Equipping Caregivers to Walk With Grieving Hearts
There is no one more equipped to parent a baby whether alive or not than his or her parents.
Last weekend, I addressed a group of nurses, caregivers, and doulas in Omaha, Nebraska, with the goal of equipping them with tools to provide support for families enduring pregnancy loss at any gestation through infancy as well as perinatal hospice support for families facing a life-limiting diagnosis in pregnancy. When I lost my three babies (twin daughters born still at 26.5 weeks due to twin to twin transfusion syndrome in 1996 and a newborn son carried to term after receiving the life-limiting diagnosis of Potter’s Syndrome in 1998) it was on the cusp of the time when you just met your babies briefly, said goodbye, and were expected to move on with life. The only books available at that time were written by pioneers in the movement for parents to be given an opportunity for tangible memories and time to say hello and goodbye to their babies: Sherokee Ilse (Empty Arms) and Pat Schwiebert (When Hello Means Goodbye). Those brave women paved the way to prove that mothers and families benefited from time with their babies, even after death.
I read Sherokee’s book, Empty Arms, during my time carrying our son Thomas, knowing his life would be brief. I learned that I could bathe my baby. The thought struck me as a mother. How I longed to still parent my child, even if just a little, before I never held him again. I mustered the courage to speak my request aloud. You see, a parent facing the death of her child often feels a sense of shame. What is acceptable? What am I allowed to do? Is this strange? Do people hold dead babies? Do they take pictures? We feel inhibited, as if our desires are foreign, odd, or unacceptable. But a parent is designed to do just that…to parent. It is an intrinsic need. I instinctively knew that it would be a comfort to me to mother my son, even if just for a little while. Still, it took so much courage to ask.
“After we take him off the machines, I would like to give him his bath,” I mustered, my voice small and shaky.
A well-meaning nurse replied, “Oh, no, honey. We will take care of that for you. That’s too hard for the parents.”
And, that shred of doubt was enough for me to shrink back, questioning my own ability, accepting that the professional caring for me knew better what I could handle. I never did bathe my son.
In an effort to protect and give care to a hurting parent, nurses and caregivers may try to do things for the parent that may inadvertently take away opportunities for fostering memories. Now, before anyone pounces protectively on that beautiful nurse, she is also the only reason I have a picture of my son with his eyes open, or any pictures of him at all. She thought to take pictures with a disposable camera as I soaked in the fleeting time with my son. The only pictures I have of me holding him while he was still alive were taken by that wonderful nurse. We all do the best we can when a baby dies.
The sacred honor of coming alongside parents saying hello and goodbye to their babies often falls to the nurses who do their best to juggle other patients while serving as a guide to walk with families navigating their way through the most agonizing of goodbyes.
She may be the one to tell the family the words that change their lives forever…
“I’m so sorry. There is no heartbeat.”
She may be the one to introduce the idea of meeting their baby to frightened parents, asking the hard questions about funeral homes and burials. She may perform a baptism or call the pastor or priest. She may even catch a tiny baby born too soon, entering the world silently. She will likely capture as many mementos as she can…footprints, handprints, a lock of hair if possible. She will tuck all the items into a pretty box made by volunteers. She may question herself, carrying home the images of raw grief experienced by the patients she has pledged herself to as a caregiver.
Over the course of more than a decade of serving bereaved parents, hearing thousands of stories of families and caregivers, Sufficient Grace Ministries has developed a comprehensive family-centered program to help bridge the gap, creating a sacred space for memory-making and family bonding. As spoken of in the book, Companioning at a Time of Perinatal Loss (Jane Heustis and Marcia Jenkins), we are there to take away the fear parents experience at the thought of meeting a baby who is no longer living…to take away the fear so they can embrace the time they’re given. As perinatal loss support companions or doulas, we are there to come alongside the amazing nurses to enter in with families, offering them opportunities to spend time with their babies…encouraging them as a guide…offering options and creating space for bathing, dressing, memory-making, and capturing every precious moment with trained photographers. The SGM Perinatal Loss Support Program focuses on family-centered care with a support companion or doula and a remembrance photographer. We also train hospitals and birth professionals on this ground-breaking, life-changing approach of caring for bereaved parents. Many nurses share how wonderful it is for their patients and for them to no longer face the loss of a baby alone, but to add these essential support services and resources to the experience of their patients. While there are now a myriad of perinatal loss support training programs, this training goes beyond the clinical to the heart of a grieving parent’s perspective, a concept we’ve been developing since we began offering hospital trainings in 2006.
We see how this method of care helps to alleviate many regrets parents struggle with as they grieve the loss of their child. As a parent, you may be reading this and feel the longing ache to have had this type of support when you said goodbye to your precious baby. As the creator of this program, I often feel the same way. Oh, how I wish I knew that I could bathe my baby…that no one is more equipped to parent my baby whether alive or not, than me, as his mother. How I wish I would’ve spent more time…memorized his sweet face and every inch of him down to his chubby toes, dressed my baby girls in clothes to fit their tiny bodies…held them a little while longer. We can’t go back, dear mama, but we can make a difference for the next family. And, as long as we have breath in our lungs, we will tell their stories and do what we’re able to ensure families have the resources and support they need by sharing these tools, knowledge, and experience…equipping caregivers who walk with grieving hearts.
To find out more about this incredible training program or how to bring these resources to your hospital, visit the Sufficient Grace Ministries training link.
To order Dreams of You Memory-Making Resources/Comfort Packages for yourself, click here.
To order Dreams of You items for your hospital as a birth professional, click here.
This video captures the difference in experiences when we alleviate regrets by giving parents the opportunity to embrace time parenting their babies, even when life is brief.