CLIMB

The Emotional Aspects of Assisted Reproductive Technology


Deborah L. Davis, Ph.D., author of Empty Cradle, Broken Heart

Imagine that you’ve wanted to have a baby for years now. (Maybe you don’t have to imagine – you’ve been there, done that.) Month after month of disappointment and heartache has become unbearable, especially after you turn to the specialists and endure many invasive rounds of fertility treatments. After this last trial, you’re not sure how you’ll proceed if it fails. And then it happens. The doctor’s office calls to report a positive pregnancy test! It is the most glorious news.

But wait. The pregnancy test came back with a sky-high beta-hCG. You go in for ultrasound. There is more than one baby. More than you can safely carry. But you see all those heartbeats and you feel attached to each and every child. And so the most glorious news turns into a nightmare of options. Do you decline selective reduction and subject your babies to the risks of premature birth and possible death or disability? Or do you enlist selective reduction, guaranteeing certain death for some babies, but reducing the risks of premature birth, death or disability for the remaining one, two or three babies? You can’t help but think, “This is not what I was wishing for.”

Possibly the most difficult part of making this choice is that there are still uncertainties about the outcome either way. You might refuse reduction, and all your babies may die, or they may all do okay after a lengthy hospitalization, or the outcome may be somewhere in between. If you enlist reduction, the remaining babies may all be fine, or they may all die, or the outcome may be somewhere in between. With reduction, you are shifting the risks, but you don’t know if the shift is significantly pushed in a positive direction or not. What do you do?

I asked some CLIMB mothers to theoretically and abstractly ponder these questions, and 24 responded. For almost half, it was purely hypothetical, and for more than half, they had actually been there (for most of them, with further loss). The mothers who had faced decisions about selective reduction had hard-earned wisdom, but it was also interesting to hear from the more inexperienced mothers as they pondered the choices/outcomes and gave their reasoning for what they thought would be “difficult”, “more difficult” and “most difficult” for them to live with. In looking at all of their responses as a whole, the only valid conclusion to be drawn is that it is all so very difficult to live with.

If you found out at 7 weeks gestation, that you had 8 babies growing in your womb, looking ahead, which situation do you think would be most difficult for you to live with?(Please rank “difficult”, “more difficult”, “even more difficult” and “most difficult”)

(a) Decline selective reduction and let nature/fate/God take its course, and lose all 8 babies before or after delivery.

(b) Employ selective reduction with 6 babies and give birth to healthy twins.

(c) Decline selective reduction and deliver 8 premature babies, 1 of whom dies, and after several to many months of hospitalization, end up with 7 babies: 3 of whom are relatively healthy and mildly delayed, 1 of whom has continuing chronic medical needs and is mildly delayed, and 3 of whom have significant dependence on machines for breathing or eating, and are moderately to severely delayed or disabled.

(d) Employ selective reduction with 6 babies and give birth to premature twins who die shortly after delivery.

How would you rank these situations? For you, which would be the most difficult choice/outcome for you to live with, and why? For you, which one is the least troublesome?

This article focuses on the philosophical, ethical, and emotional thinking that mothers rely on to form their opinions. The responses mothers gave were wildly diverse, with all possible combinations represented, highlighting the fact that this is a very personal choice. What they chose isn’t so important – it is the mothers’ insights into their decision-making that is so meaningful here. This was not a search for popular opinion, nor a critique of choices, nor a search for “right” and “wrong”.

So, with an open mind, examine the thoughts, ideas and feelings that mothers bring to this dilemma. Value both the ethical and emotional, because good decisions of this kind come from the mind and the heart.

Mothers’ Responses
For the mothers who responded, two main lines of ethical thinking emerged:

1) Is any life better than death? Or do some fates constitute unbearable suffering for a child, such that perhaps, some fates are worse than death? Is using selective reduction your responsibility as a loving parent? Or is selective reduction too much like “playing God”?

2) Do you focus on the babies who may survive or the babies who die as a result of selective reduction? Would you feel more guilt for enlisting or for refusing selective reduction? Does the outcome affect your guilt?

Naturally, these lines of thinking intersected. Each group is marked by the first two choices, and yet within those groups, mothers varied on how they filled in the third and fourth choices. Nevertheless, the first two choices and their ordering – that is, which options each mother believes would be relatively easier to live with, tended to unite the groups of mothers in similar ethical and emotional thinking:

Selective reduction is not an option. Selective reduction is a responsibility. Having any live babies is better than having them all die. Options that prevent suffering and aim for the highest good are best. Selective reduction is best avoided unless it prevents suffering.

