The Tiniest Goodbye
I have said so often to so many parents of adult children “It’s not the right order in life to outlive your child.” Since taking on an occasional pediatric hospice case, this has never been more true. There never is an easy time to lose a child, but it’s especially tragic and poignant to face the death of a minor child. I had been caring for an older pediatric patient before receiving a call from our amazing pediatric palliative care team based out of Portland, planning for the potential admission of a very tiny patient.
In hospice care, a bare fraction of patients cared for are pediatric. However, life threatening diseases and conditions don’t always wait for adulthood, and families are faced with devastating diagnoses and the decisions that come with such conditions. Anxious parents and family members do all they can to find answers and treatments to fix what is wrong with their child. Often, a myriad of tests, consultants, and specialists can yield answers, but not always a fix. Treatments may be straight forward, but it can feel like an unending series of experiments, in the desperate hope for more time until a permanent lifesaving measure can be discovered. It’s not much different than what goes on in adult medicine, but there is something about facing the end of life with someone so young that leads to even more urgency for answers by loved ones. We now have the internet at our fingertips, the first place many of us go to find the beginnings of understanding about a medical diagnosis. “Dr. Google” is not always accurate, and often is anxiety provoking, but as much as we coach people to talk with their medical team first, I do not blame one person for trying to find answers to ask about. Especially in the middle of the night, when it’s dark, quiet, and yet restful sleep is evasive, as it’s so hard to quiet our brains when stressed.
Occasionally, expectant parents hear the worst news during pregnancy checkups. Hopes and dreams of a new baby are dashed with the words “something is wrong,” followed by uncertainty and testing, testing, and more testing. Perinatal support through hospice and palliative care is a growing field, as families who choose to continue pregnancy with a baby who may die shortly before, during or soon after birth need compassionate and dignified care and support through the unimaginable loss of a newborn. More programs are finding ways to support these families across the country, but perinatal hospice is not a place. It’s a way of caring and honoring the family’s pregnancy and birth plans along with care of the baby, for however long he or she lives. While our hospice program cares for mostly adult patients, our newly retired, long-time medical director is also a family practice physician who has always been willing to have our program take on the rare pediatric patient and family. It matches the continuum of care seen in family medicine practices across the country. I’m not a pediatric nurse but am willing to be a temporary one when needed.
Just a few days later, I received the message that baby had decided not to wait for the planned arrival. Mom was in labor at the local hospital, so I quickly cleared my weekend schedule. As with any life-threatening diagnosis, there was no way to predict how long baby would survive, so we went hour by hour waiting for the delivery. For a baby weighing less than four pounds, the wee one was clearly in no hurry to arrive. We were preparing for them to possibly make it home, but I didn’t receive the call from labor and delivery until Sunday, thirty six hours after the first heads-up call. The fourth-floor staff have had to deal with tragic fetal demise cases on occasion, but they usually participate in happy discharges home with their new family additions. The uncertainty of this case was something they had no experience dealing with. Who would know how to discharge a baby home with hospice? It was a role new to all of us involved.
With my arms loaded with supplies given to me by the nurses, including tiny feeding tubes in case I needed to replace the one currently in place, and juggling the lock box designed to keep the hospice medications safe from young siblings in the home, I made my way to the hospital pharmacy. As I waited to sign for them, my phone rang and I recognized the hospital extension from upstairs. Just as they were packing to leave, baby started having symptoms and no one was sure they would make it home, so everything was on hold. I returned home to wait. Five hours later, I got the call they were bundling up and making the trip home. I told the OB physician who called to let them know I would meet them.
My main task when I arrived was prefilling syringes with just the tiniest of doses of medication needed for any symptoms. They had practiced with the OB nurse to give a tiny amount of formula through the tube, the same way any medications would be given. Before I left them for the night, I made sure they knew how to use the 24 hour number and that they understood the directions for the medications. They were settled, with a lot of family around them in support.
I visited two more days, assisting the social worker in getting a cast made of an incredibly tiny foot, joking with everyone it was a skill set I missed out in nursing school as I mixed and mixed the formula per directions. Everyone had many opportunities to hold this special baby, shedding tears and sharing smiles. During this time, young siblings, parents, and grandparents all picked out colors of clay to make imprints of tiny hands and feet as a remembrance. This was a beautiful family, coping with grace and faith and it was easy to stay present for them. We all marveled at baby spending hours taking only one or two breaths in a minute (whereas normal newborns breathe at 30-60 per minute).
There wasn’t much for me to do, other then check in and give support, filling medication syringes as needed. We all knew what was coming, we just didn’t know when. Mom had wondered how much baby weighed on that second day, so I took out the scale I use to weigh the puppies. It was clear baby wasn’t going to tolerate being put on a scale, so we skipped that. Numbers (weight, oxygen saturations, etc.) only increase anxiety when there isn’t a way to fix it, so it was for the best. I was struck by two numbers though. My current caseload ranged in age from one day to a 104 years. A reminder death does not discriminate.
I woke up on day three to an email from our on-call nurse, who attended baby’s death. She didn’t want to be intrusive, so I needed to visit later that afternoon to destroy the medications and pick up the lock box. I was told the touching story of those peaceful last breaths shared with family. A good death, for what it was. I did ask about how the mold of baby’s foot turned out. Despite my novice skills at such a task, it turned out well, yet another tangible memory of a life so loved, yet so brief.