Multi-realities: coping with the impacts of death in a multiple birth
Center for Loss In Multiple Birth (CLIMB), Inc.
September 30, 1999
While society pays increased attention to the joys and challenges of multiple births, a significant number of families have collided with the most dark and problematic side of “the world of multiples”: the death of one or more, both or all of their babies at some time during pregnancy, at birth, in infancy or childhood. After finding myself back in my hospital room after a fullterm, uneventful pregnancy with fraternal twin boys holding one of them in each arm – one alive, and one equally handsome and wellgrown, but dead – I began to search for what I imagined would be one or two others who had experienced this shocking, bittersweet, often agonizing kind of parenthood. I couldn’t have known yet that the oncoming boom in fertility technology might mean that the risks for multiples could not possibly decrease as much as the numbers of multiple conceptions could increase, at least in the U.S., and that prematurity was only one of those risks.
This led to the founding of CLIMB, Inc., the Center for Loss In Multiple Birth. In the 15 years since, I have spent full time and a bit more in contact with as many as 8-10,000 families throughout the United States, Canada and beyond who have experienced the death of one or both of their twins, or one or more or all of their triplets or other higher order multiples at any time from conception through childhood, as well as placing them in contact with each other and developing our journal and other resources for parents, caregivers, and multiples organizations. Some have witnessed the deaths of both or all of their multiples after years of infertility and may or may not ever have living children; others may have two or three of more survivors but wonder if the day will come that they don’t cry for the one who died. Some have brought their babies home only to experience SIDS, sudden illness, or an accident. Socioeconomic, cultural and personal backgrounds are very diverse, as are people’s coping styles and ability to be and to keep in touch with the group and to speak of their experience. But I think it is safe to say the following in regard to loss during pregnancy, birth and infancy:
· The impacts of multiple birth loss are severe and ongoing over a period of years, because of the death of two or more babies and⁄or the realities of grieving for a multiple while raising one or more survivors, coupled with the general lack of understanding and appropriate support. Many parents also face the additional ongoing impacts of one or more handicapped or medically fragile survivors.
· The degree of bonding which ultrasonography makes possible contributes to the severity and duration of the impacts. To those pregnant with twins or triplets after years of infertility, 21 weeks IS really close to having their children, and many have made complete preparations in anticipation. For all, especially after the period of prematurity, it is impossible to believe that these babies would not both or all be here.
· The positive impact on the grieving process of sensitive, knowledgeable care at the time of the loss and after by hospital and other professionals cannot possibly be underestimated, likewise the adverse impact of treatment which is insensitive or does not take into consideration the entire situation. The opportunity to have concrete experiences with each and all of the babies and do various things that are necessary for all bereaved parents, adapted to complicated circumstances, is even more important here. The lack of these opportunities imposes a hurdle to healing extremely difficult for many to overcome. The future emotional health of any survivors, as well as that of the parents and any subsequentor current children, is directly at stake (yet those who are caregivers at the time are not usually in a position to see how things will reverberate in a family over 3&-4 years).
· Isolation, combined with often being considered “rare,” is detrimental to parents’ becoming mobilized to do what is necessary to begin to cope and heal, especially when coupled with the media and other attention focused on only successful multiple births.
· Many feel betrayed by technology which often helped to conceive their children and manage the pregnancy but was not ultimately enough to have them all here safely; as well as by a general lack of statistics and of information about specific risks, especially for identicals, and the uneven level of care given certain types of pregnancies. (Nowhere is this more evident than in the management of monoamniotic pregnancies, at least in the U.S., as well as those with twin transfusion syndrome.) Many feel that their twin or triplet pregnancy was routinized by the success of some very high order pregnancies.
· Parents’ medical experiences are integral to how their loss is experienced, and relevant medical information after the loss is essential to being able to process it all mentally and emotionally.
· Any ambivalence or guilt about the decision to undergo (or not undergo) multifetal pregnancy reduction is magnified if there is death later of a remaining baby⁄s. There is also a significant subgroup with longterm emotional aftermath of MFPR despite a “successful” outcome.
· We find that especially parents with a survivor are at risk for clinical depression, difficulties with anxiety and with parenting, and marital problems – even more in the 3-4 year timeframe than in the immediate one.
· Everything is underscored completely by the preciousness and irreplaceability of multiples. People grieve intensely for “my twins” or supertwins and their status as the parent of living multiples, or an intact set – and do not expect to have them again “next year”, or have the illusion that their next child will even the score for what was lost. (Those who do have multiples again find themselves even more aware of what they are also missing.) Most feel that they have squandered an incredible once-in-a-lifetime opportunity for which they thought they had been specially chosen. Direct and indirect encounters with intact sets of living multiples, especially of the same number and type, are extraordinarily painful and problematic for most even many years after the loss.
Appropriate medical information, informed care and the opportunity to know that their feelings are normal and realities sadly not rare enable parents to recognize the things that they need to do to be actively coping and adapting to an irreparable loss, and ultimately incorporate their multiple baby or babies who have died into their personal experience and perspective, and into the life of their family. Sensitive professional counseling is also indispensable to many, especially in regard to some of the “sticking points” and additional issues which arise. With time and this kind of support, the babies’ memories become part of lives that are still satisfying, even though we will always wish that things had turned out differently. It is a tough, endlessly complicated and intensely demanding process emotionally, intellectually, physically and spiritually. One of the many unofficial mottos of our group is that ANYthing in regards to raising both or all of them would have been easier than this.
These are some of the primary groups specific to the needs of bereaved multiple birth parents, and which may also be helpful to medical and other caregivers; some of these contain additional resource listings. (With the additional resources, as well as internet resources generally in relation to multiple birth loss, the usual net cautions apply.)
(printed in Iatrogenic Multiple Pregnancy: Clinical Implications, Blickstein and Keith, 1999)