Showing the Baby : In-hospital

Medical personnel including physicians, nurses and pathologists are trained excellently to deal with medical treatment, diagnosis and even crisis. They are still however trained far less in dealing with personal crises and severe emotions and loss, and find difficulties in intense situations sometimes even after years of mature medical experience. One of the most difficult of in-hospital experiences is dealing with either announcement of terrible news, such as a terminal illness or death, or in dealing with significant events such as offering parents who have experienced stillbirth or neonatal death the opportunity to see or hold the baby. The following is a synopsis of years of experience both of myself and others, small suggestions, on how to greatly reduce trauma and unpleasantness and prepare parents in the process of choice.

The Choice is Parental

Whether to see or hold the baby is not nearly so controversial as it was 25 years ago, when I first began my research and writing. Medical views have changed greatly in that time, as have clinical psychological views: many more understand now the importance of a last goodbye and the necessary closure it provides. ¹ The general public however is far less accepting of the choice to see and or hold an infant dying in the perinatal period, and many feel it to be pathological and grotesque: we have changed medical and counseling opinion, but we have not succeeded in changing public opinion as much as we should. This general public opinion negatively affects parent's choices, as they find conflict between and emotional and cognitive desire to see and hold thier infant and an unnecessary restraint, fearing how they will be perceived often by the community they have will have to return to post-hospitalization.

Presenting the Choice

When an stillbirth or neonatal death occur in the hospital, there is no easy way to announce the death. Frequently when the baby is very little, the announcement has been made in the labor room, and is often sudden and unexpected. {With today's expanding technology, more perinatal deaths are diagnosed in-utero} While a hospital may have bereavement teams or programs well in place, the difficulty of presenting choices to parents who have just had a little one die are enormous.A few suggestions are helpful here:

If a mother and /or father have a willing clergy member they are comfortable with, it may be appropriate to have them present: Ask the parent though, with some Church relationships today this could be a detriment if the parents are not consulted and willing.

The best person to present the choice is not always the same person in every case. A persons sensitivity to the issues is every bit as important as having a knowledgeable person present: both are critical. The parent's comfort level is ultimate. Ideally, unless you have a very compassionate Pathologist or Physician addressing information about the deaht, it may be wise to also include a social worker, or other compassionate support person trained in dealing with perinatal bereavement.

Preface the presentation of information about the death with comforting interchange: do not jump clinically and immediately into the facts and medical details: these are necessary, but must be couched in supportive tones.

Discussing Cause or Aetiology of the Perinatal Death

When the parent is ready, discuss the known details of the death. Parents may want to know the 'cause' of the death, and are usually central in this focus, although in the case of stillbirth, the ultimate cause is often unknown, and the only thing that will satisfy the need to know is 'what happened last'---such as a cord accident, kidney failure such as Potter's syndrome or placenta abrevia complications. Parents need a cognitive anchor to hold onto. If you do not ask the parents to repeat back your information, you may find as mentioned elsewhere, a great misunderstanding in your properly relayed information about the baby's death. For example, one pathologist I knew, tried to discuss with a parent who had had one twin born alive and one twin die, a condition in which one twin gets all the nutrition from the placenta and the other does not, causing the death of one twin. After discussing the medical facts and implications, the Pathologist asked the mother, to explain back to him her understanding. She explained back that one twin, the living twin had 'starved out' the other twin. This is an example of difficult cognitive states in early grief: one is overwhelmed by emotions, debilitating emotions and deep pain: for this reason attention and understanding or 'cognitive processing' may be greatly debilitated too: there is also often an unwillingness to invest in life at this early point: parents will half pay attention.

