What is it like in a Newborn Special Care Unit? It is many things: some of our activities have been featured on TV shows which talk about ethical issues, expensive medical care, and sometimes of the medical miracles which often happen there. For those of us who work in these units our job is multifaceted also. It can be incredibly intense as the staff struggles with all of our combined expertise to save a small life. It can be rewarding when we can watch a baby who was deathly ill finally go home to his or her family. It can also be agonizingly sad when in spite of all our efforts, a baby dies.  

All the babies who come to our unit are alive. Those children who are stillborn or are delivered before an age for which any resuscitation can be done are cared for by the staff of Labor and Delivery staff. Often, since we are a tertiary center, we receive babies from other hospitals, sent to us for the type of specialized care that only a few hospitals can provide. The babies that we receive can be premature, or have physical defects, heart problems, experienced a very difficult delivery or have a need for specialized ventilation therapy which is not available at other nearby hospitals.  

So what is my job in all of this? The easiest way to describe it is to relate the events the life just one of the many babies I have cared for. This is an actual case which I have disguised to protect the privacy of the family involved. Tom was a full term baby. He was the first born child of a married couple , Luis and Carmen. He was born at an outlying hospital and transported to us for worsening respiratory distress. When I received him, and became Tom’s Primary nurse, I could see that we would have to fight very hard for this child. Tom was diagnosed as having Persistent Pulmonary Hypertension, a situation in which the baby’s lungs remain in their fetal state and do not allow for proper oxygenation of the blood. He had a tube in his windpipe and we began to turn up the settings of his ventilator. Meanwhile, he was in shock and I rapidly prepared and administered the many syringes of fluid and medication to try and support Tom’s blood pressure. The attending physicians and the house staff made the decision to approach the family for consent to use a new study drug, Nitric Oxide which has allowed many babies with this condition to "open up their lungs" and be ventilated. They spoke to the parents as they were leaving the hospital where Tom was born and after explaining Tom’s condition and the treatment they wanted to try, the parents agreed and said they were coming to Yale. As we began the Nitric Oxide and continued the high frequency ventilation, Tom was deteriorating. As I drew and sent each new blood gas, we all hoped for an improvement. Preliminary lab results told us that Tom probably had an infection in his blood. Tom had already been started on antibiotics , and as I prepared his second dose I hoped that this round would help us turn the corner. The doctors ordered and I mixed new drugs to try and help Tom’s heart push against the resistance o f Tom’s stiff lungs. More fluid was pushed. Blood products were given. The doctors talked about ECMO a type of bypass pump which could act as part of Tom’s lungs until they could get better. We needed time - time to get ECMO team together, time to get the parents in to see their baby, time to allow the antibiotics to work, time to call in Social work, time…. And it was running out… and then we knew…what we had feared all along… that we would not save this child…. Perhaps this is the most difficult time for us as staff members… to know that we tried so hard and no matter what we do, it is not enough. Some people would now say, "there is nothing more we can do"… but there is… and in that moment which sometimes comes collectively and sometimes separately we all had to redefine our goals. We needed to try to keep Tom alive until his parents arrived. We needed a little time to prepare the parents as best we could for the death of their child. We needed to find the best way to support a couple who had just had a birth and would now have a death.  

Luis and Carmen arrived in time. As gently as they could, all the gathered team explained that we had done all we could but Tom was dying. His heart rate was dropping and he would die soon. We asked them if they wanted Tom baptized and all the staff gathered at Tom’s bedside as the priest baptized Tom , and prayed for support for the parents. The attending and I remained at Tom’s bedside. Together we explained what choices there were for Tom’s final minutes. This is always such a difficult thing to do. We ask parents to choose from options which none of us want Do they want their baby to die in his bed on all the life support? Do they want to hold him while he is still on all the equipment.? Do they want to remove him from the life support and hold him in as he dies ? Do they want to hold him in the ICU or go to a private room? What we try to do is to offer them a "road map" for a territory where they have never been… they can choose which direction to go… we will be there to help and support. Luis and Carmen asked about what would happen when Tom died. We explained that we would give him a small amount of morphine to make him comfortable… that his heart would slow even more… that he might breathe a few times on his own… and them he would be still… and that if they wanted they could hold him as long as they wanted. We asked if there was anyone else they wanted called. They said that Carmen’s parents were on there way. We alerted the secretary to let us know as soon as they arrived. Luis and Carmen wanted a chance to hold Tom before he died. Since we believed that he would die quickly off life support, we curtained off Tom’s section of the nursery and moved all of Tom’s equipment to allow his parents to hold him. Both Luis and Carmen wept as their new son was placed in their arms for the first time. As the monitors showed Tom’s vital signs continuing to dwindle, his parents told us that it was time to remove those last connections which seemed to be merely prolonging their child’s dying. We escorted Luis and Carmen into a private room near the nursery, and all of Tom’ s caregivers worked together to remove all the life support we had placed there. Tom., for once, free of all his tubes and wires was gently wrapped in a warm blanket and a clean shirt and hat and taken to his parents. Tom was still alive as I placed him in his parents arms. At the parents’ request, the priest returned and Tom’s grandparents arrived in time to hear the priest’s blessing. As the parents murmured to Tom , he took a single gasp and was still. Luis asked if Tom was "gone"- the attending physician listened and said "…yes".  

