Selective Reduction: Food for Thought
Over the years that our organization, the Center for Loss In Multiple Birth (CLIMB), Inc. has been hearing the experiences of countless bereaved parents of twins and higher multiples, we have heard from an increasing number who have undergone the selective reduction of one or more of their potential babies, or chosen not to, with or without later loss, as well as from many considering selective reduction. Some of these have included:
1) a CLIMB member who, after many years of infertility, conceived 4 babies. Devoutly religious, she reduced to two for the sake of the babies; they were born at 26 weeks, one dying at 4 months old and the other blind and developmentally delayed, now age 10 and the family’s only living child.
2) another “CLIMBer” who revealed that her “twins”, conceived after 10 years of infertility and in-vitro fertilization, had actually been 3. She made the decision to reduce to two; then one of the remaining babies died in-utero and the other was born at 26 weeks and died three weeks later. She is more recently the mother also of a child whose twin died in-utero.
3) a member who conceived her second pregnancy with IVF, then learned that it was 3. She is partially disabled from an accident, and gave birth to her first child prematurely at 30 weeks; therefore she was anxious to reduce to one but had difficulty finding a physician who would do this. Then one baby died in-utero, and she reduced to one at 16 weeks, with a choice between a genetically normal girl and boy both in good positions. Her daughter was born safely near term.
4) another member whose pregnancy, after IVF, was reduced successfully to two, who were born prematurely and died after errors in dental procedures on the mother several months later. She later gave birth to another child.
5) a woman who tried to conceive a second child through fertility technology, and learned that she had conceived 8 – she “held out” for 4, who were born healthy at 32 weeks; and another who reduced from 6 to 3 and after the birth of the first living set of sextuplets in the U.S., was also tormented by feeling “I could have done 6, I know it.”
6) a woman (currently a cancer patient wishing to clear things up) who, in part because of her husband’s mental illness, reduced from 3 to two, who were born prematurely and one died, 5 years ago.
7) a CLIMBer whose initial call to us was just before the diagnosis of the death of her second remaining baby. After conceiving 5 after IVF, she had reduced to two, then one had died in-utero the week before at 20+ weeks. She has since given birth to 35-week triplets, as has another member who had reduced from 6 to two who were born prematurely and died.
8) another member who reduced her first pregnancy from 5 to two, of whom one died in-utero at 20 weeks and the other was born healthy at 34 weeks; and one whose twin baby was stillborn at term, after reduction from 3 earlier.
9) a now-member who conceived 4 after several years of trying – “the first time anyone at our clinic has conceived four with pergonal”. She chose to reduce to two and was told that there was a 10-15% chance of losing them up to about 11 weeks later, due possibly to ruptured membranes as the babies grew. Everything went well until they were born suddenly and died exactly 11 weeks later. She has since given birth to three singleton children, several of them prematurely.
10) a woman in the Midwest who (still unknown to her Catholic family, or anyone but her husband and doctor) had reduced from 4 to two and had two healthy daughters, now age 2. She describes herself as having a lot of difficulty at times, and knows others (who like herself are medical professionals).
11) a woman who reduced from 3 to two, then learned that one had Down Syndrome and underwent another reduction to one, who was born safely.
12) a member who after many years of infertility, reluctantly reduced from 4 to 3, who were born prematurely and died; and in her “last” IVF try at 39, despite implanting 3, conceived 4 and hoped to refuse reduction until learning that two were monoamniotic with one anencephalic. The remaining two babies were born at 27 weeks after complete hospitalization since 20 weeks, and came home on oxygen.
13) a member who refused reduction from 4, then underwent it after being told that two had congenital problems; the remaining babies were born safely and she felt unable, several years later, to accept what had happened.
14) a member who despite caution with fertility drugs (she was already the mother of somewhat premature twins) conceived 6 and continues to struggle with guilt that she even had to consider selective reduction, while not at all judging those who do after finding themselves in such a situation. Two died in the first trimester, then one in the second and one at birth of a congenital anomaly diagnosed around the same time; one of the others barely survived surgery for another congenital condition, after they were born at 30 weeks, two years ago.
