Ephemeris Project Submissions
Role: Nurse
Perspectives of a Newborn Special Care Unit Nurse -Excerpted from Parenthood Lost
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 179 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 180 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 181 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
Role: Nurse
A Poem written for a newborn under my care in the Newborn Intensive Care Unit
Startled and fascinated
by the beauty and fragility
of your wings,
I watch as you move
so gently so quietly
almost unexpectedly
through my world.
And then I watch as you move on,
fluttering softly into the distance.
Pleading silently, I beg you,
please ... don\'t go.
I haven\'t yet had the time
to memorize
to remember
to understand
the uniqueness of the beauty that is yours.
I know I cannot hold you for long,
capturing you for my world.
But, rest gently with me
if only for a moment.
That I may treasure the memory
and the beauty of the gift that you are.
Role: Resident
As part of a busy weekend morning, I was told that I would be taking care of a Spanish speaking patient who was being induced for premature preterm rupture of membranes at 17 weeks. This not-uncommon occurrence at our hospital was never something to be excited about, especially on a busy call day. Usually, if things are uncomplicated, the nursing staff is present for the delivery and I do not need to be involved. Sadly, the biggest thought going through my mind was that I was glad the patient was less than 20 weeks so that I wouldn\'t have to do all of the extra paperwork.
Later that morning, I was called by a frantic nurse who was very concerned because the baby\'s foot was seen in the vagina, and that she was worried that she would not be able to deliver the baby in breech presentation. I went into the room to see that patient -- the baby was easily delivered. The child was quickly wrapped in a blanket since the mother did not want to see the baby after it came out. The mother and baby\'s father were sitting on the bed, holding each other, and crying.
I was overcome with a huge mix of feelings. Excitement over being able to deliver a vaginal breech, sadness over the loss of this child and its importance to this family, and frustration that I couldn\'t speak enough Spanish to communicate my concern. My overwhelming feeling was that of embarrassment realizing I had been so eager to focus on the increase of work that this baby represented instead of the fact that this was a pivotal moment in this family\'s life and that they needed the help I could offer.
I think about this experience often to be reminded that being a human always takes precedence over being an overworked resident.
Role: Medical Student
I'm a 4th year med student getting ready to enter OB/GYN residency this summer. I\'m no stranger to pregnancy loss, as I\'ve lost 2 of my own, one early in my 3rd year of med school. I find it astonishing how within one facility (the hospital where I\'m receiving my training and where I had my D&C after a 9 week IUFD) the quality of care and compassion could be so varied. My obstetrician was utterly compassionate, as were the OR staff. When I got to the floor post-op, I ended up on the Mother-Baby unit, for lack of other beds away from the babies, and the LVN assigned to me walked in began mashing above my umbilicus stating that she had to "massage my fundus," so that my uterus would get back to its normal size after the delivery. I was so disgusted. I wanted to tell her to get out, read my chart and then come back after asking the charge nurse why my fundus could not possibly be at the level of my navel.
Role: Medical Student
This past July, I was up at our main campus, completing an ultrasound elective, and was about 28 weeks pregnant. During the second week, I began the scan of a woman who was 20 weeks pregnant and couldn\'t figure out why it was so hard for me to get a good view of the BPD. I really thought my technique suddenly faltered, so I moved down to get the AC. My attending asked me to quickly go back up to the 4-chamber view, turn on the doppler, and then I knew....her fetus had died. He finished the scan, and all I could think of was how stupid I\'d been only thinking of my technique, then how grateful I was that I hadn\'t blurted out anything inappropriate, and then how awkward I felt, as this woman wailed in her anguish, crying that she had just felt the baby kicking at the beginning of her appointment, and how it wasn\'t fair, it wasn\'t fair...and there I was. Belly swollen, trying to listen compassionately, silently recalling how the last person I wanted to see after losing my 2 pregnancies was a pregnant woman, and wondering if that was what she was feeling. I wanted to cry with her, but then was glad I didn\'t this one time, because of my own hormonal milieu, I could easily start, but not very easily stop. Once again, the attending was marvelously caring and gentle, but little follow up was offered, as the family had been referred from a town 3 hours away.
In med school we talk a lot about listening, caring, compassion. In a busy environment, it takes a lot of reflection, willingness to learn from those who have become comfortable and really good at comforting patients emotionally, and more and more, I believe, a good infrastructure for coordinating care. I\'m currently participating in a hospice elective and plan to discuss perinatal/neonatal loss during a presentation. In a search for local resources, I\'ve been stunned how little is available within my state, let alone in this medically underserved area where I am currently training. I am intrigued by Hygeia and hope to incorporate similar support services within my practice for my future patients.
Role: Parent and Nurse
I am always grateful when I encounter sites such as this one. I am thrilled that the educational focus includes many types of caregivers involved with patients dealing with IUFD. I am a mother of 6 (one who is no longer with us, he was delivered at 21 wks gest.) and a labor and delivery nurse on a very busy high-risk L&D unit. We work with families on almost a daily basis who are dealing with some form of loss. Our facility has approximately 7800 deliveries total per year. Many have come before us who have provided bereavement training for our staff, but as the years pass we are seeing how much more we can do for our families and staff, thus we have established a perinatal loss committee. I look forward to utilizing your materials and researching what is being done in our residents\' program. Thank you for all you do to bring healing and hope!!
