By Tammy Ruiz Ziegler
At the beginning of my time in perinatal palliative care, I was introduced to a couple whose son became my first patient. “Does he have a name?” I asked.
They looked knowingly at each other before answering, “Paul.” They later told me that no professional had asked the baby’s name since he had received his grave diagnosis.
I encouraged Paul’s parents to bring their kids to the hospital so they could share the baby’s short and precious life. He was born alive near term, suffering from complex congenital anomalies which caused him to die within an hour. It happened in the middle of the night, and his five siblings, ages 2 to 15, arrived later. But siblings holding a baby who just died is not at all foreign in the world of perinatal palliative care. Each child held him, and I took their picture.
They loved the photos so much, I had to print five copies of their favorite and write each sibling’s name on it. They loved, they grieved, they mourned, they survived and later they thrived. They are adults now, and their parents later opened a home for women in crisis and care for moms and babies. And they taught me important things about helping siblings on a grief journey like this one.
In the subsequent 14 years, I have cared for about 70 families who were on a palliative care path. My previous experience as a nurse in pediatric ICU, neonatal ICU, and adult care including hospice, plus CPE training, led me to my current work as a perinatal bereavement coordinator, caring for women and families experiencing miscarriage, stillbirth, and neonatal death.
When I first speak with a mother, one of their first questions is, “Will this traumatize my other children?” The answer is no, and as their chaplain, you can help ensure that this is true.
Very often at my first meeting, the parents have not yet told their other children that the unborn baby is sick and not expected to survive. They often express a deep fear and sorrow that the death of the baby will create an unhealable grief and despair in their children and a confusion about God. It may be the first time these parents have known ahead of time that their children will grieve, and it often sparks a sense of failure and inadequacy. They expected to teach their child about death through pets or elderly relatives, not their child’s baby sibling.
I start with creating a safe place where I ask them what they are thinking and feeling. I remind them that children are very concrete and do better with the word “death” than metaphors that will confuse them. I especially caution against the word “loss,” because children are terrified of being lost and it sounds like their sibling was absentmindedly misplaced. I share that children often become scared for the mother’s well-being and will need reassurance (if it is true) that Mom is not in danger. I remind parents that no matter how the conversation goes, at some point the answer is “we don’t know,” and there is no shame in that. I encourage them to be honest so that the kids understand the sadness that has overtaken their parents. “Every day you pour love into your children,” I say. “Please don’t deprive them of a chance to pour some back towards you.”
I worked with a mother who was just terrified that her two- and four-year-old sons would suffer greatly when their sister, Robin, died. The mom later told me the most helpful thing I said was that her sons would know how much they are loved by how she and her husband bore witness to their love for Robin – that if they had been the sick one, this is how they would have been cared for. Her sons met their sister in the recovery room after a C-section and shared some precious moments. Years later, when the younger son was 13, he wrote in a school paper how moving it was, how precious his sister’s life was, and how he respects and appreciates his parents for how they relied on their faith to guide them through such a hard experience.
When children are not included and can tell that something significant is happening, they may feel disrespected and disenfranchised in their own families. However, one recent family chose not tell the children until the birth — but on that day they did so with honesty and clarity, and their children did fine. That reminded me that parents know their children better than I do, and I have come to trust parents.
It has become standard in most hospitals to make mementos of babies who die, and sometimes siblings assist me. A two-year-old can knead modeling compound to make a foot impression and tell me years later that they remember it. I have been known to buy stickers of the siblings’ favorite things that they can stick on the casket, because in their world, putting stickers on something means it is yours. (Father Riley never knew the frog stickers were my idea.)
Infant death is very hard to witness. It is fine to cry and to feel deep compassion. Along with tender compassion, though, I treat parents and siblings as intelligent and capable people who will survive this profound difficulty. I believe they sense my unspoken faith in them, and it helps. My city is small, and I run into these families all the time. There is a certain sweet smile I get from the kids who I met in the course of walking them through the death of their baby sibling. I know they appreciate that they were treated with deference and respect, even if they were very little. I hope you get those smiles one day.
Tammy Ruiz Ziegler, RN, is a perinatal bereavement coordinator at a hospital in Virginia.