15) two members who reduced from 4 to two, who were born prematurely and died; then conceived triplets, did not reduce, and lost them all to prematurity; then had a successful pregnancy with a single baby (one, after several IVF’s with a single egg).
16) a woman with 5-year-old IVF twins very much wanting another child, and despite efforts not to, conceiving 4. She chose to reduce to two (after her mother advised her, “It wasn’t God alone who got you pregnant!”) and they were born and died at 26 weeks; she did not regret her decision, only falling into the percentage who experience subsequent loss. She tried again 8 or 9 times, insisting on using only two blastocysts, and recently had twins near term.
17) a triplets club president , and others in the club, who reduced from 4 to 3 two years ago and are very vocal about feeling “set up”.
18) several members who became pregnant with 7 and reduced to two, who were born very prematurely with one stillborn, the other living but with major developmental delays.
19) a couple who are raising their son and daughter, now age 7, and feel that they are very grateful to have their twins yet always wonder what their third child would have been like.
20) a father who wrote in an e-mail, “We had selective reduction today, from 4 to twins. It really seemed like the right thing to do – but what we didn’t know was that we’d have to watch.”
21) several women – one of them a single mother by choice – who reduced from 4 to two, and now that their children are toddlers and they do not have the option of another pregnancy, feel they are experiencing major aftermath issues.
22) a member who decided to reduce from 4 to two and did so despite her doctor’s refusal to check the babies for any kind of condition that would determine the choice. Her two babies were born at 28 weeks after the in-utero death of one, who could then be seen to have had major congenital abnormalities; the survivor spent 4 months on the hospital.
23) a member who, with 4 other kids, became pregnant with what turned out to be identical triplet boys, growing well and in good positions (though the mother herself was quite ill). Her doctor was negative about the risks and transferred her to a specialist who was even more negative, and offered no information or support on pregnancy or parenting. He persuaded her to reduce to two (while not sending her to a center where infertility patients would normally go for this), then at the last minute another specialist arrived and said it could not be done because of possible damage to the other babies through a probably shared placenta. Sick and under pressure, she terminated the pregnancy just before 20 weeks, 4 years ago.
Also, many who have lost their twins, triplets or more after infertility (with or without selective reduction) want to “try again” as soon as possible, and identify selective reduction as their most pressing issue and greatest fear. They say that after experiencing the deaths of their children, they dread being urged (by themselves or others) to reduce should they conceive higher multiples next time; and they equally fear being so conservative in their treatment, to avoid the possibility of multiples, that they do not conceive at all. A number have said that they would do it or do it again this time, given the outcome last time; it is a matter of at what point (3? 4?) and then making efforts not to conceive that many.
While our contacts with these and other people do not make us experts, and the people themselves are those who for the most part contacted us and are not necessarily representative of the whole, there are some comments we feel can be made:
· With the great majority of triplet or even higher multiple conceptions being after Assisted Reproduction Technology (ART), parents involved in reduction decisions are even more likely than the general population of those pregnant with multiples to have undergone years of expensive, invasive treatments in order to conceive. The multiples are generally their first children and first experience of parenthood, after months or years of hopes, dreams and efforts. These are people who, as one person put it, are the last to take even the tiniest viable embryo casually. It can be important for them later to remind themselves that their decisions were made out of love for their children, and based on how much they wanted them, not the opposite. A psychologist recently conducted a survey with some members of our group, and wrote an article delineating the two lines of thought and feeling which are associated with the decision to reduce – or the decision not to reduce – as being the most responsible and loving one (see “The Emotional Aspects of Assisted Reproductive Technology”, by Deborah Davis, PhD.)