Role: Medical Student
On the very first day of my OB/GYN rotation, when I was a third-year medical student, a Hispanic patient at about 30wks came into the ER complaining (via translator) that she hadn\'t felt the baby kick in a day or so. We put her on the fetal monitor, and the baby, while still alive, was having severe heart rate decelerations, so we ran down the hall to the OR as fast as possible. There were three OB residents and the attending all grouped around the operating field, so there was nowhere near them I could be and not be in the way. They delivered the baby into the arms of the neonatology team, and hoping to be of some help, I followed them. I put on a pair of sterile gloves and asked if I could be of assistance. The neonatal nurse who was performing chest compressions looked relieved and said that I could take over for her (so she could run get IVs, saline, etc. for the code effort).
I performed chest compressions for a half an hour, while the neonatology team tried desperately to save the baby. We lost her. Prior to this, when the neonatologist indicated that we were going to have to give up soon, I had suggested that we Baptize the baby--I knew the mother was Spanish-speaking, so I figured the odds were good that she was Catholic. The neonatal nurse told me to go ahead, so I disconnected the saline from the umbilical line, allowed some to drip onto my fingertips, placed my hand on the baby\'s head and said "I Baptize thee in the name of the Father, and of the Son, and of the Holy Ghost. Amen."
Shortly thereafter, I completely fell apart emotionally in the hallway outside the OR. I asked the translator to pass on the information that the baby had been Baptized, but I don\'t know if she did or how the family felt about it (those experiencing perinatal loss are NOT further subjected to medical students, so I couldn\'t see the family again). I felt guilt over the fact that while performing chest compressions, I accidentally sloughed all the skin off the baby\'s chest (so fragile). If that baby had any momentary awareness in it\'s short life, that memory would have been of pain, and I was the cause of that pain. I still cannot even tell the story without crying. The flashbacks became less and less frequent over time, but there are still times when...well actually today...
You see, I am now a second-year resident in psychiatry. Always wanted to do psych and am very happy in my residency. But today my team was consulted on a patient who had just lost a baby--"evaluate for depression." The nurse who called in the consult told me over the phone that the Chaplain had baptized the baby, and I lost it once more. At the word "baptized" I was back in that OR, re-experiencing the event all over again. So much pain. So, I got online to try to find resources, and stumbled upon this site. It is really good to know that there is support for healthcare professional in this regard.
Role: Midwife
I've been a midwife for over 30 years. In that time, I’ve been with patients who have lost babies to the usual causes such as early miscarriage or lethal defects. We\'ve had the rare emergency situations, but with fine outcome. In all these years, I\'d never lost a baby at birth without the prior expectation from prenatal diagnosis. I\'d never lost a baby to an \'accident of labor".
Last summer I walked in on a precipitous unexpected (unknown) near-term footling breech. Suddenly there were toes, and knees and hips and waist. And everything which can go wrong at a breech birth, went wrong. I\'ve been trained in breech birth but have only had the opportunity to do a few. I used every technique listed in every book -- and many of them worked. I managed to free the arms (both extended over the head) and to turn the head from posterior to anterior, and to use MSV to bring the head from extended to flexed - but I could not bring the head through the cervix for many minutes. It was totally trapped by the cervix...and it needed that extra few centimeters combined with my efforts and the moms to free the head.
While waiting - and working - I made an airway and we never lost a cord pulse, but the baby never looked good. Never used the airway. Never was responsive -- never had normal color (even when just her toes were out) -- never moved. And when born with a heart rate above 100, never had any other sign of life. Never did spontaneous breathing. And was removed from life-support a couple of days later.
The bloodwork showed a sign of severe infection of some kind (not gbs), a nearly lethal blood dyscrasia, and it\'s likely the outcome would have been the same even if the baby had been born vertex or if I could have gotten the head out without delay. But still, I feel terrible about it. I feel so sorry for the family.
I was invited to - and attended - the private viewing, and memorial services. And I think this helped a lot. (It helped me anyway -- I hope it helped the family.) I just felt so helpless. And I don\'t think there was really anything that could have been done to change that outcome. As you know, that\'s always the thing which haunts us most... wondering what else we might have tried. Wondering if we did the right thing... because we always want a miracle. Sometimes we get it. but sometimes we don\'t and it\'s hard. I don\'t know what else to say, really.
I think care providers can use more support though. we have lots of choices these days about getting education about how to help families. There are seminars and classes we can attend and in general, I think we do things better for the families than we used to in the old days when a baby was whisked away and mom was given tranquilizers and sent home with the advice to not think about what happened, and to just try to have another baby right away. This was pretty bad advice. Callous and cold ---even though it was well meant and there are some family support groups and websites like this one.
But docs, nurses, midwives are still pretty much on our own. It\'s sure not something we can talk about with our families! And the legal situation means that sometimes we\'re not supposed to discuss a situation with "anyone", yet most of us really need to talk to someone who understands what we\'ve experienced.
It\'s really hard to be present when a terrible diagnosis is given. It\'s hard to sit with parents while their children are dying. We do it because they need us to be there, of course.
It\'s hard when a resuscitation fails. We know we can't save every baby of course... but knowing it, doesn\'t mean it\'s any easier.
