CLIMB

The Death of Twin Babies: Some Comments for Grief Counselors


Some have called twins, triplets and other higher multiples “babies who arrive in groups”. Sadly, these babies often also die in groups. Though it is seldom mentioned in the media coverage surrounding multiples, or even in books about infant loss, very many parents are experiencing the death of both their twins, or all of their triplets, quadruplets, quintuplets or higher multiples. While adequate statistics are not kept, and population studies do not usually reveal which losses of multiples were of both or all babies, there is reason to think that total loss may be as common as the death of one twin. The risk of prematurity is of course much greater in twins, and often results in babies being born at the same or similar gestational age and with the same outcome. It is not uncommon for a twin pregnancy to progress very well until suddenly “crashing” at 20 to 24 weeks, when the babies are so near and yet so far from being able to live outside the womb. Miscarriage and stillbirth are much more likely in twins, and often involve both babies (especially since the death of one may mean the death of the other if there is a shared placenta); it is not uncommon for big, healthy babies to die in-utero in the third trimester. Identicals are at increased risk for congenital problems, which may directly or indirectly affect both babies. They also may have some unique conditions which are often lethal to both: being in the same amniotic sac, twin transfusion syndrome, twin reversed arterial perfusion, conjoined twinning, and others. The pregnancy may give rise to a number of maternal conditions which may cause the deaths of the babies. SIDS (Sudden Infant Death Syndrome) occasionally strikes both babies, most often simultaneously. Sometimes, babies die months apart: our group includes a family who lost one 28-week triplet on Memorial Day, one on Thanksgiving, and one on Christmas. Because there are two babies, anything that could happen is also twice as likely to affect the pair – and it is possible to have a combination of losses in one pregnancy and birth. One baby may be stillborn and the other die from prematurity, a medical accident, or SIDS; one may die from prematurity and one from congenital problems, illness, or earlier loss.

Many of the parents who are experiencing these tragedies are those who wanted their babies so much that they underwent years of expensive, invasive fertility treatments and were amazed to conceive not only one but more than one baby, a whole family at last. For others, the twins were a special surprise either as their first children or an addition to their family. For all, there were some doubts about their ability to meet the challenge of having more than one baby at the same time – and even more, excitement at having been “chosen” for this special, once-in-a-lifetime kind of parenthood. Modern ultrasonography has meant that many or most parents know definitely of their multiples as early as 6 to 8 weeks of gestation, and have many months to become very bonded to each baby and to “my twins”, often naming them at the end of the first trimester. Often the nursery with two or more of everything is ready months ahead of time because of the prospect of bedrest and prematurity.

Just as with the death of one multiple (or more, with a survivor) we at CLIMB have witnessed the collision of these realities for years since my original efforts to “find someone else”. One of the first to join our efforts was a mother here who had had a “textbook pregnancy” (her first, at age 37) only to learn near term that both her twin daughters had died in-utero for no known reason. As soon as I began a newsletter intended for those who had lost one twin, we received many letters and calls from those who had lost both twins or all triplets and clearly also very much needed some special support (and quickly expanded the scope of our group to include all multiple birth loss); over the years, there have been hundreds in contact with us, many of whom have been very active in our group. We would like to offer the following comments based what they have expressed, applicable especially to perinatal loss:

1) As in any multiple birth in which one or more baby had died or is in danger of dying, there are likely to be very complicated circumstances surrounding the death of both twins. One or both of the babies may have died after days or weeks of crisis – crisis times two, crisis coming in addition to the death of the other, or crisis preceding the death of the other. The mother may often be extremely ill herself, and the parents may have been physically separated while trying to be with both babies, sometimes in different hospitals. Often the birth takes place after weeks or months of problems with the pregnancy, so that the parents have already experienced an intense and exhausting medical and emotional rollercoaster by the time the babies are born and they go on to experience a nightmare scenario. A basic need of parents in counseling is often to be able to reconstruct the experience as whole and find answers to any questions about what actually happened, so that they can claim and begin to process the whole experience and all the emotions that went with it. Because so many babies died, this may be a slow and painful process and counseling can help to provide a place in which to undertake it; it is essential in enabling people to truly identify themselves as the parents of these babies and begin to address the other aspects of their grief.

