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.

Perspectives of a genetic counselor Introduction The prospect of meeting with a genetic counselor can be intimidating for the client. There are often fears associated with the investigation of one’s own make-up in the most basic sense. People also often have misconceptions about what genetic counseling is all about. As technological knowledge expands, and the genetic basis for common disorders is understood, it becomes increasingly likely that the “average” person will have the occasion to speak with a genetic counselor. Ideally, this sneak peek into genetic counseling will help to alleviate the anxiety of the unknown and help clients to prepare for a more productive genetic counseling session. What is genetic counseling? The American Society of Human Genetics (ASHG) defines genetic counseling in the following way: Genetic counseling is a communication process which deals with the human problems associated with the occurrence, or the risk of occurrence, of a genetic disorder in a family. This process involves an attempt by one or more appropriately trained persons to help the individual or family 1. comprehend the medical facts, including the diagnosis, the probable course of the disorder, and the available management; 2. appreciate the way heredity contributes to the disorder, and the risk of recurrence; 3. understand the options for dealing with the risk of recurrence; 4. choose the course of action which seems appropriate to them in view of their risk and their family goals, and act in accordance with that decision; and 5. make the best possible adjustment to the disorder in an affected family member and/or the risk of recurrence of that disorder. Who are genetic counselors? Genetic counselors are members of a health care team. They provide information and support to families and serve as patient advocates. They are also educators and a resource to other health professionals and to the public. Genetic counseling has historically been provided by physicians, social workers, and nurses. Currently, the majority of genetic counselors are professionals who are masters prepared through accredited programs focusing on the combination of medical genetics and psychology. Counselors are certified through the American Board of Genetic Counseling which was established in 1993. Previously, certification was through the American Board of Medical Genetics. Genetic counselors have become highly sub-specialized - there are counselors that specialize in only prenatal genetics, pediatric genetics, or adult genetics. Some counselors work in commercial labs as liaisons with the referring community. Some counselors work only in research settings. Some counselors work only with patients affected with specific disease types, such as inborn errors of metabolism, neuro-genetics, or cancer genetics. Others work in a single disease clinic, such as a cystic fibrosis center. Private practice is also a growing area for genetic counselors. As the Human Genome Project further uncovers the genetic basis for many “common” diseases, genetic counselors will be found more globally throughout medical practice. General principles of genetic counseling In the ASHG definition, genetic counseling is described as a communication process. This implies mutual participation between counselor and client. This is a strategy that is often unfamiliar for many patients and this unfamiliarity can create anxiety for them as well. This may also be a new approach for many physicians. With this new role, the patient assumes responsibility for his or her actions. In order for the counselor/client relationship to be effective, and to encourage patient participation, the style and dialogue in a genetic counseling session must be catered to each client’s needs, goals, and perspective. Non-directiveness is a fundamental principle of genetic counseling. This refers to the belief that clients are capable, if thoroughly informed, of making appropriate choices for themselves. Counselors need not and should not make decisions for their patients. Non-directiveness is essential. Ethnicity and socioeconomic background have to be considered. Ideally, a genetic counselor will maintain “unconditional positive regard” towards the patient, as well as maintaining continuous sensitivity to the patient’s varying emotional states. Without these considerations, the counselor cannot elicit all relevant information and, additionally, will not be able to transmit information effectively. It has been said that genetic counseling is 20% genetics and 80% counseling, and I would agree. The purpose of genetic counseling is education of patients, but also empowerment, advocacy, and support of patients. Genetic counseling is often crisis intervention. Patients may be asked to deal with or to make decisions with significant and perhaps lifelong implications in a time of emotional upheaval. Issues surrounding medical interventions in pregnancy certainly fall into this category. Deciding whether or not to undergo a particular prenatal test can be very stressful. This pales in comparison, however, to deciding about what to do when faced with abnormal diagnostic test results. Many health care providers have worked with couples in these situations. However, few can truly understand their feelings and their pain. Genetic counselors are trained to appreciate the psychological aspects of these patient dilemmas. The genetic counseling session Who are genetic counseling patients? In this context of prenatal diagnosis and testing, I would like to outline a “typical” genetic counseling session. To touch briefly on an enormous subject, prenatal genetic testing has become an issue that, at some time, almost all pregnant patients