· Comprehensive statistics on the outcomes of twin and higher multiple conceptions, whether after ART or not, are not kept in the U.S.; and the population studies and other information which do exist are not specific enough to distinguish the different types of multiple birth loss that occur. There is no basis on which to know whether conceiving multiples, and the decision to reduce or not to reduce, is more likely to result in having at least one living child, or in losing both or all of the babies or potential babies and having to start completely over under the most difficult circumstances. Many parents feel that for this and other reasons, they were not counselled adequately about the risks when undergoing fertility treatment, and now, of continuing the pregnancy as-is if there are 5 or fewer potential babies (clearly, 6 or more present risks that are not acceptable for many or most, though that does not mean that everyone with that many will decide to reduce).
At the same time, the physician – usually a “fertility specialist” – who is responsible for the conception hands off the patient to the doctor of the patient’s choosing in the first trimester or soon after and often is not aware of the course or outcome of the pregnancy, medically or otherwise. There are financial and emotional pressures on the parents and on the physician for them to conceive, and to believe that then the battle has been won. Some parents have been told, “We’ll implant 7 and maybe you’ll be really lucky and have twin or triplets”. Others are given ovulation-inducing drugs and not monitored or given options if the cycle produces a high number of follicles.
At the same time, parents along with the rest of the public are bombarded with media and other images of cute, healthy multiples, photos of triplets or quads coming home, families with two sets of multiples and such, and – after the shock of being able to conceive at all, let alone more than one, wears off – wonder why this can’t be them, a complete and special family at last…but how many?
Thus parents face an extremely confusing situation in evaluating the risks and realities, and any information which they receive will normally depend completely on what they happen to hear in the media and from others they may meet or know, and on what they are told by their physician, which in turn will depend on what he or she is aware of and how he chooses to interpret it.
· Many have felt they were not adequately counselled on the risks of the procedure itself, or the fact that it is not a guarantee of the remaining babies being born safely and healthy. Some have been quoted rates of later loss that are not realistic for any twin pregnancy. While the reluctance of many physicians to reduce to one may keep the rate of continuing pregnancies up (because of the risk of the so-called vanishing twin), the risks for twins are by most estimates 3-8 or more times that of a singleton pregnancy. There are also issues about whether the greater the original number of embryos, the greater the likelihood of the remaining babies being born prematurely (though not nearly as much so than if there had not been reduction); and whether the benefit outweighs the risks for reduction from 3 to two. The occurrence of many identical, monozygotic pairs within triplet or quads is complicating the decisions that people are having to make, since the majority share a placenta and the death of one may affect the other and cause disabilities; parents are confronted with the decision of reducing not only one but two triplets or quads, or not and having an even higher risk pregnancy.
All of this is compounded by what we call “the Septuplet Syndrome”, which can be summarized as, “If that lady in Iowa can have 7, why can’t I have two?” – and in fact a routinization of twin and even triplet pregnancies by some caregivers as well as the public seems to have increased the risks. Its counterpart for those inclined to refuse reduction is, “If that lady in Iowa can have 7, I can have 4 or 5”.
Along with the routinization of twin and triplet pregnancies, even if they are after reduction, many have felt that there is a lack of counselling on the symptoms of premature labor, and a great variability in the way they are treated if they do occur, as well as an underestimation of the risks past prematurity.
· Many have felt that they have paid the price – made a very difficult decision for the sake of their babies, and even had to select the potential baby or babies to terminate and watch the procedure – only to experience the death of one or more of the remaining babies later. In situations like that, for example, of the mother in 1) above, one would think that the outcome of the pregnancy would show or prove to the parents that they did the right thing, given that only one child barely made it as it is – but she and many others cannot help feeling that the premature birth and death had occurred because of their decision to reduce, not medically, but that they were being punished, and if they had left it alone it might have been okay. She couldn’t help feeling this way, no matter what she rationally “knew”.
Similarly, the mother in 2) above wrote: “In the wake of these tragedies and a year of mourning, rational and irrational questions still run through my mind. Was it a healthier fetus that was terminated? Could that baby have made it though the others didn’t? Was I somehow being punished for the reduction through the loss of the other babies? Did by-products of termination contribute to the complications that followed (our doctors speculate that may have been possible)? Does reduction actually improve the chances for the remaining babies? Does the course of the pregnancy still resemble a triplet or higher multiple situation even after the reduction? There are gray areas between success and failure, and those gray areas continue to haunt me in the middle of the night.”