While this may seem like a momentary deficit, a misunderstanding of information about the baby's death can cause serious problems in the months and years to follow: rather than see the above example as one of a tragic random medical 'accident'; the mother saw 'motivation' or 'profit' on the part of the living twin. The one who 'gained' live by benefitting from the nutrition, was seen as living at the expense of the other. Grief when one twin dies and another lives is difficult enough: there is a constant roller-coaster of emotion, wavering between joy and future-thinking, and death, despair, grief and funerals. Parents of twins sometimes find themselves feeling guilty for joy over the living twin, when they should be grieving the other, or conversely robbing the living of attention and joy as they mourn the other. Problems with one small piece of information, in the hospital, around the time of birth, can paint the future mental well-being of the child who did survive. A young child told they are a twin which survived at the expense of the other may see him or herself as having done something 'awful' in utero and carry unnecessary guilt for an event they had no role in. Likewise, a parent may burden the living child with thoughts of the deceased child: as discussed elsewhere, the deceased child is often seen to be perfect and while comparisons are often erroneously made with the subsequent child, with twins, it is contemporary. The new twin survived at the 'expense' of the 'perfect' ideal child. Though subtle, it can cause parents to without awareness misplace or distort feelings or actions toward the living child. Such subterranean feelings can affect mores, beliefs, relationships and mental wellness for years and often be undetected or untraceable even as parents seek to understand feelings years later.

The above is an example of how critical seemingly small events can be in the hospital shortly following a death. The repeating back of information and 're-relaying' of information can literally avoid intense life problems down the road.

Stressing Guiltlessness

Following the above is the critical importance of stressing Guiltlessness or parents in the hospital in a reasonable and accurate way. In my dissertation research of almost 25 years ago, I found nearly all mothers reported some experience of guilt or self-blame, or in some cases spousal blame for the death of the infant. Others enraged, frustrated, terrified and despairing blame the physician, often following with litigation. While a few deaths can be attributable to events or actions, such as a diabetic mother not forgetting but refusing to take insulin, or a deliberate trauma, most infant deaths are tragic but random: there are a handful of 'congential' conditions but even these are in no way the fault of a mother or father, and some are undetected until the time of the death.

Leaving Parents Alone to Say 'Good-bye'

A great deal of this 'handbook' will run afoul of traditional clinical teaching which teaches a 'compassionate' non-involvement with patients. To some degree, this is wise, because a physician, especially a young inexperienced physician will find that he or she cannot carry all the burdens of the world, and that their job is hard enough to meet physicial and crisis needs of their patients without becoming too 'involved'. In a profession where compassion is not at the apex of value, approaches with more tenderness may not seem immediately worthy or may even seem anathema to care. Grief however is a peculiar albatross, and hangs around the neck of both the bereaved and the physician. The bereaved parent is aching from a life blow quite unexpected and overwhelmingly painful. The physician or caretaker want to say something quickly to make the pain go away: they are used to applying treatment and much of the time seeing it work. Grief however, does not as poetry would like us to believer 'heal like a wound'. It is a complex process and struggle. Nothing anyone says will make it better: but much one says can make it much worse.

For these reasons, the next suggestion may seem uncomfortable to some, but it is absolutely essential as long as the parent is in accord. Once the baby is presented, with the attending physician present and there is a discussion of changes, and positive comments, answeres and explanations, then the physician needs to leave the parents alone for a season of time. How long is not something one can set for all bereaved parents: some may need a little more time than others. When I was a young person, still in graduate school and still learning, I was not so sure this was wise, because I worried if parents could deal with it without support. As part of an experienced team of 'interveners' though, I found with experience that it was a very positive move, and parents with the exception of one out of hundreds, were very glad for the choice.¹