face. To review, testing is available in many forms, at different times in gestation. First trimester genetic diagnosis is a relatively new area in obstetrics and represents the cutting edge of prenatal testing. Ultrasound at approximately 10 weeks of gestation (counting from the first day of the last menstrual period) can confirm viability, the number of gestational sacs, and identify certain major structural anomalies, such as fetal anencephaly, in skilled hands. Also, screening for chromosomal abnormalities by looking at the nuchal area at this early gestational age is becoming more widely used. Second trimester genetic testing is more familiar to most patients. This includes maternal blood tests such as the AFP test or the “triple” screen, which is used to determine whether a patient appears to have a relatively high or low risk for certain chromosome abnormalities or other birth defects. Level II ultrasound, also known as targeted fetal ultrasound, provides a detailed look at the fetal anatomy. With advancements in technology, ultrasound has become an increasingly relied-upon tool in pregnancy management. Referrals for fetal echocardiography, a subspecialty of fetal ultrasound, have also increased. Amniocentesis is an invasive diagnostic procedure that can provide information about the fetal chromosome pattern. Additionally, specific hereditary conditions can be tested for through biochemical or DNA analysis. All of these tests allow for identification of congenital anomalies or syndromes in a pre-viable fetus. In the prenatal setting, parents may seek genetic counseling in consideration of some of this testing in an apparently normal pregnancy. Less commonly, parents may meet with a genetic counselor to help them at a time when this testing has identified a problem in a pregnancy. Content of a genetic counseling session For pregnancy related issues, as outlined above, there are, in general, two types of genetic counseling sessions - those where parents are concerned about potential risks and outcomes, and those where patients are concerned about a known problem with the pregnancy. Despite the vastly different nature of these sessions, there are common aspects. Any counseling session has two major components - the provision of information to the client, and a therapeutic dialogue where the counselor listens to, hears and responds to the patient’s reactions to this information. The structure of a session Most genetic counseling sessions are scheduled by telephone and conducted in person. It is occasionally necessary to have these discussions over the telephone; however, this is not optimal. Ideally, there is a private room specifically designated for counseling purposes with adequate seating for the genetic counselor, the client(s), and any other people the client feels are appropriate to have there. In a medical center, the genetic counselor may have students or other health care providers that are interested in observing a genetic counseling session. Of course, this should only be done with the patient’s permission. Patients have every right to decline the presence of observers, especially in what can be a very emotionally-charged session. Initially, the genetic counselor will go through the process of “contracting” with the patient. This refers to outlining the session with the clients to establish common objectives. Parents may be asked how much they know and understand already. Especially in the situation of a known fetal anomaly, patients come to genetic counseling with wide variation in the amount of information they have been given before this session. Patients are often asked what their expectations are of the genetic counseling session and what they hope to achieve in the session. The counselor will provide the patient with a general overview of the session that should take these expectations into account. By establishing common objectives and finding out what the patient knows and wants to know, the counselor helps to ensure that the client’s needs are met and the session is productive for all involved. Most genetic counseling sessions include gathering family history information from the client. This may be as simple as a few general questions about the patient’s health, family tree, and ethnic background. As the situation dictates, however, obtaining family history information may be much more involved, such as constructing a pedigree (a medical family tree) with detailed medical information about extended family members. Family history information is important in assessing potential risks in healthy patients, as well as for increasing our understanding of a known problem in a pregnancy. Knowing in advance that this information will be discussed, the patient can prepare for the genetic counseling session by gathering relevant family history information in advance. In a prenatal setting, the genetic counselor will also inquire about potential exposures to the pregnancy, including maternal illness, prescription and over the counter medications, recreational drugs, environmental exposures, etc. Next, most discussions will focus on the issues at hand - concerns about risks, or, counseling about a specific diagnosis. Throughout this part of the discussion, the counselor will often ask the patient if the information is being presented clearly. Important points will often be repeated and written down. If this is not done, ask for it. Many counselors draw diagrams to help illustrate their points. Pamphlets and other patient literature will commonly be provided. A genetic counselor recognizes that it is difficult for families to retain all of the detailed medical information at a time of emotional upheaval. Written materials for the patient to take home can serve as a useful