Selective reduction is not an option.
A number of the mothers took the hard line that selective reduction is not an option, and they would not entertain the choices or outcomes that involved selective reduction. In other words, they would decline selective reduction even if all the babies die or the very mixed outcome of life, death and disability, instead of enlisting selective reduction and having two healthy babies as a result. To give you some insight into their reasoning, most reported that their philosophies were grounded in their religious beliefs, which forbid them from knowingly “taking a life.” For instance, Lu says, “Life begins at conception, all life is precious.” Other moms cite their reliance on “God’s will” and accepting whatever that may turn out to be. Jade combines the two, relying on “a strong belief in God and knowing that life begins at conception.” Liz says, “Call it selfish – but I couldn’t live with myself if I had to choose as in the movie ‘Sophie’s Choice.'” In her mind, it would be a choice “to abort [some*#93; of my healthy babies.” The fact that a megamultiple pregnancy ends up producing unhealthy or dead babies was not a consideration. The babies start out healthy and they all deserve to have a chance at life. In fact, all of these mothers naturally chose the mixed outcome (life, death and disability) as their first choice, combining their beliefs that life is better than death at any cost, and selective reduction was out of the question because of the guilt that would accompany such a decision.

Selective reduction is a responsibility.
At the other end of the spectrum, another number of mothers took the hard line that selective reduction is the parents’ responsibility, and chose both of those choice/outcomes over the other two. In other words, they would enlist selective reduction and have two healthy babies, or even live with the outcome of all the babies dying rather than decline it and have the babies die, or even the mixed outcome of life, death and disability. In their minds, to decline selective reduction is to abdicate responsibility. When you enlist ART and insert multiple embryos, you’re also signing up for selective reduction if too many embryos implant. To decline is a choice that unnecessarily puts all the babies at risk, reducing the chances of any of them having a healthy life. Many acknowledge that while it is a painful choice, it is an ethical one. Ada says, “I do not want to cause the death of my fetus/potential baby, but prefer to do so if this seems necessary to establish a strong chance of a ‘good’ outcome, i.e., healthy twins. I would be terribly sad to employ selective reduction, but not feel morally wrong and guilty, unless maybe guilty for permitting the OB to implant too many eggs, or whatever caused it.” Tai explains her sense of responsibility and addresses the religious arguments when she says, “I would want to do my best to see that at least some survive, rather than do nothing and see that all are lost. I have a problem with the religious aspect that some people attach. I don’t understand a couple using fertility treatments/technology to GET pregnant – and then refusing doctors’ advice when advised of selective reduction. Suddenly, the doctor and technology that was so wonderful in getting them pregnant is now ignored. Now the couple decides to not listen to the doctor, and instead decide to ‘pray’ and say things like ‘God gave us these babies.’ In MY opinion, God did not. If he had wanted you to have children, he wouldn’t have made you infertile. Technology got you pregnant – therefore the ‘wisdom’ of technology needs to be heeded during the pregnancy.”

So between these first two groups, one embraces religion, the other embraces technology. The former relies on “God’s will” to determine outcome, while the latter takes responsibility for their own and their children’s destiny. Both are quite adamant about their choices, and consider decision-making to be quite straightforward, perhaps in part because the vast majority of these respondents had never actually faced that decision. When you haven’t gone through it, how can you know how emotionally complicated it really is? On the other hand, for some mothers, religion may keep the decision straightforward and however tragic the outcome, they rely on their religious faith to cope.

In the middle are the mothers who live in the gray zone. They see the complexities and weigh them carefully. All of them acknowledge both the value and the deep pain of choosing selective reduction and are torn between wanting to increase the chances of having babies who can be healthy, and wanting to avoid aborting the other babies. They can see selective reduction both as a duty, and a source of guilt. However, that element of guilt can be mediated by the “good outcome” of having two healthy babies. In this case, the decision is clearly a responsible way to aim for a higher good, and the accompanying guilt becomes easier to bear when two healthy babies are born, but harder to bear if the outcome is completely tragic as when all the babies die. Their counterpoint to the religious arguments is summed up by Dawn’s observation that “faith isn’t enough to make humans fit to carry litters.”

Having any live babies is better than having them all die.

Some of these mothers are guided by the principle that life is better than death under any circumstance, and so choose the options that lead to having at least some babies live, over the other options where all the babies die.

And then, some of these moms figure that if all the babies are going to die, you might as well spare yourself the agony of selective reduction and let nature take its course. As Elsie says, “The idea behind selective reduction is to improve the outcome and it is a heart-wrenching decision to make, especially when you have been trying so hard to just have ONE baby! When you go on to lose one or more babies later, it compounds the guilt and sadness that you felt earlier at the time of the reduction: it gives you a double dose of grieving.” Quinn imagines “that parents who choose to reduce and then lose all their children feel guilty and wonder if they would have survived had they not reduced.”

Other moms chose the opposite course, acknowledging that even though all the babies died, selective reduction was the responsible choice since it was done with the intention of decreasing the risk of losing all the babies. Their guilt would be lessened, knowing in their hearts that at least they tried to give two babies a chance for a healthy life, and this decision was made in love. Interestingly, one of these mothers had a triplet pregnancy and faced those decisions. Rae says, “Certainly the premature birth of my triplets and the death of two of them very much affects my thinking. Also, though, for me personally I am against selective reduction and cannot imagine choosing to abort a baby I had tried so hard to conceive. On the other hand, sometimes I think I should have done that with my triplet pregnancy. And sometimes not.” She is a poignant reminder that these choices are never easy. Plus, in real life, you make the choice without knowing what the outcome will be. Is it possible that she would have two babies instead of only one if she’d enlisted selective reduction? If only she had known that she wouldn’t be able to carry all three. But how could she know ahead of time?