After explanations, the physician may ask, "Would you like some time alone?". Parents' wishes should always be respected: we too often think we know what is 'best' for another. Most parents will say 'yes'. A few suggestions are helpful: make sure the infant is in a blanket and that it is clean, explain beforehand, as already mentioned, the coolness to the touch, ^note2 When parents are alone with the baby, most often, they tearfully do what most parents do: they look at hands and feet, counting fingers and toes, and commenting on who in the family they look like. Most are very contented in finding that their fears of the baby's physical appearance are unfounded: most babies which die around birth look basically similar to those born live: they are still, but only a very small percent have physical anomalies. Viewing alone helps in dispelling a parent's worst fears: bereaved parents, like the general public often assume that stillborns have deformities, but only a few do. Further, even when there are anomalies, they may be far less in reality than in a parent's imagination. Parents gain peace and resolution with careful preparation and explanations, and reality. One must remember, that while to public opinion, or a physician not given to comfort and care, time spent with the recently deceased infant may seem morbid or unhealthy, to the parent, it is a chance to both say hello and goodbye before having to make difficult funeral arrangements. It is a point of closure. The most common reaction I observed upon returning to the room 10 to 20 minutes later, was both tears and quiet smiles. The parent is reassured that the baby was not 'abnormal', they have a memory to cling to of a real and not imaginary infant, they have for a moment satified the 'aching' of empty arms so often reported following infant death. It is also a marker point or anchor point in grief which aids later in reconstructing the history of the event which aids in healing and restoration. Fortunately, most hospitals now allow this choice: it was not that way 30 years ago. Again the critical point is choice. If a parent is resistant because of unfounded fears of their own emotions or of the features of the infant, one can gently reason and give information as to the possibility of regrets and the fallacies they entertain. If after gentle discussion, a parent again refuses, no matter how good the caretaker may think it would be for the parent, they should never, never force the issue. Grieving parents have civil and human rights: we are all allowed even to choose that which is not good for us. Furthermore, no one choice is good for every single person: a parent knows themselves. Grace is as important as the choice itself.

^note1[The one not certain had other life issues, and any choice would probably have been problematic]
^note2Many hospitals or pathology labs have a warmer. This should be used only to take the cool feeling away, so as not to traumatize, too warm, and it may produce wrongful feelings that the baby is alive or lived longer than thought: one needs to use caution here.

Preparing the Infant's Body for Viewing

It is an individual decision when to take the nursery down

Some of the preparations of the infant's body have already been discussed. Many of the suggestions here come from years of experience of many health care professions, including those in pathology, obstetrics and counseling professions.A baby who has died is often misperceived as having deformities or abnormalities, which is most often not true. Even when the baby may have a severe problems such as a severe cleft palate, beside the cleft palate there is often not other problems. The baby with the deformity is just as much a son or daughter as the baby with none. Some parents will feel the need still to see the infant, while others will choose not to. In many ways the choice should be treated in the same way. Information comes first, then discussion of the information and dealing with feelings, and finally, the choice and showing of the infant. Only approximately 11% of stillborns have some sort of congential malformation. Many if not most of those are not that severe. Anencephalic infants are often imagined horribly as babies without a skull or head, but the truth is these children often look quite normal facially, with a small or distorted cranium. Even these babies may be shown and held depending upon parental preference. It is adviseable to wrap the child in a receiving blanket, partially draped over the back of the head, and remove it or allow parents the determination. More parents choose not to see or hold the infant when there is a defect. Again, the foremost value in care is respecting individuality and choice.

When I worked at a large teaching hospital, we used the following procedure:

1. When a death occurred, our team was notified, and a determined contact was made for initial intervention.

2. After initial crisis intervention, the choice of seeing or holding the baby was given, usually within 24 hours. In these days of DRGs and other determinations, hospital stays may be quite short, although there is still usually enough time to counsel and present choices. When the decision is made, the arrangements for the in-hospital viewing should be made as soon as possible. Too long a wait can only add to a parent's stress, although it is recognized that hospital procedure often makes delays inevitable.

3. Before presenting the infant, have pathology prepare the infant for viewing. One pathologist, Dr. Donnelly, had the following recommendations after years of experience: a)always wrap the infant in a receiving blanket, b)dress the child minimally: a fully dressed infant who has died may be a little too much for some parents: different hospitals will have differing ways of doing things-some will put a premie diaper on the child, others feel that is not logical and may produce ill feelings. There should be a preset way of doing things before these issues come up. Remember, the child is not living, so overemphasis on dressing the child like a living newborn may cause as many harmful feelings as underestimating the child's humanity.