review, as does a follow-up phone call. In some situations, the counselor will provide the patients with a summary letter of their session as a reference for them. Recognition of and responding to a patient’s feelings are an integral part of the genetic counseling session. All clients present to genetic counseling with some level of anxiety, even in the most routine of circumstances. This seems to be particularly true in the prenatal setting. The risk for a problem, or the diagnosis of a specific anomaly in a pregnancy, is often the realization of any parent’s biggest fear - “something wrong with the baby”. This anxiety can be overwhelming and often has a significant impact on a patient’s self image. Additionally, it is appropriate to include in a genetic counseling session a discussion of “what ifs” regarding different potential outcomes. This allows clients to consider how they might feel in different situations, and to assess their own coping strategies and support mechanisms should a problem be identified. Lastly, a plan is agreed upon. The goal of any genetic counseling session is to allow the patients to achieve a good enough understanding of their situation to make their own informed decisions. In general, there are no right or wrong answers; patients choose a course of action that is most appropriate for them and for their family goals. Counselors are often asked “what would you do?” in a variety of situations. It is unfair to the patient to answer that question directly, as there is such great variation in every individual’s perspective, needs, and goals. The genetic counselor may instead review issues that would help the patient to come to their own decision. The genetic counselor will act as a facilitator, but should not make a decision for the patient. To follow up, as mentioned above, the genetic counselor will often telephone a client a few days after a session. At times, patients will often call the counselor first with questions they “forgot to ask” or for clarification of certain points. Patients should be encouraged to write down their questions and concerns. It is especially difficult for clients to remember everything they want to ask during what is often an emotionally charged environment. Summary: In summary, genetic counselors provide a wide range of services as members of a health care team. The goals of genetic counseling are to provide patient education, support, advocacy, and continuity. As the availability and range of genetic testing increases, genetic counselors are found in ever expanding roles. Additionally, more and more people will be offered the option of meeting with a genetic counselor. I hope that this option may be looked upon as an opportunity... an opportunity for patients to work with a genetic counselor to gain an understanding of their own genetic issues and concerns, which will empower them to become active participants in their own healthcare.

A Social Worker's Perspective On Pregnancy Loss When I was asked to write about the emotional impact of pregnancy loss I began outlining a rather lengthy, descriptive paper about phases of the grief process, stages of pregnancy, and how they inter-relate, It was to have been objective and informative without being too formal or academic. As I further considered the topic and reflected on my almost twenty years of experience as a clinical social worker in an inner city teaching hospital's obstetrics department my focus and goal changed. I decided to write about the people -- all the people-- who are affected by a pregnancy loss. In this way I hope to convey the deep and far reaching effects, impact and impression of this kind of a loss. The effects are at times unrecognized, at times invisible, and at times denied. This article is not intended to be a "how to cope" manual regarding pregnancy loss, but rather an exploration. of the complex, multifaceted dynamics that occur in pregnancy loss. It is MY hope that this article will serve to inform two different groups of people --- those who have and those who have not experienced a loss. By reading this article, bereaved couples who have suffered a loss will feel less alone, more connected and better able to cope. Readers with no experience of pregnancy loss will have an understanding of the extent to which the that loss affects its survivors. What is pregnancy loss. and who are the women that experience it? For my purposes, in this paper, pregnancy loss is all inclusive, It is: early first trimester miscarriages, ectopic pregnancies, second trimester genetic terminations and natural losses, the demise of one baby in a multiple gestation, a full term stillborn, the death of a baby soon after it is born. And who are the brave, courageous women who suffer these losses? The group is large, diverse and spares no one. All ages, religions, races, income levels and stages of life are represented. Imagine these women, united in loss, but as different from each other as one could expect: 12 year olds who aren't even clear how they got pregnant, "older" women who are pregnant for the first time, single-or married or divorced women, women with unplanned or unwanted pregnancies, women who have been trying to conceive for years. Each and every one of them utilizing her own life experience, support network, and understanding of the medical problems, will have to cope and move on. How does one understand the impact of a loss? In part, by assessing the value of what has been lost. The word pregnancy conjures up images of smiling, gurgling babies, tired, bleary-eyed adults and a "glowing pregnant woman". It is a word that epitomizes joy, hope for the future, dreams and relationships yet to be realized, and perhaps, the next step on the ladder of life-- parenthood, For some