My First Hospice Patient Was a 7-Day-Old Baby
Her presence helped me with my own mother’s passing.
(This story was adapted from an earlier version I wrote many years ago.)
At one week old, her life was already halfway over.
She never said a word to me, but of all the hospice patients I’ve had the honor of meeting in my 10 years as a volunteer, she stands out the most.
If you’re fortunate enough to have never had experience with hospice care, please savor your blessings. For anyone who does not know, hospice is care provided to people at the end of their lives. Hospice caregivers believe that everyone deserves dignity and respect as they go through the end of their lives, and we try our best to fulfill that mission.
My First Day in Hospice Care
I began my first day in hospice by shadowing another volunteer. The volunteer, a petite, perky woman with short hair who doled out homemade cookies, had years of experience in hospice and welcomed me to her shift.
The hospice center resembled a hospital wing, with white tiled floors and bright lights, but without the constant beeping and blinking of machines that tracked vital signs.
We walked from room to room, checked in on patients to see if they wanted company. Most of the patients were elderly and either unresponsive or sleeping. Some had TVs rambling in the background and seemed completely unaware or apathetic about what was showing on the screen.
We passed a dim room on our walk. I glanced in and saw a bassinet with a pink shade and white wicker basket. I figured it was for a baby of a visiting family member. My fellow volunteer looked in the hospice room, too, and walked up to the bassinet. I followed her. I peeked in and saw a tiny, peach-skinned baby, with a breathing tube trailing from her nose that looked like it was made for a doll. It took me a few seconds to register the inconceivable — the baby was the patient!
I lost it. I simply lost it. Tears surged from me with no regard for composure.
Intensive days of hospice training could not prepare me to see a baby hospice patient.
Training prepared me for scenarios in which a dying person might speak in metaphors, such as worrying about missing a train that was coming. We discussed common occurrences as people get closer to the end of their lives, like patients speaking to long-deceased relatives.
But never in our training did anyone mention the possibility of encountering a baby who was dying.
I gasped and sobbed while the attending nurse and the volunteer hugged me. Once I regained control, the irony struck me — I entered hospice to be with people at the end of their lives, but here this beautiful baby girl was just beginning hers.
The baby was born with a terminal heart condition and would live out her remaining days on earth for one more week in hospice. “Do you want to hold her?” the volunteer asked me. I nodded and held out my arms. I remember the baby’s calm face, her itty bitty nose, her blinking eyes looking up in relaxation, her soft forehead. Her fingertips had a light blue tint because of the sub-par circulation in her tiny body.
She was not like most newborns. She didn’t have much baby fat or sleep for hours on end. She did not scream for food every couple of hours. She just lied there with her lips pursed instinctively like she was going to suckle on her mommy’s breast. Her eyebrows lifted up every so often as if she was straining to look at something above her. She opened her eyes, then closed them. Off. And on. Off. Then on.
If peace, humility, and gratitude graced Earth in human form, that baby would be it.
No Expectations, No Entitlement
This contented baby didn’t write any books or stories. She did not invent anything that would benefit humankind. She had no judgment, no expectations, no demands. She didn’t share any funny memories, carry a conversation with me, laugh or joke with me.
We did not need conversation. In a way, we already knew each other. We connected simply by being in each others’ presence. It reminded me of something a chaplain had said during our hospice training:
“We are human beings, not human doings.”
I sat in the unlit room and held that baby girl, I can’t even remember for how long. Time did not matter at that moment. Pain, suffering, inequality, none of that mattered at that moment. All that mattered was the tranquility between us, our co-existence.
In that placid place, I saw this infant as a link between life and death. Life and death seem dichotomous, like the north and south rim of The Grand Canyon. But seeing a baby near death closes that gap.
There is no span of years between a baby’s birth and a baby’s death, no vast bridge rich with history. It was as if this little child could reach out her hand and touch the place she came from, because she had just arrived, and was just about to leave. She was like an angel stopping in to say “hi” to whoever had the privilege of meeting her.
At the time I visited this child, I had no children of my own, yet she tugged on my maternal cord. I wanted to hold her, to love her, to nurture her.
The volunteer coordinator came in to check on me. The coordinator looked me in the eye and warned me, “You know, she could die in your arms.”
I did not want the baby to die in my arms. Not because of parental instincts to protect the baby, but because I felt that if the baby passed away with me, it would be dishonorable to her parents. I felt I’d be taking something precious from her family who carried her for months.
I knew because I had recent first-hand experience with watching a loved one die.
Pulling the Plug on a Loved One
My mom had been on a ventilator in the ICU for about two weeks after years of declining health spurred on by immunosuppressant medications. She took the medications to keep her body from rejecting the donated kidney she received 9 years prior at the age of 44 after her end-stage renal failure diagnosis.