2) If the babies have not died at the same time – for example, one was stillborn and the other died days later, or both were premature and one died soon after birth and the other at days or weeks old – the parents are much less likely than those of a single baby who died to have been offered or taken the opportunities needed to say hello and goodbye – seeing and holding, bringing relatives to see and hold, planning and participating in a funeral service and burial, obtaining footprints, locks of hair and other mementos, and more. This is for the same reasons that this occurs so commonly when one twin dies – the presence of a living twin, and in this case one likely to be in critical condition. Many parents have been deprived of the experience of that baby, the first one to die, and of the experience of having “my twins” together, and need very much to find creative ways to say hello to that baby and to their multiples as a group, as well as dealing with the guilt that they may feel. It is not uncommon for this to be a major need a year or two after the death of the second baby, especially if the first one died earlier in pregnancy, as a result of a painful decision to undergo selective reduction, or at some other time before birth. It is not uncommon for parents of “twins” who died to later identify themselves as the bereaved parents of triplets or more after they have been able go back into their entire experience.

For many whose babies died at not quite the same time, there was the feeling that they had “paid the price” and that it was unthinkable that the final baby would die. Even when parents are able to see and hold them at once because the deaths have occurred on the same day or within a few days, there is a crushing of the parents so great that it is very difficult to make use of the opportunities which may be present, and no one feels that they truly had enough time or privacy with the babies to do what they needed to, to last a lifetime. This is compounded by staff often being overwhelmed by so much death with no life, and there are too many accounts of babies being whisked away by staff who assure the parents that they are young and can try again. Often these losses are seen by medical staff also as unwanted failures of medical technology, and blots on the record of infertility successes. One woman, a highly-trained nurse herself, has told us how she begged to hold her last quadruplet daughter but had to watch her die on a metal table while the head obstetrical nurse told her it would be “dangerous”. Another mother whose sons died in-utero at full term was refused delivery by her doctor until the following week, because “it’s not medically advisable and it’s Memorial Day weekend”; when a partner delivered them after intervention, they were whisked away with no assistance from social work or nursing staff despite requests in advance. Many parents have real issues with both their medical treatment during the pregnancy, and at or after the birth related to the loss, and well-deserved anger at lack of understanding of their medical and emotional needs which must be addressed.

3) The importance of being able to experience and grieve for “my twins” cannot possibly be overstated – but the process above is essential in something equally important, which is being able to get to know each baby as an individual. This is something which parents of living multiples usually require many months to do after birth; parents whose babies have died have much less information to go on, and very difficult experiences – yet need to be able to say hello to each baby before being able to say goodbye. One mother, who now has living children, will never, ever forget how her firstborn triplet daughter “pee’d all over me, just like a normal baby!” during the hours that she was alive. Parents very much need the opportunity to establish and talk about their memories of each baby, during pregnancy and at or after birth if alive at that time. Grieving for more than one child simultaneously is something that no one should ever have to do but these parents are having to do it and need the opportunity to cherish each child and talk about him or her with someone who will encourage them not be overwhelmed.

4) It is beyond comprehension to be so pregnant and full of babies, with all of one’s energy directed towards loving and caring for them, and then to be home with no baby at all. Into the great chasm, the total silence, the parents face come many extreme emotions, including often strong feelings of guilt and failure. This may especially be an issue if there are no older living children, if there was a previous loss of a baby or babies, or if this loss was after infertility – and the combination of these circumstances is all too common. It is important to take the time to help people through the labyrinth of emotions they are experiencing without trying to hurry them on. One mother was very much helped both by her counselor’s encouragement to take the time to say hello to her twin sons, and everything about them and the way she had dreamed it would be; and by his encouraging her to let them say hello to her, and try to see herself with the loving eyes with which they would have seen her. The energy for her sons which she might have put into guilt, prolonged anger, bitterness and so on, became more free to use in remembering her sons and dealing with issues about another pregnancy.

5) At a time when parents expected to be going day and night caring for babies, and not need or even want to think about another pregnancy but totally focus on parenting, even being confronted with having to try again feels very painful and unfair. Those who have been involved in infertility struggles and in many cases do not yet have a living child, usually do not feel they have the “luxury” of taking a year to grieve and then letting nature take its course. They often become actively involved in trying again 2-6 months later, sometimes with frozen embryos left from the previous IVF attempts. It is very important to understand and help facilitate their decisions and efforts, based on their particular situation, rather than apply standard “formulas”. One woman in her late 30’s, who lost twins near viability after many years of infertility struggles, went to a counselor in desperation at the time of the first birthday/anniversary and was told, “How could you possibly be trying again already? – I’ve read that it’s supposed to be a year after the death of a baby, and you lost two – you should wait two years.” (Now it is two years later, they have moved into the house they always wanted, and she has not yet been able to get pregnant again, despite many attempts.)

For those whose twins or multiples were spontaneous, not the result of fertility technology, there are other difficult issues. Even if the twins were unplanned and there are two or more older children, it is very rare for the mother, especially, not to want and pursue a subsequent pregnancy; and it is not uncommon for people to have two more babies, as close together as possible, sometimes more than two, until they decide that “no amount of babies could fill the void of my twins”. The death of twins is an almost impossible note on which to voluntarily end one’s childbearing.