people, it represents the fulfillment of a lifelong goal. Expectant fathers share and experience this early emotional connection along with their partners. They often take great pride in considering their soon-to-be role, their contribution to society, and the mark their child will leave on the world. In Rogers and Hammerstein's "Carousel", the leading man sings "My Boy Bill', a song anticipating, savoring and worrying about his upcoming new role and responsibilities. Many health care professionals who choose to work in this specialty area do so because it is considered a "happy" job. For everyone involved in "pregnancy", there seems to be an abundance of positive energy invested in it, committed to it, expected of it. Pregnancy, from a non medical, societal perspective, is considered a simple and natural part of life. Getting pregnant, staying pregnant, and then delivering a healthy, bouncing baby is the way it's supposed to be. Undoubtedly then, we can understand the utter devastation felt by people when there is a pregnancy loss. Parents feel cheated out of a wondrous, natural experience that was to be theirs, Suddenly their dreams are shattered and their hope for a family, is lost, or temporarily put on hold. Instead of planning baby showers and decorating rooms, they are planning funerals and putting baby items away and out of sight. This is not what's supposed to happen., Your baby isn't supposed to pass on before you have had a chance to hold, love, care for it, and share in it's life. Mothers and fathers alike express: shock, numbness, sadness, emptiness, anger (at G-d, at life, at others who have healthy children), and confusion. "I keep thinking this is just a bad dream and when I wake up I'll still be pregnant.". They just don't understand why something so natural, pure, and simple has slipped out of their grasp, Bereaved parents sometimes allude to a loss of focus and direction, an inability to know what to do next. "I got the room ready and quit my job so I could be home with my baby. I was planning to spend my time raising my child. What do I do now?" Feelings of guilt, blame, and failure may also begin to surface. While these last few reactions have no basis in reality, mothers often feel ultimately responsible for the well being of their unborn child and therefore culpable. They review events leading up to the loss, seeking an answer, a cause, a reason. Sometimes they unfortunately settle on an action or lack of action of their own as the causative factor. Women often think: "If only I hadn't carried those heavy grocery bags." "If only I had rested more". "If I had eaten better and gotten more exercise." "If I hadn't been so nervous and worried so much." All these ruminations lead to the same conclusion-"I didn't take good enough care of my baby." Feelings of failure can arise out of comparisons--"None of my friends had any problems with their pregnancies. We went to the same doctor and exercise classes. She works too, and probably doesn't sleep any more than I do." All of which leads to-"What's the matter with me? How come I can't do this simple thing?" It is not uncommon for their partners to go through a similar process. Many men have shared these comments with me: "If I'd helped more around the house, she could have rested." "Maybe we should have waited longer. Maybe I shouldn't have pushed for a baby so soon." The context in which the loss is perceived by the mother and her ability to freely communicate how she is feeling may contribute to her long term adjustment. A not uncommon, although rarely discussed response to the ending of a pregnancy is a sense of relief Women don't readily share such "unacceptable" thoughts as: "This just wasn't the right time for me to have a baby, but I never considered abortion or adoption as alternative." For some women, now that a baby won't be coming, life can continue on it's originally intended course--a continuation of school, beginning a new job, getting out of a bad relationship, struggling to balance existing parental and child care stresses. Relief may equally co-exist with feelings of sadness and grief For some women the situation is even more complex. "I used to think about how much easier it would be if I weren't pregnant, if somehow it would just disappear and things could go back to normal. Now my wish has come true, and I feel like I killed my baby." It's vitally important for parents to have the opportunity to talk, without hesitation, to their partners and to supportive family, friends and health care providers about their conflicting feelings regarding the loss of their baby. Parents are not alone at the time of a pregnancy loss. The members of the health care team who are caring for the patient often experience a similar flood of reactions and emotions. After all, isn't it their job and commitment to safely guide a woman from the beginning to the end of a pregnancy, to check and recheck to make sure there aren't any problems, to anticipate problems that might occur and resolve medical complications that do arise? However, sometimes even all their caring, attention and use of modem technology can't stave off the inevitable. We can certainly comprehend why they may not want to be the ones to confirm a bad diagnosis, a poor prognosis or the absence of a fetal heart beat. But it must be done. They have to communicate the news, answer the questions if possible, and watch the looks of shock and despair overtake the faces of their patients. It would be foolhardy to think that this does not take a toll. Caregivers may (and do): cry along with the parents, feel upset, feel responsible, wish they could take away the hurt, review their work to see if there's anything they could have missed, wonder how much longer they can do