One of my mom’s doctors told us something to the effect of, “Most people who stay in ICU for weeks don’t leave ICU alive.” My mom’s health nosedived, and when she began to hemorrhage, we had no options left to extend her life. The ventilator would not sustain her life indefinitely.
My mom was completely unresponsive and unable to communicate her wishes or her needs. Backed into a dreadful corner, my sister and I made the gut-wrenching decision to remove her from life support.
When the medical staff unplugged my mom’s ventilator, we stood there and waited, thinking she was going to die within minutes. Less than one year earlier, I had watched a friend in a hospital room take his final breaths minutes after his breathing tube was unplugged.
I gawked at my mom’s monitor. I watched the blinking numbers — heart rate 50 bpm. Blood pressure 80/60. Temperature 99 degrees Fahrenheit. Oxygen saturation 80%. I expected the numbers on the screen to plummet. But they didn’t. They continued, inching along like the tortoise approaching the finish line past the hare.
Minutes passed, then hours. Eventually, I had to leave my mom’s room to eat, sleep, use the bathroom. Despite my desire to collapse, I had to go through the motions of a living human being.
More than 35 hours passed, and my mom’s heart kept on beating with no sign of slowing down. I spent most of the hours in her room. But around 10:30 p.m., the night of September 4, 2005, I sat in the waiting room with my husband and a couple of our family friends.
I needed a break from the duties of making life and death decisions. I was 28 years old at the time and doing my best to survive. I could focus on very little, so to give my mind respite, I did a jigsaw puzzle.
I placed a piece into the puzzle when something, I don’t know what, tugged at my gut. I knew I had to go to my mom’s room at that moment.
I entered my mom’s ICU room and saw my sister standing over her. Something right then pierced my wall of stoicism I had forged to get through the previous week of being a medical power of attorney and updating family members with awful news.
Finally, I let go. I broke down and cried. I bent down on my knees, touched my mom’s arm with my gloved hand and begged her not to go, even though I knew it was time.
My mom’s eyes remained closed. Her breaths stayed shallow. But they continued. I did not realize until that moment how much I needed to express to my mom how deeply I loved her and needed her, though I know she already knew.
As the tears fell, something in the air changed. For whatever reason, I no longer cared what the monitors displaying my mom’s vital signs said— I just knew she was dying at that moment.
It is very difficult to explain, but I could feel her life leaving, as if she was floating away. I did not need to see her heart rate on a screen anymore. I already knew it was approaching its final stop.
Gradually, my mom’s breaths came to a halt. She died within 10 minutes surrounded by my sister, my father, my husband, and me.
The bond between my mom and me remained intact even as she was leaving. The instinctual knowing between us, the way we understood each other without words, proved ever-present even in her final breaths. I dreaded that moment my whole life, yet I am forever grateful that I was there.
Did this newborn girl know on a soul level that I had intimate experience with being present at a loved one’s passing? Did she understand why I did not feel comfortable being the one to witness her exit without her parents? Is it all wishful thinking on my part? Guess I’ll never know.
Gifts from the Dying
It never gets easier to witness declining health and suffering. It never gets easier to see human beings’ bodies begin to fail.
With the baby, however, I saw no signs of decline. Time could not touch the baby the way it ravages most of us. Illness and age did not blotch the baby’s skin; it remained unmarred, still supple and thin after recently exiting her mother’s womb.
The baby’s eyes were not glazed with the non-look I often saw in people who were about to pass away. Her eyes sparkled, innocent and unassuming.
The baby bore no childhood or surgical scars. She would never know the shock and piercing pain of a skinned knee. She would never endure the trauma of a broken bone from a fall at the playground. She would never experience the ache of a crushed heart or rejection, never battle self-esteem issues.
She did not struggle to breathe or to exist. She simply…..was. There. And that was all that mattered.
The baby mattered, her short life mattered, simply because she existed. A long life would forever elude this child. A career, a family of her own would forever elude this child. Accomplishments and accolades would forever elude this child.
But they are not what made her significant, nor are they what make us significant.
The baby’s existence made her significant. The baby’s existence left a permanent imprint on my life. My great honor of meeting her, of having her as my first hospice patient ever, and experiencing the serenity between us is what made her important to me, and I hope to anyone else who now knows about her.
I don’t know whether there is such thing as existence after death. I don’t know whether or not we have souls and connect on a transcendent level if we allow ourselves that possibility.
But I do know that even in dying, even in approaching finality, every moment matters. No matter how fleeting, no matter whether the memory stays with us like a tattoo or fades like the flight of a butterfly, each moment is precious.
Many of the hospice patients I saw never laid eyes on me. They never acknowledged my presence. But gratitude and acknowledgment were never the point.
Though I no longer volunteer for hospice, I still believe in offering peace and comfort to people in their final moments just by being present with them. I believe in offering people a reminder of the joy of shared existence.
That dear baby, however, is the one who gave those gifts to me.
