Susan Warden had a personal mission – to develop a patient/family centered Bereavement protocol for the NICU. Susan completed her mission and continues to lead the NICU bereavement Team. Susan oversees the supplies used to create a memory box for the family (keepsakes, footprints, etc.). She also sends cards to the families – a month after the baby’s death and then, again, a year later on the anniversary of the baby’s death.
Susan has developed educational materials for the NICU staff and actively orients new staff members regarding the physical and emotional aspects of bereavement care. She considers this program “her ministry”. Please read the following story Susan wrote for her QUEST project in April 2011. It is a powerful story!

Attached story from Susan Warden:

“One night, a new Neonatal Intensive Care Unit (NICU) nurse, who was also a new graduate and just off orientation, was assigned a baby with Hypoxic Ischemic Encephalopathy. It was possible this baby might die. The new nurse had never cared for a baby who died and had not been in the unit when an infant death occurred because fortunately, this does not happen too often. The charge nurse came to tell me the baby was about to come off the ventilator and asked me to orient the new nurse to what we do in our NICU for bereavement care.
I have bereavement supplies set up in a storage area of the nursery. I took our examples of a memory book, hand and footprints, cards, a poem, plaster of Paris foot mold materials, and the camera along with a couple of new, handmade preemie outfits and blankets to the bedside. The new nurse looked at the items and had a "deer in the headlights" look. She was overwhelmed. So, I continued guiding her through what we can do for a family with a dying infant.
Then, I went back to my cove area of the nursery to ask other nurses to watch my babies and give them report. I returned to the new nurse and the infant on the ventilator. I suggested that she let the parents choose which outfit to dress their baby in and that she offer the mother the opportunity to bathe her baby after he passed. The new nurse said she was nervous about caring for the baby with the mother present after the baby died. We talked about how important it might be for the mother. This would be her only chance to care for and bathe her child.
The neurologist had confirmed two flat EEGs. The opinion was that nothing could be done. The doctors talked to the parents who then made the decision to take their baby off the ventilator. So, the neonatologist took the baby off the ventilator. We wrapped him in the blue blanket the mother chose and put him in her arms.
Both parents held their son for the first time. We left them alone in the private NICU room and checked on them periodically to see if they needed anything and check his heart rate. The parents talked to each other and to their baby. The mother sang to him. They touched his face and hands. With the parents' approval, we took pictures of the baby and family for keepsakes. After some time, we no longer heard a heartbeat.
The neonatologist confirmed the absence of the heartbeat and pronounced him. With the mother and father's permission, we took more pictures. We would put these photos along with the blood pressure cuff, pulse oximetry probe, armband, and anything else of the baby's into the keepsake box for the parents. The new nurse and I helped the mother bathe and dress her baby. She held him again for a while. We gave the family time together and left to make a foldout card that includes a lock of hair, a footprint card, and tape measure and pictures. We put the items in a hand painted memory box.
When they were ready, the parents went down to the parent lounge. We undressed the baby and began wrapping him in the shroud to go to the morgue. The new nurse kept repeating to me throughout the night, "Thank you for being here with me." She asked, "How do you know how to do all this?" She asked, "How do you hold it together when the family is around?" I explained that I don't always hold it together. Sometimes, I just have to cry with the family.
I have learned things with experience. I have done hand and footprints since the first time I cared for a baby who died. Along the way, families have told me how much it means to them. I went to a "Resolve Through Sharing Conference" here at UT. Rita Hillhouse in Regional Perinatal brought the two day conference to UT. There was a panel of mothers who lost babies. They described what helped them and what did not. Based on these experiences, I developed our bereavement care.
We finished placing the baby in the shroud. Then, the new nurse and I folded the outfit and blanket the mother picked out and put them in the memory box with the other items. We gave this to the parents.
After the parents left, I asked the new nurse if she had questions and if she understood the process. I remember she said she never would have thought of asking the mother if she wanted to bathe her baby. The new nurse commented that this mother seemed so grateful to have the chance and would probably always remember it. Later I reminded her that bereavement care is never a single person's task. We always help each other. I also explained that we send a card to the parents a month after the baby's death and another card at one year. This lets the family know that we remember and the parents, their baby, and their family matter to us. They are not the only ones who remember this child.
I want people to have as positive experience as possible since these are the last moments and memories they will have with their baby. I am willing to take the time to teach others. This is my ministry.”