this kind of work, talk with colleagues for support, or they may busy themselves with work and move on--pushing away the feelings. After all they're only human, For everyone involved --patient, partner, medical provider-- there may be a sense that the situation is out of their control, that in spite of everyone's best effort this pregnancy, this life, was lost. As time goes on, bereaved parents may be viewed as being at the center of the crisis of pregnancy loss and it's impact on daily life. Just as a pebble dropped into water generates infinite concentric circles, the effect and impact of pregnancy loss spreads out to touch many people in more ways and for longer periods of time than one might imagine. Having already discussed the reactions of the mother and father, I want to look at the first circle. The parents, children, family and close friends of the bereaved come to mind. These are the people who would have been the grandparents, siblings, aunts, uncles, cousins, pals of the baby. They have already shared with the parents in the growth and development of the unborn child, have seen the ultrasound pictures and have felt the baby move and kick. Some may have offered to loan cribs and baby clothes, offered to baby-sit, begun to knit a blanket or sweater, or have offered to share their toys and even their room. Now they have to shift gears and direct their efforts to providing comfort, support, a listening ear, a calming touch--to helping in whatever way they can, While the expectant mother or couple eagerly accepted previous offers of services and goods, how will they now respond to offers of emotional support and to being taken care of? Over the years f have found that people strive to be independent, capable, and self-sufficient and want to be so considered by others especially in times of crisis. Will the bereaved parents accept help from those who want to give it? What about the children who would have been siblings or cousins? What do you say? How do you explain the passing of a baby to a youngster eagerly awaiting its arrival. If there is a funeral should the older children attend? Is there a way to be clear and truthful about the loss without making it sound too frightening? Although in the midst of their own grief, parents are concerned about the other children at home, who want to know that mommy is OK and when the baby is coming home. Parents have to continue in the role of caregiver while requiring care themselves. Parents generally want to discuss these questions and are open to suggestions. Often the family pediatrician who is familiar with the child can be very helpful in framing answers to the questions children inevitably ask. Continuing the flow out from the center, you next encounter neighbors, coworkers, classmates, the people from your congregation, local shopkeepers, etc. A whole new set of concerns arises. How many of them knew about the pregnancy, are pregnant themselves, or have young infants? How does one explain what happened to concerned and curious associates? How much should you say and how much do they really want to know? How will you face it when their due date arrives? Should you go to the baby shower you've been invited to next week? Your daily acquaintances are undoubtedly as unsure as you are.. They don't want to upset, ignore, or anger parents by anything they might say or do. These are delicate situations and we all have to act or respond as best we can, There are no simple answers. On the outer perimeter and on a more global scale, pregnancy and babies are everywhere. So, just when bereaved parents feel composed and ready to face the world, they are bombarded by TV commercials for Pampers, pregnant women in the supermarket, and babies in the park.. One can't escape the realities of birth and death, pregnancy or its loss. Each day women, their partners, and their families move ahead and hopefully grow stronger as they recover from the complexities of pregnancy loss. Many may connect with local support groups. Support groups and books on pregnancy loss are excellent ways to increase one's understanding of the topic and to receive ongoing encouragement, motivation, and strength. A few clinical snapshots dramatically illustrate the depth and breadth of the impact of pregnancy loss: A young Hispanic couple wants a photo of their anomalous stillborn to send to their parents in Puerto Rico so the family can better understand what happened. A 30 year old woman and her husband softly discuss what to tell Molly, their 3 year old daughter, who is waiting at home with a teddy bear for her baby brother. An oriental man with a stoic, expressionless face sits beside his silent wife whose face is streaked with tears. A 16 year old boy approaches his parents wanting to ask about the family secret-his twin brother who died at birth. A 50 year old only child with ailing, aging parents wonders what things might be like if the losses hadn't occurred and she was now the oldest of three. A labor and delivery floor nurse who has just learned she is pregnant is assigned to care for a woman with a fetal demise. A 25 year old woman, mother of a 5 year old, suffers a second trimester loss and becomes suicidal because she feels she's lot everyone down. In closing, it would be difficult and unfair to define, catalogue, or quantify, the emotional impact of pregnancy loss in any standardized way. The reactions to loss are as unique and special as are the people themselves. Loss touches people in many different ways and at times for years into the future. There is a fluid process of adjustment, reflection, and acceptance--at times easier, at times more difficult. The child is gone, but never forgotten, and often the subject of continued fantasies about what might have been.

