I used to dread going to wakes and funerals. I would get especially nervous as I approached the family. What should I say, I'd wonder. What will bring this family comfort? I have heard it said that there are no right or wrong things to say to a family experiencing a loss. I now know that this isn't so.
A little more than three years ago our son Casey was given a prenatal diagnosis of congenital diaphragmatic hernia. During the month after his birth he had three major operations and many other medical procedures. We weren't always sure we should continue the interventions. When we were told that there was no longer any hope for Casey, my husband and I took him off life support and held him as he died.
Some of the responses to Casey's death were so disconnected from our experience that they made us laugh:
"At least you're still young and can have more."
"Be happy; your child was still a baby. I lost mine when he was 33."
"Sorry, I lost a few myself."
"Things can only get better."
"You can always adopt."
"Do you think you'll try again?"
There was one truly hurtful one I never showed my husband: "He was a baby that was not meant to be."
But many responses were more sensitive. We received an outpouring of support, much of it from my colleagues. Nurses who'd cared for Casey wrote how lucky he'd been to have us for parents. How we were able to love him and make decisions for him under the most difficult circumstances. A surgeon wrote that he had never seen such loving parents and that it was with great sadness that he had watched our son die. A respiratory therapist wrote that Casey had amazing blue eyes. Everyone has doubts and guilt after the loss of a baby; the most soothing comments were the ones affirming that we were good parents and had made the right choices in trying to give our son life.
At times of sadness I reread the cards and e-mails from nurses and remember the time we had with Casey. Nurses were often the ones who made that happen. Casey was transferred to a children's hospital after his birth. Even though I'd known this would happen, it was hard living apart from him. The nurses sent me pictures so I could put them on my nightstand. They called with regular updates, both good and not so good.
These small gestures helped me feel that I was a part of his life even when I couldn't be at his side. He never required a lot of sedation and was content to look around. During one of the infrequent occasions when he was unhappy, his nurse asked if I wanted to sing to him, since he always responded to my voice. That moment made me feel like Casey's mother. Two days before he died, I was feeling sad, missing the simple things that mothers do for their newborns. Casey's nurse sensed this and suggested that he would benefit, at least emotionally, from having me bathe him. She stayed at my side as I went through the ritual of caring for him as if he were a healthy boy. It was enormously comforting to have that time.
Nurses bear an awesome responsibility in the care they provide to patients and families and should know that their choice of words and actions may be remembered for a lifetime. At times I feel at peace and at other times my grief intensifies. I now feel a connection to parents that I never expected. When an infant passes away I send the family a card. Each card is difficult for me to write; I share some of myself and affirm how painful the death of an infant is. In a recent card I wrote to a young single mother, "You were right when you said it was hard to see your baby on a ventilator. I thought the same when I saw my son in the ICU-to see a little baby on life support is the saddest thing in the world."
She responded with a long letter that read, in part, "I never want the memory of her to be forgotten. I'm due to go buy storage bins to place all of her clothes, toys, bassinet [horizontal ellipsis] in to store them away for when another baby comes. It's hard to look over at the empty bassinet when it should have a beautiful baby girl lying inside of it."
And so our correspondence continues. I don't think I've grown stronger, but I am now better at understanding grief. Sharing my personal experience and knowledge with nurses and families is just one of the gifts that I have received from Casey, one that I will pass on to others.