Twin and Multiple Birth Loss was established over five years ago by Jan Liddell and Rosemary Smart to support families who had suffered a loss in multiple birth.
Today, Twin and Multiple Birth Loss supports families all over New Zealand who have lost one or more or all of their twins, triplets, or more, in a multiple birth situation from early pregnancy through to childhood and beyond, including the loss of a twin sibling in adulthood. The death of one or more, both or all twins, triplets or higher multiples is sadly a fact of life. With the increase in multiple conceptions from fertility technology--and given the risks for multiples, even twins-this is not likely to change. When the loss occurs around birth, the experiences of many parents have shown that there are common points that are extremely important in all situations. When they are understood, this understanding can be applied sensitively and with confidence to each specific, often unique situation. These are some of the more important points:
It is essential to acknowledge all the multiples, no matter how many have died and how many have lived, or the timing of the death, even if months before. Triplets are three babies who have each died. Not one collective baby. A healthy surviving baby is still one of the twins; and as one person put it, "Two out of three is bad when it's your baby who died."
The presence of surviving (often tenuously) babies and the overwhelming nature of the loss of both or all the babies can create confusion. Parents may often have difficulty focusing on more than one aspect of their situation--it's very difficult to focus on all of it when it is so complicated and with so much going on with each baby. Parents may not be able to ex-press their overwhelming grief. It is crucial for staff to empathize with the entire situation, and not to judge parents for their preoccupation with a living or dead multiple(s). Staff should play an even more active role in helping parents create memories that will facilitate their healthy grieving when they are able to get to it.
An opportunity to see and hold each baby is essential. Each baby should be seen and held for as long as desired and more than once if desired, regardless of the condition of the baby or the mother, or of any survivors. This should be natural and expected, not something parents are asked about doing in a way that encourages them to say no. If one or more babies does not look "normal", the importance of this can be realistically but gently explained--remembering that almost all parents focus on the beauty of their child, not the imperfections, and that what they imagine is usually much worse than what is. Not seeing the premature, stillborn twin while the other baby is critical in the unit will be deeply regretted later, regardless of the outcome with the other twin, and will not "spare" the parents or help them "focus on the living baby."
Most parents would give the world later for an opportunity to have held their babies together, or to have even seen them together. After months of multiple pregnancy, this will be their only chance to do so, ever. If at all possible, arrangements should be made so this can happen, prior to and/or after the death. Photos of such an event are also invaluable in later helping any survivors to understand concretely the story of their birth and the loss of their sibling(s). Photos of each and all of the babies is essential.
Crib cards, and labeling of survivors are important. Many parents are very offended when "Twin A" suddenly becomes "Baby X". Others are hurt at seeing "Twin A" without an "B". What is important is to ask what the parents prefer. Most parents are very hurt when, just hours after the death of a triplet, everyone is calling the survivors "twins", or similarly, acting as if a twin who died never existed. Survivors can be referred to as a surviving twin, surviving triplets, etc. Any acknowledgment that a baby is actually a twin or triplet is usually deeply appreciated by the parents.
Assessing zygosity: Zygosity is often assumed, or assumed not to be important, but it is very important for parents to know later in order to help them assess the probable causes and risks in a sub-sequent pregnancy. It helps parents know how to "picture" their babies, and also impacts on issues in raising a survivor. If there is any question as to zygosity of same-sex twins, testing should be done to the extent necessary, as it will usually not be possible later.
The importance of baptism, or other ceremonies. Many parents have deeply appreciated the opportunity for baptism when both twins or all triplets have died, feeling that the ceremony was one of the few things they could do for their children. Those with surviving babies have deeply appreciated having a service that combines a baptism for the living baby, or babies, with a memorial for the baby or babies who died. Some have been able to arrange a service at home. Parents may not think of these ceremonies as an "okay" option unless suggested and encouraged by the hospital staff.
Mementos. All other mementos--locks of hair, footprints and handprints, caps, crib cards, fetal death certificates, seashells that were used for each baby's water at the baptism, blankets, ID bracelets are valued, and their obtaining them must not be overlooked even when there is a crisis with another baby, or when there are multiple survivors going home.
Siblings. Even the youngest siblings are often very involved with the pregnancy and "my twins", and have been sad and angry later if they did not have an opportunity to see, and say hello and goodbye to the baby or babies who died. This contact also helps siblings in processing the reality of going home with fewer or no babies. No matter how overwhelming the situation may seem to adults, it is important to make these opportunities available to children in the family as well. Later, it has a great impact on how naturally the loss can be talked about within the family, and the ways in which the baby or babies can be remembered.
"Twin Encounters." Parents have found themselves and their tiny survivor surrounded over the weeks in the unit by 4, 5 or more sets of twins who are expected to go home. This is normally ex-tremely painful, especially when relatives are visiting and fussing over the sets of twins. It is imperative that staff recognize the difficulties of this situation and consider the parents' feelings, and provide for physical separation to the extent possible. As with many things, it is a good idea to ask the parents what they would like to do.