4. The discussion with the parents before the viewing and entry of the person with the wrapped infant is critical to a tender moment of saying goodbye vs a traumatizing event. Slight changes in the coolness and color of the skin should be discussed so as not to alarm parents: however, the normalcy of the child's appearance should also be noted. There should be a discussion of how the visit will be handled, at first with a caretaker present, and then time alone if chosen. Fears should be allayed. When the parent anticipates the opportunity, the child may be brought in. How long to stay with the parents will vary according to individuals: some will need more support than others. Also, do not be afraid of tears: they are more threatening to physicians than to anyone else. We used the procedure of then stepping outside the room for 10 minutes or so and then knocking and re-entering. That way, if there is distress, it can be quickly detected, although in the close to 400 contacts we made in hospital, I never encountered alarming reactions.

Mostly, as mentioned before, it is a time of being a parent for a moment and saying goodbye. I heard gratefulness for these few moments more than I heard anything when parents returned at a month to 6 weeks for post-partum visits. After stepping back in the room take a few more moments to discuss parental feelings. Focus on family resemblances, the normalcy of the appearance of the child, and the depth of the task ahead: living through a great grief. More than one parent has noted that it was not WHAT people said at the time that helped as much as a comforting hand on a shoulder or just being their and allowing tears and distress without judgment.

'Recovering the Child after Viewing

After the viewing, the child can be lifted in the same manner and with the same respect one would lift a living infant. If the parents chose a name, use the child's name. Avoid calling the baby 'it' but use correct gender references. Consider how you would feel in such a situation and anticipate what you may find comforting, but do not entrap parents in your expectations. After discussing feelings, take the infant and gently leave, assuring them that if they need to talk you or part of your support team will be back. They need an anchor.

Recording Events in a Medical Record

Even though it is a crisis intervention event and not a 'medical' one, there should always be a note made in a parent's chart regarding each visit and any significant events, especially the viewing the infant. This helps different shifts and nurses and other persons take better care of the mother and family when you are not there. A night shift nurse may need to know why a mother is expressing concerns, or why she is at a little more peace than the night before: it is a significant event. It also helps later to know who had contact with the mother and her family.

Requests for Repeated Viewings

Some clinical personnel may be alarmed at a parent's request for a second viewing, but this also is normal: remember these short contacts are the only times parents have to say goodbye and 'parent' even for a moment. It is alot easier to anchor the memories in grief on a child you have seen rather than imagined. A thousand times it has been noted that we are a 'death-denying' society. Just 50 to 100 years ago, death like birth was handled at home. When a child died or a baby was stillborn, the child was often in the house near the mother and family until the time of burial, and the dressing of the child and sometimes even the making of the coffin was a family action: it was part of life. Mourning did not hurt more or less then or now, but expectations were different and death was seen as tragic but not unbelievable. For centuries, mothers and fathers aided even in the preparation of the child's body for burial, and a community turned out in support. Today, too often, the body is whisked away, viewings are non-existent or minimal, and funeral choices are made like arranging catering. Everything about the death is demeaned.

When requests are made to see the child a second time or even a third, many physicians and social workers balk, concerned that a morbid 'process' is going on: this is almost never true. Remember, only 10 or so minutes are often given in a short hospital stay and this provides the image a parent has forever of the child that doesn't come home. We have 10 or 15 minute viewings, 15-30 minute graveside services and then the parents are supposed to go back to life as though one of their children had not died. Give liberty. Sometimes hospital 'busy-ness' and protocol preclude being able to take the time for preparation: morgues and pathology labs these days are busier than they have ever been. If it is possible though, do not deny a second viewing: there is little chance that that a mother will have harmful side effects by one last goodbye. The moments in the hospital while outside preparations are being made are critical to later emotional well-being.

The Reluctant Parent and Parents Who Say 'No'