We have a protocol in our unit for what to do when a baby dies. It serves as a guideline for our actions, but much of what happens next is determined by the wishes and needs of the family. We offer them our presence but also give them the option of being alone. We allow supporting friends and family to be present if the parents wish but we also give the parents the choice of experiencing the death of their child alone. We encourage the parents to see and hold their child but we respect their right to refuse- some parents find holding their baby at the time of death is just too difficult- we explain to the parents that the staff can hold their baby instead- and if this is what the parents wish, we will hold that child until death has occurred. We often offer the parents the option of bathing and dressing their baby- if they choose not to, their baby is always bathed dressed before it leaves our unit. We prepare a "Bereavement Packet" which has a Memory Book for foot and handprints, locks of hair and mementos. We include several pictures of the baby - the setting and style of the photos are at the choice of the parents- often we take pictures of the parents holding the baby as well as close-ups of their child. The Bereavement Packet also contains literature about grief, lists of support groups, a bibliography and additional materials.  

Luis and Carmen held Tom for over an hour. Carmen’s parents held him too, and then left Luis and Carmen alone with Tom. This couple expressed the wish to be alone for a while so we agreed that I would come back when they called me. After this period, I returned to them and explained about the contents of the Bereavement Packet. Our Social Worker had come in and spent some time with them and. had discussed burial options . Although some parents refuse the packet, (and we keep it on file in case they want it later), Carmen and Luis wanted their packet. They wanted to see Tom after I bathed and redressed him so I tenderly washed Tom and put him in clean clothes. I also obtained Tom’s hand and footprints as well as a lock of his hair and I placed these inside the memory book along with his crib card and name sign. After I brought Tom back to his parents, they held him for a few more minutes and said their last good-byes. They had discussed their wishes regarding autopsy with the attending and had signed the necessary paperwork. Luis and Carmen handed Tom back to me- this is always a hard moment for all of us… I hugged them both… and then they left their precious child with me and walked out of the unit . I prepared Tom for his final journey and then he was gone from my care. I returned to his empty bedside . I paused to reflect on his short life and to review all the events that had transpired there. As always, I hoped that I had done my best to meet the needs of his family. I am aware that my efforts to support this family have a cost for me. A death is draining- I would need to "refill my cup". I have experienced so many deaths in our unit and I know how important this personal restoration is- each if us has to replenish our "compassion stores" before we can best care for the next family who needs us. Sometimes this is hard to do. ..  

As Bereavement Chairperson for our unit, I do much of the nursing follow-up of our families who have had a baby die in our unit. As I do for all the families, I prepared and sent a sympathy card to Luis and Carmen. I added them to the list that we keep and the following March I sent them and invitation to our Night of Remembrance in which we invite all the families of children who have died at Yale in the last two years. It sometimes overwhelms me as I send out the invitations,… each name is a personal loss to that family… and there are so many that I was there for… and I remember… Luis and Carmen came to our remembrance ceremony. As Tom’s name was read, I handed a flower to Carmen who had come forward to receive it. At the reception afterward, I talked to both of these parents with whom I had shared a short but intense and meaningful experience. They were going to a support group and said that they had good and bad days…the holidays were tough… but they had hope that maybe next year when they were invited again, Carmen might be pregnant. I told them again to call me if they needed me… I shared with them the short life of their child… I would him remember him too.  

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