing you can say or do to change their minds.” Bill has been a hospital chaplain for over 30 years. I tell him often that I wish he was my dad. “I’ve never changed anyone’s mind,” he offers.
Bill always manages to make me feel better. And then Steve tells a ridiculous story, and we are all laughing so hard that I snort. I finish my sparkling water, grab a few Milk Duds out of the box Steve keeps on his desk as a workplace communion offering; then, I go back to my patient’s room and wait.
I realized I did not know what I was actually praying for: for there to be a heartbeat, or for there to be no heartbeat.
The doctor is supposed to listen for an entire minute before calling time of death. Ideally, we move the family to the “Butterfly Room,” our euphemism for the palliative care suite. We remove artificial life support from the patient, then we put the patient into his or her mother’s arms and wheel her to the Butterfly Room. Family can gather there and stay as long as they want as death moves into the room with them.
Occasionally, especially if the mother is alone in this moment, I will sit with her as she holds her baby. Occasionally, a family chooses not to be present at this moment, so the bedside nurse holds the baby instead. Or I do. After some time, the doctor enters the room to make sure the patient seems comfortable. If the baby doesn’t appear to be breathing, the doctor takes her stethoscope off her neck to listen for a heartbeat.
Recently, I companioned a mother who redirected care of her son—born too early for this world at just 23 weeks—shortly after the baby arrived at our hospital. This mother was alone. As the doctor came to check for a heartbeat, I put my hand on top of this mother’s hand, still swollen from preeclampsia.
We all watched the clock.
Ten seconds and it was a little stack: a rocking chair, a mother, her baby on her chest, a mother’s hand on her baby’s back, my hand on hers.
This blessing takes
one look at you
and all it can say is
Holy.
Twenty seconds and it was layers of hospital gowns and blankets in between all this humanity and divinity.
Holy hands.
Thirty seconds and I could see this baby’s hand peeking out of a blanket, resting on his mother’s chest.
Holy face.
Forty seconds and his hand is the size of your thumbnail.
Holy feet.
Fifty seconds and I realized I did not know what I was actually praying for: for there to be a heartbeat, or for there to be no heartbeat.
Holy everything
in between.
Sixty seconds and there was none.
Britt Luby is a chaplain and writer. Her essays relate her Catholic identity with daily life, and she has been featured in publications such as America Magazine and National Catholic Reporter. She is a fellow with the Baptist Joint Committee for Religious Liberty (BJC) and committed to interfaith cooperation.