In most of life, far beyond 'professional experience' I have learned that greater than any 'method' of caring for grieving people the most fundamental values of human dignity must be upheld, with respect and love [that's right, even in a medical setting!] for the individual, the most critical of which is liberty. Gordon Allport, a famous psychologist once said, "If you want to know about a person, ask the person". The Bible provides a counterpoint and states that no one really knows themselves. Even with that continuum, though, even the Word of God teaches liberty and while it is not a usual topic in clinical circles, it is a critical human lesson. Parents in the midst of grief and mourning need comfort, support, information and listening. They do not need someone in a white coat forcing a decision on them like a recommended treatment for a wound: mourning has some similarities, but also varies according to the individual facing loss. I remember an incident in which a young 17 year old mother had lost her first baby. Bereavement in teenage years often looks different than in adulthood: teens are more likely to express loss in terms of rage, 'acting out', delinquency, silence, moodiness, etc instead of open grieving. A staff member, having recently read Kubler-Ross's On Death & Dying kept demanding that the teen be open about her feelings. The young mother was not eating her meals: not at all unusual in early grief. The staff member determined this young woman needed to 'move through the stages' of grief. That was a fallacy to begin with: grief is more complex than 5 neat stages: it waxes and wanes, takes complex and simple patterns, and each grief paints a unique picture. Further, one does not 'force' into healing or a 'next stage'. The staff member so antagonized and threatened the young mother, that the mother finally screamed at her to get out of the room. The staff member confided in me that she was glad to see that the teen had moved into 'anger'. This is why an uninformed person meeting a clinical situation instead of a human one is not the best person to deal with the loss of an infant or other loved one. It is not our role to 'push' people through stages or into 'health' and even more it is not within our power to effect a 'cure' of grief. Support, kindness, information and carefulness are better principles. If a parent makes a choice not to see the baby, even though we KNOW that it would be a positive experience, once can counsel regarding the possibility of future regrets, but not make the decision for them. No choice in hospital or out should ever be forced. One mother I recall was making a choice to have her infant cremated in-hospital [not all hospitals have this facility], even though she was of a religious background which did not support cremation. Questions arose to motive: for some it is a real choice, in which they cannot afford the expense of a large funeral, for others, they really want to 'forget about it', and the hospital disposition of the stillborn's body is the easiest way to do that. For others, pressure is made: the wife wants a funeral and burial, the husband does not; or worse, the doctor or social worker try to aid the parent in leaning towards their personal preferences, 'wrapping things up quickly'. When staff members 'push' towards choices because of expediency, it can cause lifelong regrets for the parents. Likewise, parents rushed into decisions, may later feel ill feelings towards clinical caretakers, sometimes even ending in litigation over care. Often, a parent will not know how to deal with the death, and may not even know what they want: one parent I remember was incensed over the staff in a neonatal intensive care unit dressing the baby for the funeral home: she remarked later that she would have been incensed either way, if they had or hadn't. Choices are hard in a cloud of grief. But facilitating choices carefully is one of your main functions in caring for bereaved persons. If a parent expresses reluctance towards a choice, or you perceive they are making a choice in order to deny and run away from the death emotionally, several suggestions may be helpful:

ALWAYS ask the reason for the choice: explore feelings and alternatives.
Explore potential feelings of regret, or feelings towards making other choices. Aid gently the mourner picturing him or herself in the future.

If a parent chooses not to see or hold the stillborn, offer an alternative such as a photo or memento, such as a hospital bracelet, footprints, or NICU cap. These are anchors.

If you get a clear sense that refusals are because of intense pain and not reason, you may keep a few of the mementos above to be offered at a post-partum visit again. This can be done gently, but the parent's rights should always be respected to their own feelings.

Have available offers of help. Sometimes parents really want, for example a funeral, but for young people, it may be a first death, and they do not even know how to contact a funeral home, or make arrangements. In this case, a member of an intervention team may be specially 'tagged' for this task, having already made contact with potential resources.

Lastly, if a parent refuses to see or hold their infant, or doesn't want to make choices, and discussions have ended, do not treat the parent any differently from those who chose to see. Respect choices. You may be able to come back at a later time and ask if they are confident in their choices, but that is different than insisting or pushing. Parents will heal better knowing they made their own choices, even if they may have regrets about some.

