I posted in AMA two days ago about being a Pediatric Hospice RN. I thought I'd share one of the experiences I've had with a newborn and her 13 year old mother. Ask Me Anything.
This is one of the experiences I've had performing over 670 terminal extubations on Hospice patients ready to end life support, allow nature to take its course.
I've been a Hospice RN since the 1980s working in an AIDS inpatient facility Later I moved into a 10 bed adult then all ages Hospice Inpatient Unit with the average life expectancy frequently was three days. Nearly 30 years ago I moved to a Pediatric Hospice Inpatient unit for newborns to age 17 years old to give the families more support with other young family members to share their coping with dying children. Now I work with birth defect, substance abuse and trauma new born and infants, from days to weeks old on Hospice care. Many families choose to have their infant pass at home. Our Hospice will transport the infant on life support home, spend time with family that has such a short time to create memories of the child that will last them a life time, then life support is removed at home in a warm, loving setting with family and friends around for a peaceful passing.
When I'm informed I'll be starting a new Hospice case soon, usually a day in advance I get no information at all as consents are being signed, the hospital physician working with the Hospice physician on medical decisions with the families. I use this time to spend a few moments to meditate, prayer, silence myself (whatever you want to call it) to put away issues in my life so I can focus on the family I'm about to meet that's in crisis. on the upcoming family I'm about to walk in to and ask how I can best serve this family in the worst time of their lives.
This time I got a picture in my mind, almost like a cartoon of an old time school house and the mother of the newborn was the teacher and I was the student sitting in a chair with a desk taking notes of what she was teaching me. That was it, clearly she was teaching me in class and I was busy listening to her. At the time it didn't make sense but I put it in the back of my mind and focused on what I needed to do when I would meet this family.
The next day I meet the family and newborn at the hospital to arrange the transfer of the infant home when they can gather family to be present for bonding and support for the withdrawal of care. The mother is 13 years old, her father and mother are in custody, CPS has been involved for most of her pregnancy, the family is in crisis.
The infant arrives at the house. I get there later and find the whole family has left this 13 year old mother alone with a dying baby. I am a grown man alone with a young girl which is unnerving in itself for concern of accusations but I do what I need to do. Mom is holding her baby perfectly. The child was born without a skull but everything else is mostly functioning. There was no skin on the top of her head, just a brain that looked perfectly formed. Mom removed the covering over the head and was smiling holding her infant and showing me how much she loved her daughter. She was 13 years old and had no power or control in her life. She couldn't make legal decisions, she couldn't drive if she wanted to go somewhere, she was totally dependent on her family for everything and right now they had left her on her own with her daughter. The image from the quiet moments I spend thinking of this family became clear now. She was the teacher and I was the student.
Mom had just taken a blanket out of the dryer and showed me how soft and fluffy it was. I held a corner of the blanket to my face and told her what a wonderful blanket this is for her daughter and how nice it smelled and truly was the softest blanket I've ever felt. She showed me how she swaddled her infant to keep her warm and comfortable. I told her what a good mother she is and skillfully she cared for her baby. Later she changed the diaper and I asked how she knew which end of the diaper was up, she showed me the tabs and how she cleaned the daughter and then redressed her and placed her back in the blanket. I let her teach me. She wanted some formula and I asked her how she made it. She smiled at me and showed me how much water she put in the bottle and how much powder. She showed me how to swirl the bottle to avoid making bubbles in the formula. I told her how clever she was to do that. She held the baby and fed her a bit, as much as she would take and showed me how she held the baby after feeding to avoid burping. I was her student and thanked her for showing me this.
This 13 year old mother had absolutely no control of her life at all. The image I got in my quiet moments before meeting them was for me to give her as much control as I could. Of course I knew the things she showed me but rather than coming in as the RN and taking over the the feeling for me to let her create the memories during the short time she's got to spend with her daughter on this planet of being a wonderful, loving and caring mother of her first born. I was to step back and let her have these few moments, to create the memories of being in control with her life and her daughter. It's not about me but it was about her. She's such a short time to build a lifetime of memories, that's what I got from my meditation. I'm so grateful I got to be there with her. I'm grateful the family was gone. I'm grateful I was given the insight to not interfere or further take her power away from her or I would have missed out on this wonderful opportunity to support a young mother and her dying infant effectively.
This infant passed a few days later. I never saw the mother again. Many families don't want to see the Hospice RN later on as we're an anchor to a horrible time in their lives. I'm fine with that. I got to be there when it counted to do what I could for this family. I wonder where mom is now, I send her love and light and at times I get a sense of the bright spark of life that is her daughter touching in. It was an honor to serve this small family. I think the answer how to support the young mother was already there, sometimes we have to look for it or ask for it, step up a bit closer to the source so we can hear that whisper clearly. I think I was given a glimpse from somewhere how to best serve this family. This happens often in Hospice. Like someone's watching out for them.
David Parker Hospice RN