Often, this is a time that the father is especially anxious to pursue another pregnancy – not only to try to “make things okay” for his wife but because for many fathers, the birth of their twins marked seeing their own, biological children for the first time in their lives and falling completely in love with them and the reality of their being. One father (who had supported his wife’s infertility struggles while being ambivalent himself about fatherhood) saw his twins for the first time, tiny and dying as they were, and exclaimed, “We’ve got to have 5 more of these!!” When the twins were the first, both mothers and fathers often experience a love for their children and for each other as parents that “we never even dreamed was possible” and of course do not want to wait long, though they know they are in a difficult grieving process and will be in a difficult pregnancy as well.

Especially for those whose twins or multiples were their first children, whether after fertility treatment or not, there are several special issues. One is that they do not know what to expect medically in a subsequent pregnancy – whether the problems were because it was twins, or whether they might recur in another pregnancy as well. Another is that there is simply no illusion that a subsequent single pregnancy will somehow even the score – there is no expectation that they have the opportunity to do the same thing again, get it to turn out right this time, and have a baby who lives instead of the one who died. After many anxious months (and often, bedrest and medical procedures such as cerclage) they are indeed joyful to have a successful birth – but it is not the twins. Additionally, for those without older living children, the new baby makes incredibly vivid what they have missed, in ways that they could not possibly have imagined before. For those who are involved in fertility technology, there is the very real possibility of another multiple conception (a possibility that the others both envy and fear), which influences medical decisions in difficult ways. Those who do conceive multiples again may undergo some kind of loss again, generally have difficult pregnancies – and when successful find that their “second twins” make them miss their “first twins” all the more, while feeling blessed to have another chance and their living babies, as well as their status as the obvious mother of multiples.

It is important to understand that another successful pregnancy does not mark the end of the grieving for the twins; and it is sometimes just then, when life is supposed to be more normal, that marital problems related to differences in grieving, and now parenting, can come to the surface, and that relatives and friends can be insensitive at a vulnerable time. No matter how many other children there may be, the mother especially, for the rest of her life considers that those twins were her first children (or wherever in the order that they were) and more than ever needs to find ways to incorporate their memory into the family and to deal with depression, anxiety, or other things related to ongoing grief. “Twin encounters”, both in the media and in real life, are also a lifelong source of pain, especially if a close friend or relative has living multiples.

6) Just as with other bereaved multiple birth parents, infant loss support groups can be very helpful to those who have lost both or all of their multiples – but encouragement and followup are usually required. Like the others, these parents cannot assume that once they can manage to get to a group meeting there will be others who have been through a similar experience. Some hesitate because they do not want to be considered “the disaster case” – “Oh, that’s the one who lost three babies” (and indeed that often happens. One woman who lost twins and triplets within a year, all alive at birth, plus the miscarriage of a quadruplet and of a single baby, did have to resign herself to this with some reassurance from the group). Many have gone and found that they receive what they call “The Stare” – looks as if to say, “We don’t even want to think about what it would be like to lose two babies, or three babies, from a pregnancy, we’re barely coping with losing one.” Sometimes they are encouraged to “just think of it as ‘the twins’ or ‘the triplets’, like one baby, and then it will be easier.” The most helpful thing to almost everyone has been having another support group member who has also lost twins, and many have assisted groups in doing outreach to others. A good approach initially for the parents is to contact the group leader ahead of time to make sure of the sensitivity in that area (and to check whether there are others), and follow up with some of CLIMB’s materials if necessary.

7) Because the death of both or all babies is as catastrophic as it is, it can be even more likely for family members and friends to not know what to say or do, and to try to minimize or ignore the loss – the most common ways being to act as if they were not real babies because they were so tiny, or to imply that the mother somehow “wasn’t ready” for twins, or to set a deadline on the grief and talking about them. It’s important that counseling include the partner, even if it can only be for one session, both to assess the situation and to assure the partner that the other parent’s feelings and needs are valid; and to take a similar approach to others who may be significant, such as the mother’s mother and sisters. Sometimes the couple needs help in dealing with one or more of their own parents’ being harshly critical of their grieving and remembering.

Apart from an excellent pamphlet from England, and the several short pieces we have written or helped to write, this is the first article on this kind of loss and grieving (and difficult to write even when one does have much to say). With the prevalence of fertility technology, and also later childbearing, it is a kind that is not going away soon – in fact, most likely increasing – and we hope this is part of a process of putting it on the map so that parents’ tragedy will not be compounded by being ignored. We have been inspired by so many parents who have been able to survive emotionally and gradually go on to have a meaningful life, while always remembering their twins or triplets or more and wishing they could have been here too.

© 1995 Jean Kollantai, CLIMB, Inc.