Clinical vs Human Responses

I taught for a couple of years in a Medical School, and I know from experience that no one is trained to be a 'sensitive guy' in clincals. Medical students and interns spend years with voluminous dry, technical information, learning to 'treat' and 'assess' and determine outcomes, but not to listen with the heart of a fellow human being. The latter however is what is required in grief for parents to heal. It is perfectly all right to let down defenses momentarily and express sorrow. While it would be adverse to 'move in' after the family goes home, it is not at all unprofessional to attend the funeral of an infant who has died, especially if a lot of contact has been made. It can be a great point of healing and memory for the parent, giving the unspoken affirmation that their baby's life had value. Physicians and nurses are often busied and often cautioned not to get too involved in their patient's lives, and this really is cogent advice most of the time, for your own emotional protection. But signs of respect and empathy are not an affront to the clinician, they are the sign of a mature and human one. Balance is the key: uninvolvement and cold clinical responses to death and mourning are as harmful as a deadly treatment to an illness; but overinvolvement would of course be unwarranted and odd: time and carefulness determine the learning of an equitable way of doing both.

Preparing Parents to Leave the Hospital

Once the parent has seen or not seen the infant, make funeral or cremation arrangments and signed all the paperwork, a time comes to leave the hospital. It is comforting if a patient or actively involved nurse or caretaker can be their to accompany a mother out, especially if she is alone. If they wish not to have this accompaniment, their wishes are of course to be respected: again this is the least time in their lives when they need 'over-control'. In pre-departure discussions it is wise to bring up feelings they will confront arriving home: these can include:

Dealing with siblings and family members
Confronting baby related materials and furniture which will not be used
Confronting the intense feelings and pain, which is perfectly normal but often frightening.

Siblings need to understand that the child has died, or they will develop 'magical' thinking about where the child is. Stillborns do not become 'angel's ' by anyone's theology: they have died and in Christian and Jewish theology are received into God's loving care in mercy and grace. There are many excellent resources to explain the death of a siblings to other siblings, and these may be used, but children should receive careful information and be allowed if old enough to make choices regarding attending a baby sister or brother's funeral. They will often react more with questions than anything, some too frank for parents in early grief. Prompt and willing responses help. Young children often see death as 'temporary'- they may think the baby will come home later. Others think that their 'thoughts' or 'wishes' not to have another child in the family 'caused' the baby's death: children also need assurance that none of the tragedy is their fault.

Likewise, spouses are wise to guard their early words to one another. Many harbor unspoken 'suspicions' about the fault or insufficiency of the other causing the death, words spoken out loud in early grief which are accusatory can lead to the death of the marriage, at a time when both parents need each other.

The pain also of announcing to family members the baby has died instead of been born, reopen the wounds with each call. Parents are best advised that many will not only not understand, but say hurtful things. Likewise, confronting constant reminders such as cribs, baby products and advertising, toys, nurseries, diapers and clothing can be as knives in a parent's heart. It is best to have contacts ready for parents before they leave the hospital, such as SHARE, a parent-to-parent support group, or persons in the community adept at counseling. Sending parents to random counselors, even 'good' ones can be deadly if the counselor is not experienced with this kind of grief [or a pastor]: the counselor may understand as little as the general public and may underestimate the grief and the life and see normal grief as an abnormal reaction, adding even more heartache to the mourner's world. Have an outside contact who is trained, comforting and available. Also make sure parents know they can call crisis intervention 24/7: a lot of the worst distress comes in the night hours when no other resources are available.

Lastly, make sure parents know that their feelings and experiences are NORMAL: other sections in this site discuss what is normal and what is not. [Overview of Griefor The Forgotten Grief] For the first two years, grief can wax and wane, look terribly odd or strange and still be perfectly normal. It is absolutely normal to be preoccupied with the death: it is the death of their child, after all. Parents need to tell the story, and order things chronologically. They need to keep mementos and 'proofs' such as photos, ultrasounds, documents, bracelets, clothing etc which belonged to the infant. It is never wrong. If after two years, they cannot leave the nursery, or function normally or if grief is getting worse not beginning to subside, then one can be worried about more complicated patterns. Give parents a chance to be themselves and work through pain none of us are 'good' at working through. At the post-partum visit, assess what choices were helpful, and look for problems arising: the clinician, at this point will be replaced by quality referrals. Our human response to tragic human events is not weak or unprofessional, it is a sign of maturity.

The Forgotten Grief: Presenting a Stillborn to Parents: In-hospital suggestions.