We have seen that the death of a baby or babies inevitably triggers guilt, anger and confusion that are part of grief and the grieving process. When the loss is in a pregnancy that involved selective reduction earlier, it adds another layer of guilt, anger and “what-if’s”, especially since the death of a baby makes the death of the embryo(s) earlier much more vivid to many (something we have seen also in multiple pregnancies where one has been miscarried). This seems especially true for those who were not counselled much about the risks not only of the procedure but of later loss in a “twin” pregnancy, since they then tend to feel singled out.
· It is important to note that many of the same feelings are experienced by those who for whatever reason (and despite whatever their convictions about choice for others) chose not to reduce to two or 3 from 4 or 5, often despite substantial pressure to do so. For many of them, their decision was based not so much on religious or moral beliefs that made reduction impossible, but the feeling of, “Not to my babies – !” and, “After trying for so long to have A baby, how could we terminate even one of them”. Those who have spoken to us have sometimes been tortured by the idea that if only they had reduced, they would have healthy twins instead of one or no survivors, or survivors who are all severely handicapped. Like the others, they are unable to ever know what would have happened if they had chosen differently – or even to know what a “good” outcome would have been, given the number of potential babies that they did conceive. Like the others, they have often felt set up by the lack of realistic information-*#45;they feel that while they might have made the same decision again, they could live with it all better had it been a truly informed choice.
· Those who reduce and do go on to have the remaining two, 3 or (as in 5) above) 4 babies safely have very vivid reminders of those who are not there. While they know that their decision might be the same were they to be back at that point, their children and their birthdays and their day-to-day happenings and milestones make it very difficult if not impossible not to think of the other or others and experience periods of difficulties, perhaps related to other circumstances at the time. While it may be hard for others to imagine, this is also true of many of those who have 3 or 4 living children but miss one who was miscarried earlier. While others may think they are “greedy” or somehow ungrateful, it may be human nature among people who love and want their children, no matter what they “know”. It is exacerbated by media accounts of and fascination with larger multiples, especially septuplets and sextuplets, the seeming do-ability of it, and the exclusion of all the other realities. Many feel that it is very unfair that if those who (from their point of view) gamble against the odds with the lives of all their babies happen to succeed, they’re glorified on magazine covers and throughout society – while they, who did what they believed was the most responsible and realistic thing despite its being very distasteful, usually cannot even talk about it with their own friends and relatives.
· While the difficulties seem to be more likely among those who made their decision on account of the risks to the babies of pregnancy as opposed to the quality of life issues in regard to raising three, four or more babies at once (some possibly with handicaps), they also occur among others whose decisions were also based on such issues. The woman in 3) above truly wanted only one baby, and was not attached at all to the idea of “twins”, as well as knowing that in her situation it would be far too difficult to care for more than one even if they did make it past prematurity; but (unlike her husband, who did not want the reduction but when the survivor was born said, “This was best!”) experienced great grief while caring for her baby – sometimes triggered by things like the shape of her toes – for her brother and “my son” (her older child is also a girl and the survivor was chosen because the statistics on prematurity were better for females).
Out of all the different experiences we have encountered, several commonalities stand out that are worth noting before making some conclusions:
·Almost without exception, everyone has felt that they were not counselled adequately (or in some cases at all) about the risk of conceiving higher order multiples, at a time when it was difficult to imagine conceiving even one. No one that we know was screened to determine whether they were someone who would not reduce.
· Without exception, no one has been counselled about the possible emotional impacts or aftermath of selective reduction, seemingly on a theory that mentioning it somehow makes it more likely. Few have felt that the counselling given on the medical risks of reduction vs. continuing as-is was adequate. Those who did contact their doctor involved in the reduction with emotional aftermath were basically told, “Everyone else seems fine.” One mother was invited to come back to the clinic for counselling, which would have meant an out-of-state plane trip with two tiny newborns.
