The Death of a Baby Twin: Some Comments for Grief Counselors

There may be no experience more confusing than the death of a twin baby. Death and life come in one package…”our twins”. It is an experience faced by a most likely increasing number of families each year. In addition to all the spontaneously-occurring twins, there has been an astronomical increase in the number of multiple conceptions because of fertility technology. Despite the media images and the “miracles” – and the best efforts of parents and doctors – the reality is that 3 to 8 times as many of these babies die during pregnancy or at or after birth. Miscarriage, death in-utero, birth trauma, congenital anomalies, and Sudden Infant Death Syndrome are all more prevalent in twins, as is prematurity (generally, the only risk parents know about) and low birth weight. There are also a number of conditions unique to identical twins which are often fatal, such as twin transfusion syndrome and conjoined twinning. Childhood accidents may be more common in twins. The very fact that there are two or more babies means that anything that can happen is already at least twice as likely to affect the pair. Multiples also offer the possibility of a combination of losses in one pregnancy and birth: a triplet may be miscarried in the first or second trimester, another may die at birth from anomalies, and the survivor of SIDS. In another situation unique to multiples, some women carry one or more babies who have died for weeks or months after the death in order to try to get one or more survivors as close to term as possible.

At the same time, modern ultrasonography has meant that many or most parents know definitely of their multiples from as early as 6 or 8 weeks’ gestation, and feel very bonded to each and every baby long before birth, and to “my twins”. They have months to feel (sometimes in proportion to the challenges perceived) special and especially chosen for a unique, once-in-a-lifetime kind of parenthood, whether the twins are an “instant family” at last or an unplanned addition to a crew of siblings. Often the double-nursery is ready months ahead of time because of the prospect of bedrest and prematurity.

The collision of these realities is one that we personally have witnessed as parents and over the years in CLIMB, the Center for Loss In Multiple Birth, which grew out of Jean Kollantai’s efforts to “find someone else”. Three of four of us founding members had good pregnancies with a total of six full-term, healthy twin babies – yet only two of them came home. In a subsequent article we’d like to make some comments about the death of both or all babies in a multiple pregnancy; in this one we’d like to comment on the issues when there is at least one survivor. These are primarily directed towards loss during pregnancy or in the first year or two, but have some applicability to the death of an “older” twin.

1) After being pregnant for so long with two, having the total reality of two, and perhaps having had two alive after birth and even at home, it is not only heartwrenching but mindboggling to be faced with seeing only one looking back at you, “half of a broken set”. At the same time, the experience of the birth and death is complicated because there was more than one baby and a great deal going on, often over a long period of crisis. A basic need of the parents in counseling is to be able to reconstruct the experience as a 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. This makes it possible for parents to identify with being the bereaved parents of a baby or babies – ones who also face a great challenge in having a living baby or babies born from the same pregnancy. The most basic thing counseling can provide is a comfortable place to do this.

2) Not only is the time surrounding the birth of the twins or multiples likely to be full of crisis and “multi-realities”, the parents are very much less likely than bereaved parents of single babies to have been offered or taken the opportunities needed to say hello and goodbye to their baby or babies – seeing and holding, bringing siblings and relatives to see and hold, planning and participating in a funeral service and burial, obtaining footprints, locks of hair and other mementos, and more. A recent study in Israel showed that parents of a premie twin who had died scored much lower on a mental health scale for the first two years afterward than parents of a premie singleton who had died (then after two years, about the same) – and that of the twin parents, none had participated in their baby’s burial or the planning for it, while almost all the singleton parents had. Among CLIMB members who have given birth to a stillborn multiple (with one or more survivors), it seems the majority did not have the opportunity, for a variety of reasons, to see or hold their baby who died. (Those whose baby died after birth are somewhat more likely to have had “the right things” done at the time, but then as soon as the baby has been buried, the survivor is treated as if he was a single baby, all there had ever been.)

Therefore, parents in counseling are likely to need creative ways of dealing with not having had the basic opportunities. This is true not only for the reasons it would be for any parent, plus the need to process taking home a lesser number of babies, but because of the significance of “my twins”. Very, very few have experienced seeing their twins together, holding them at the same time, just once, and we have seen that many are at first more preoccupied with experiencing “my twins”, somehow getting them together and being recognized as the parents of twins, than with grieving for the twin who died – it’s hard to say good-bye to “my twins” without first saying hello to them. With support, parents have found creative ways to do this, with things like artists’ rendering of babies who have died having some special applicability here.

3) The timing and pace of the grieving process may be different from what it would be for a singleton baby, when there is a surviving multiple. This is especially true for the many whose survivors are very tiny, fragile and hospitalized, then home on a monitor and medications. The parents of even the healthiest survivors may be preoccupied with caring for him and holding their breath that he will not be a victim of SIDS – and all parents are under tremendous internal and external pressure to “focus on the living baby”, consider themselves lucky, consider the one who died at best a nice extra that didn’t work out, and all the other things we are often told. Many are told that their grieving would “hurt” the living baby. While many are actively grieving despite these pressures and need support for doing so more openly, it is also very common for the acute stage of grieving to begin just as things are getting a little more normal, with the survivor a little older and less demanding. The first birthday/anniversary is a time when grief that has not surfaced yet is very likely to do so, as is the birth of a subsequent baby. (We’ve also seen that if the grief is not dealt with then, it may surface later in acute depression, anxiety attacks, marital and parenting problems.) It is, however, still constantly interrupted by the demands of the living baby and the pressures to be “up”, which in turn can make suddenly focusing on the baby who died and the grief seem scary. There is also a great variability from day to day (or hour to hour) in the focus on one or the other baby. Counselors must be very careful not to judge a parent’s reactions or the amount or kind of grief being shown, or not shown, by the time since the death, or to judge parents by their preoccupation with the living or the dead baby.