Decisions are not easier to make. The decision to discontinue life support for a twin, for example, is not made "easier" by the presence of a healthy survivor, which in fact, creates additional wrenching issues. No decision is easy to make when the parents are exhausted from relating to the realities and crises of multiple babies.
The feeling of separate babies. Parents often feel that they had two or more babies at once, not twins or triplets or more, because there are so many separate realities and physical separations. Anything that can be done to assist the parents in seeing and holding both or all the babies at once before and after any deaths, is valuable for this reason as well. When one or more babies is hospitalized for a long period of time, anything that can be done to "integrate" the family is also extremely valuable. One mother's healthy survivor had her own little crib in the NICU for her first six months, so that her mother could be with the dying twin as well as care for the healthy one, and be with both her twins. It is very important to facilitate parents' spending time with a baby who is terminal, even if it means their being away from the survivor(s) for that amount of time. However, when both or all babies are very premature or sick, it is important to keep the amount of time spent with each relatively equal--it is not uncommon for a "better" one to die and a sicker one to pull through, leaving regrets that little time was spent with one who did die, and creating bonding difficulties with the survivor(s).
The "limbo" situation and fear for any survivors. Many parents simply do not know for quite some time whether one or more of the multiples will live or die, and what the ultimate situation will be. Many fear for their survivor(s) possibly being handicapped. Even the parents of the healthiest survivors fear what may happen, now that they have seen that baby's twin die. It is important to realize that the overwhelming nature of the experience creates very real issues and difficulties with bonding with any living babies. One of the most basic issues is: "the more I love the one(s) who is living, the more painful will be the loss of the other(s), and the more fear there will be for this one too". It is important to recognize this while supporting attempts to bond (i.e., nursing).
The meaning of homecoming. For those who have lost both or all babies, their own home-coming is the recognition of that fact, and the final leaving of the place where people saw and perhaps knew their babies. "The silence was deafening," after homecoming is a typical reaction. For those who are going home to a survivor after other(s) had died in the unit, the realities are in some ways similar. For those who are bringing home one or more survivors, it is essential to realize that homecoming will not be the happy, "lucky" day that it may be for those bringing home a singleton baby. It is the full recognition that one or more of the multiples has died, and having to cope with that outside the "safe," knowing world of the hospital. For many it means caring for a tiny, fragile baby (perhaps as a first-time parent), and for some, two or more tiny survivors--while also grieving for the baby or babies who died and for "my twins" or multiples, and the loss of the experience that should have been. We have found that whatever has not yet been processed tends to surface at this time or as soon as there is a more "normal" situation with any survivors. It is a time of full grief, guilt, anger or blame, marital strains, difficulties with relatives and friends, feelings of vulnerability, confusion--just at the time when everyone is expecting the parents to be "over it" and acting normally. We have also found that the more parents are able to be supported in their grieving process before homecoming, the more joyous a time it can be for those with survivors--and the less traumatic for those who do not have survivors. It is also very helpful for staff to make themselves available later when parents are able to go back to the hospital, review records, and talk to people who knew the babies, in order to reconstruct the experience as a whole and find answers to remaining questions.
Multi-babies mean multi-realities. A baby may need major surgery on the day that his twin brother is being buried. A father may be in a Level III NICU with the sicker baby, away from the mother and the other sick twin. A mother may be giving birth to the third triplet while the first is dying. A family may be making a decision about terminating life support at the same time they are preparing to bring another baby home another may still be in the unit. It is essential to remember that parents who are experiencing multi-realities will respond and react to any one aspect of them differently from a parent for whom that event (a surgery, a death, a homecoming or other event) is the only reality. By always acknowledging the whole situation and being there with parents in a caring way, staff can help parents who are dealing simultaneously with experiences that would be considered overwhelming if a family were to experience them separately over a period of several years. Parents have truly appreci-ated staff who have asserted themselves and expected to be involved, at a time when the parents could not even ask for help and didn't dare expect understanding. When some "twin-specific" suggestions and encouragement are added, the family has the best possible groundwork for being able to later process and heal from their experience, and decrease the mental health risks to any surviving or subsequent children, as well as to themselves.
Twin and Multiple Birth Loss aims to support these families by providing contact with others who have had a similar experiences, through our meetings, phone support and through our magazine Hearts & Wings. We welcome families and others interested in the work of our group to contact us. It doesn't matter if the loss was recent or a long time ago, perhaps even years have passed. It is a comfort to break the isolation and discover others who have lost twins also.
While this article covers loss around birth, Twin and Multiple Birth Loss covers loss at all ages and stages of life. Jan and Rosemary are always available to speak with any who would like further information or help for the situation they are involved in. More information is available on their web site at www.twinloss.org.nz
We gratefully acknowledge CLIMB (Center for Loss in Multiple Birth) based in the US for their article Multiple Birth Loss and the Hospital Caregiver by Jean Kollantai and Lisa Fleischer from which a great portion of this article has been taken. The full article can be obtained through their web site at www.climb-support.org