· In recent years, there has been a mushrooming in the number of multiple multiple pregnancies, mothers with more than one multiple pregnancy, sometimes with loss in one or more of them. Yet out of everyone we have known or known of, no one has undergone selective reduction more than once, with the sole exception the woman in 12) above, who implanted 3 the second time but had late-splitting monoamniotics and thus 4 (and still wished to refuse reduction despite her earlier experience, until learning of the anencephaly). A number of women who have conceived 3 after previously losing twins reduced from 4 or more, chose not to reduce. One such mother cried with joy when the sonogram showed “only” 3, to the bemusement of her doctor (the first time, she had reduced from 6 to two, who died).
· No one we have known who has conceived higher multiples and not reduced, and no one we have known who has undergone selective reduction or experienced a loss in any twin or higher order multiple birth, has even conceived more than 3 again, with the exception of the mothers in 12), 14) and 16) above. Even with the imprecision of the technology, the knowledge which these parents gained from their experience of the medical and emotional realities of multiple birth and especially loss enabled them to work with their doctors in a way which for most avoided being placed in the situation of conceiving more than 3 again.
A few years ago at a conference, I talked with a young, patient-oriented doctor who had said in a talk that when there are 3 or more embryos, they talk with the parents and “while we don’t tell them to, of course we want them to reduce”. I asked him what he would advise the parents if they were to later express any regrets or mixed feelings. He initially replied that they don’t: “We counsel them and they leave feeling good about their decision” – then realized that he would not see them later to know if they had these feelings or not. When I asked what he would advise them if they did, he replied, “Just to ignore it!” When I explained how‹with the birth and reality of very much wanted children, things like birthdays and special smiles, and knowing that these ones made it okay, or in some cases, didn’t – that advice to ignore reality could be even more “crazy-making”, his eyes became very big and he said simply, “Oh!” It is the many caregivers like him, who genuinely care about their patients and their outcomes but like them are in a system or non-system that is rather disjointed (especially in the United States where fertility technology is unregulated) whom we hope to encourage to find ways to counsel their patients both before and after conception as realistically as possible, and keeping the long-term emotional aspects in mind. In many ways, these aspects are no different from what we have seen in relation to other forms of multiple birth loss, and cannot be “willed” away, even when one or more babies had congenital anomalies and would not have lived or been healthy. It is also important for them, as well as those caregivers who may be biased against selective reduction as some are, to remember that the parents will live with whatever decision is much better in the long run if it is truly their decision. Most of all, it must be remembered that what couples are seeking in these pregnancies are not the medical procedures that they may undergo, as if they had a broken bone to be fixed, but ultimately the human experience of being the parents of these babies – which they will forever be, whatever the outcome is.
For parents, our conclusions are that as long as these higher order conceptions are possible, there are no easy answers, nor are there any for those whose pregnancies are spontaneous. Once the dice have landed in a certain way, if they do, there is not an easy way – and any attempt to make it seem simple may only make it more difficult, now or later. As with other kinds of multiple birth loss, not everyone reacts in the same way; and not every individual feels the same way or as intensely all of the time as he or she does at some times. What matters is for each to be open to the meaning of their experience, whatever it is at a given time, and have some support and validation for it in order to cope and heal. We feel that negative emotional impacts of selective reduction are intensified not only by the lack of appropriate counselling by those who do support its use, but also by the isolation and near-secrecy experienced by most in a society in which anything related to the termination of pregnancy has been highly politicized and harshly judged while “the more the merrier” is glorified. This is the rock and the hard place between which so many seem to find themselves.
Most of all, however, we urge that ART and its application must continue to be refined so that higher order pregnancies occur only rarely, rather than more often with selective reduction being considered a “fix”. This is not only for the sake of the babies of those who will not or cannot reduce, but the emotional health and happiness of those who will and do not deserve to suffer or even potentially suffer from this having been their first act as parents.
© 1995-2001 Jean Kollantai, Center for Loss in Multiple Birth, Inc.