Perspectives of a Newborn Special Care Unit Nurse 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.

Emotional care of a perinatal loss and its impact on the labor and delivery nurse "Oh, you're a labor and delivery nurse? ... That must be so much fun!" is the usual comment gushed with great enthusiasm when people find out what kind of nursing I do. They might be envisioning loving Madonna's with their angelic babes all pink and healthy with the nurse present for surrogate mothering when the mum's needed to rest. What a great job that would be. The reality is that nursing at a level 3, tertiary care center is a mixture of emergency nursing, operating room nursing, an Intensive Care Unit, some basic maternity and a large portion of teaching. My college education prepared me for that and much more. What the best education in the world cannot prepare one for is a perinatal loss- a stillborn infant, or a premature delivery where all efforts fail to save the neonate's little life. I have been enabled through education and empowered by experience, to manage the clinical aspects of caring for a family facing a perinatal loss, but what do I do with my own sense of grief? No one ever told me that as a nurse I would grieve so deeply and sometimes so often with families that were until recently strangers to me. As a professional, my head knows to stay focused so I can help start the family on the right path for grieving. A complex and perhaps never-ending process at a time that should be filled with great joy. Also as a parent, my heart tells me many other things. This is what a dear friend (and coincidentally, my minister) calls stirring up the 'pot of loss'. When faced with a loss situation, all previous losses are stimulated. They will rise to the surface much like stirring up a soup or stew made of every ingredient one Is kitchen might have. By stirring, this concoction, left so long on the back burner, is seasoned, tasted again and a new seasoning - a new loss - added and put back to simmer. A family experiencing a perinatal loss will have their 'pot of loss' uncovered and all previous losses will surface. They may remember a family member's death, the loss of a friend, loss of a pet or loss of a dream. How they dealt with these events will impact on how they deal with this perinatal loss. Likewise, it is my 'pot of loss' that impacts on how I deal with them as their nurse. It is a very well seasoned pot that provides the sustenance needed to continue in a healthy way. I taste from it briefly, am strengthened and go forward to do the work at hand. The first thing I do when admitting a family with a loss to Labor & Delivery is to initiate a Perinatal Loss Checklist (PLC). The PLC is documentation of the events that transpire and the support team involved. It is a concise list that helps the nurse stay focused while providing care. It also insures that all team members are notified that their services may be required. The team includes the doctors (obstetrician and pediatrician), the nurses, social worker, religious ministry and frequently the genetics department. We work as a team, one service complimenting and adding to the others contributions. The end goal to be facilitating the family to grieve. Depending on circumstances, the family may not see all members of the team while on Labor & Delivery, so the PLC also acts a guide to the team. What is not documented at delivery will be attended to at another time prior to discharge. A copy of this form is forwarded to the attending physician's office so that the repetition of painful questions can be decreased and accurate communication of helpful information will be increased. The PLC's most important function is to stimulate the collection of memorabilia for the families, The time spent on the labor and delivery floor after birth is often the only time the family may have with this child. Whether the loss is a stillborn, a severely premature infant or a baby born with anomalies that are incompatible to life, it is important to emphasize the act of making memories. I will often make suggestions to the family to help them plan for the delivery of their baby in order to make the most of this encounter. In the best of circumstances, I take the time to discuss with the families their desires for after the baby is born. They may not have any concrete plans beyond deciding whether to see their baby or not. This issue alone can be of great importance. Those who are sure they would like to see their baby, make my job that much easier. The ones who are unsure, I will advise to see the baby, offering to hold the infant for them while they look on, if that might make it easier for them. My most difficult task is working with a family that chooses not to see the baby at all. I respect their decision, (albeit with a heavy heart that I keep to myself), and inform them that some families feel this way often as a result of fear. I can only assure them that reality is very often less frightening than imagination. I usually take this opportunity to share some of my previous experiences. First of all, I state that their decision is not irrevocable, leaving the door open for them to change their minds. Until they are discharged or the baby is picked up by the designated funeral home, there is always an opportunity to retrieve the baby and see it in our morgue's family area. While I know that the most optimal time is soon after birth due to the baby's condition, all attempts are made to make the viewing as easy as possible. I also give them the benefit of my previous experiences with families that have contacted me expressing regret over having not seen their baby. I feel comfortable that I am doing this in a very non-judgmental way. When a family