4) PenParents, Inc., founder Maribeth Doerr, who worked with us on research on marriage after the death of a multiple birth baby, commented that in almost every marriage or relationship she observed, one partner (usually the mother, though not always) was preoccupied with the baby who had died, and with “the twins”, and the other (usually the father) was focused exclusively on the living baby. Multiple birth loss with a survivor offers the possibility of a parent denying that there even was a baby who died, and of conflict over whether there “should” be grief. Marriages often break up after the surviving multiple is a little older and a subsequent baby has been born, after these conflicts have exacerbated any preexisting differences. It is important that counseling include the partner, even if it can be only for one session, both to assess the situation and to assure the partner that the other parent’s feelings and needs are valid. Other close relatives, especially the mother’s mother and sisters (if any), may be very significant as well and the same approach is recommended when necessary.

5) Many parents have deep concerns about their surviving child and these may be a motivation for seeking counseling. These may be questions about whether the baby or child misses his twin, the possible effects of the parents’ grieving on the baby, dealing with birthdays, milestones, and everyday happenings, and whether, when, and how to talk to the child about their twin. Some tend to focus on these issues as much as on their own grief; and while not enough is known about the loss the surviving baby may feel, it is also possible for parents to perhaps project their own grief on the baby (“He cries every day at that time because that’s the time his brother died”, etc.) For the many whose survivor has been diagnosed with cerebral palsy or any of the other handicaps that may result from the same events that caused the death of the twin, the handicap is also a major source of grief, as well as stress and potential marital problems. Extreme fear for even the healthiest survivor is common, and bonding issues are always present in some form; “overprotectiveness” is often an issue. Adult survivors whose families never openly grieved or discussed the death of the twin have consistently told us that their mothers remained “stuck in the day that it happened” and not bonded to them; and their fathers emotionally traumatized and not knowing what to do. Self-confidence as a parent is a major issue, especially for those who went through years of infertility and brought home one tiny, fragile, often damaged survivor, (sometimes after selective reduction earlier).

At the same time, we believe that while it is important to address these issues in counseling (especially since they cannot be in a standard infant loss support group, even if the parents do attend), it is essential not to let them take over the counseling. We have found that when parents are able to get down to the hard business of grieving for the baby who died, and get comfortable with being in a complex grieving process, they are able to handle many of the ongoing survivor issues and situations in a healthy way spontaneously. No amount of talking about the survivor (another version of what we are so often told to do, “focus on the living baby”) can take the place of grieving and making use of any opportunity to do so. Counselors can be of great help in encouraging/permitting healthy ways to grieve in the time and space available, in private sessions and in everyday life.

Also, counselors can encourage parents to seek out and try to make use of infant loss support groups. While they may not meet all of the needs (i.e., around survivor issues), when parents have some “twin-specific” support from other sources, such as CLIMB, a standard group can be invaluable on the basic grieving issues (and the parents may over time meet others with multiple birth losses). We recommend that parents contact the group leader ahead of coming to their first meeting to get a feel for the group’s sensitivity to their kind of loss, and follow up with some of our materials if desired. Identifying themselves as bereaved parents and participating in a group can be a major step with long-term benefits for many but usually requires encouragement and follow-up.

6) Sensitivity to some special issues is essential. A mother who has been urged to go to counseling and has made the call, should not be told, “You can bring your baby this one time if you really have to, but absolutely not after that” (with the result that she will not go at all). Being able to feel comfortable leaving a surviving baby should be a goal, not a prerequisite, of the counseling process. Flexibility about session times may be necessary because of the father or another close relative being needed to care for the survivor, especially if fragile.

With supertwin births becoming much more frequent because of fertility technology, some special sensitivity is also needed with those who are grieving for a baby(s) while caring for two, three, or more others, or grieving for two, three, four, or more while caring for a survivor, in both the emotional and practical aspects of their situation, which seem to them and justly so to be “off the map”. These mothers tend to be very consumed physically and emotionally caring for a very tiny sole survivor, or for multiple tiny survivors, along with often having a subsequent child or more, along with pressure from their husband to be “ok” to care for the children, some of them with ongoing special needs. Many begin the active grieving process 2, 3, or more years after their loss when they can no longer put it off, and are significantly depressed.

There is of course much more that can be said, but we hope this is food for further understanding of situations we ourselves would never have begun to understand without having had to live them each day. Besides assisting the mental health and emotional healing of the parents, the surviving twin, and the entire family, understanding this kind of experience is an opportunity to learn more about grief for a baby. We have had to find, the hard way, that truly no one replaces anyone – not even a genetically identical person or people born also to you at exactly the same time. While this is a tough lesson, it is a profound one.

* when used in this article, also refers to one or two triplets, or more than one (but not all) quadruplets, quintuplets, or higher