opts not to see their baby, I take extra time holding this baby in private. This is one of the ways I help myself to heal after caring for a loss. I take opportunities to inquire about their faith and their desires for a chance to meet with a member of our clergy staff. Some families have strong desires while others may not have even thought of having the baby blessed or a prayer said. This is just one more of the ways in which I as the nurse can help to guide the family through an event in which they have no prior experience. During the delivery, I try to keep the room a safe, quiet place while providing physical comfort and facilitating the birth process. I will have informed the physician or midwife of the wishes of the family during the labor so that all of us are aware and sensitive to their needs. I position myself on one side of the bed and encourage the father (or significant other) to be at the other side. If the father has expressed fear of watching the birth, I suggest that he look into his partner' s eyes towards the top of the bed. I often see them glancing at the delivery. I usually am ready with a blanket to take the baby from the midwife and place it gently in the prepared crib. I preheat the crib and have baby blankets and towels lining it as I would do for any infant. I cover the baby completely or partially as to the predetermined plan. I often note that if a grandparent is in the room at this time, they venture over for a closer look in the crib. once the physical aspects of the delivery are completed, such as the delivery of the placenta, repair of the perineum and mother's vital signs are stable, I am then able to turn my attentions to the baby. I will wipe the baby dry taking care not to damage the skin which may be very fragile. I do the baby care in the room of the patient as often as possible. By having the families watch this process, they are able to see how I handle their baby with gentle and respectful touches. I think it also helps them to see that it is acceptable to touch these babies. I am tearful at the deliveries that I attend. I cannot help but be saddened by the loss of potential life and love that this family is experiencing. I believe that my tears help to validate that this is a life worth grieving for. I encourage the family in the room to touch the baby as I prepare the baby for presentation to the mother. Sometimes I will hear them comment about features that resemble family members. Even in babies with anomalies, there is often a trait they notice to be familiar. When I hand the baby to the mother, I will introduce the baby as "your son or daughter". I make every attempt to place this baby into the family. When the families discuss naming, I suggest that they can either go with the name that they had originally chosen or they may wish to save that name for another child and chose something different. The point is to encourage naming this baby to help give him or her an identity within the family. Protocol requires taking pictures of the baby both clothed and unclothed. The parents are informed that this will be done and that they may choose to take the pictures home with them. If they opt not to take them home, they are kept on file with the social worker. There has been an incident of a family returning to claim them seven years after delivery. Most likely these may be the only pictures of this child as many families are not prepared to bring cameras with them. I try to take pictures that I would want of my own family. The Polaroid camera at work allows me to take multiple shots to achieve the best pictures possible within the limitations of the camera. In recent years, I have begun to photograph the actual deliveries, the blessings and the family members with the baby. These are unopposed pictures and I am careful to be as unobtrusive as possible. I also take pictures of the baby alone using a background frame that I developed to eliminate the hospital equipment from the scene. By using stuffed animals donated from the labor and delivery staff, I can add a nursery atmosphere as well as use the animals to prop and pose the baby. These pictures have been very well received. The rest of the memorabilia packet contains foot and hand prints, locks of hair, the hospital identification bands, the actual blanket, tee shirt and hat that the baby wore during the pictures and while being held by the family. I also enclose a copy of When Hello Means Goodbye and a baby memory booklet filled in with the time and date of delivery, weight, length and the persons who have been involved with the patient's care. In the future, our perinatal loss care will include but not be limited to: follow up phone calls - at 2 weeks, 6 months, 1 year; an invitation to an annual memorial service; encouraging involvement with community support groups; providing in-services for our co-workers; and continued evaluation and improvements to our memory package based on input from families, co-workers and professional journals. The care of these special families is rewarding and extremely satisfying work. I choose to care for them as often as I can or to precept a less experienced nurse to allow her to grow in a nursing skill that is not always covered in a text book. I am very fortunate to work alongside a very compassionate team who are dedicated to making this tragic road somewhat easier to travel.

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.

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.

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.


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.

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!!

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. Any advice would be appreciated.