The uncertainties, not knowing how each choice would turn out, are a huge part of the dilemma.

Interestingly, all the moms who chose to enlist selective reduction and have two healthy babies first, followed by decline selective reduction and have the mixed outcome of life, death and disability, they all actually faced selective reduction decisions in their own lives. Some reduced, some didn’t, and all had some babies that died after their decision. Each is raising at least one surviving baby. Some who didn’t reduce have regrets and others don’t. The ones who did reduce don’t regret it, because they have a surviving child they may not have had otherwise, but on the other hand, as Elsie says, “I will never know what the outcome might have been had I not elected to have that procedure done.” Whatever the choice and whatever the outcome, mothers wonder about “what might have been.”

Options that prevent suffering and aim for the highest good are best.
Some mothers chose first to enlist selective reduction with the outcome of two healthy babies, with their second choice being declining selective reduction with the outcome of all the babies dying. For them, the second choice represented a chance to avoid the guilt of selective reduction, and also avoid the guilt of making surviving babies suffer, as in the mixed outcome of life, death and disability. For them, their children’s deaths would be easier to bear than their children’s ongoing suffering. Indeed, some of these mothers picked the mixed outcome as the most difficult option of all, and cite the fact that they don’t want to bring severely disabled children into the world, for their own sake and for the rest of the family’s sake. With this tragic outcome, they would have the guilt of not using selective reduction to spare their children lives of suffering. This is also not an outcome that parents are wishing for when they do ART. As Hope candidly says, “This is not to say that this is the most not-preferred outcome, but the most difficult, because while (a) deals with loss only, (c) deals with raising less-than-perfect children.” But other mothers would take a mixed outcome resulting from declining selective reduction over enlisting selective reduction and all babies dying, because they would painfully second-guess that decision to enlist selective reduction if all the babies died. Some imagine this would be unbearable. Dee runs down her reasoning for choosing options (b), (a), (c), then (d) and you can see how she tries to balance the responsibility and guilt of selective reduction with the guilt of not choosing it. She says,

“Choosing selective reduction in order to give birth to healthy twins would be a difficult decision, but would ensure the best chances for an outcome without any further tragedy beyond the reduction itself. It would be more difficult still to take a passive approach not to use selective reduction and then lose all the babies as a consequence. I would feel like I had abdicated my responsibility to make the tough decisions if I did nothing at all and lost all my children. Facing the outcome of carrying all eight babies only to lose one and have several with debilitating and chronic health problems with no prospect for a quality life is a heartbreaking outcome. Even the survival of three healthy children in this scenario would never compensate for the guilt and regret of bringing the other children into a life of severe suffering. Finally, the worst outcome I can imagine is to try to provide the best chance for at least two children of the eight by opting for selective reduction of six, only to lose the twins anyway. As a mother facing that outcome, I don’t know if I would ever recover emotionally.”

Selective reduction is best avoided unless it prevents suffering.
Some mothers are guided by the preference to avoid selective reduction, even if it means all the babies die, because you’re “letting nature take its course” and sparing yourself the risks and guilt of selective reduction, and you are sparing your babies lives of misery. However, when declining selective reduction subjects your babies to ongoing suffering, as in the mixed outcome that includes disability, it becomes the least defensible option. Thus, selective reduction has its justification when it prevents babies from continuing to suffer, as when two babies live, or all the babies die, but are spared lives of certain suffering. Lucy speaks from personal experience: “My answers are based on my choices having to do with my quadruplets and how I feel now (lost all at 20 weeks). While I am not against selective reduction, I would prefer to avoid having to do it. I also couldn’t live well with the guilt of not having reduced and having kids with as many needs as described in (c).” These moms are acknowledging that while enlisting selective reduction is painful, there are more painful results that can come out of declining it.

Conclusions and Solutions
Artificial Reproductive Technology: a very complicated and loaded term for a very complicated and loaded subject. While some artificial reproductive technologies (ART’s) are as simple and noninvasive as insemination, with no drugs or donors involved, others require unnatural hormonal stimulation, donated sperm, eggs or womb, fertilization in a petri dish and multiple embryos. When there are multiple embryos, there are many decisions that accompany their fertilization. How many do we insert? What do we do with the ones left over? Freeze and use later? Discard? Donate? Perhaps the most agonizing decision is faced when more than one embryo becomes implanted in the mother’s uterus and starts to grow.

While it’s true that ART has brought healthy babies to many couples who struggle with infertility, there are two sides to the picture. The lucky ones glide through the experience and emerge with an uncomplicated textbook pregnancy and one healthy fullterm baby. For them ART can seem as natural, simple and joyous as reproduction is supposed to be. But many other couples find the darker side. For them, reproduction through ART becomes unreal, complex and heartbreaking. While they went looking for a way to have a baby, they found themselves facing and struggling with much larger issues such as medical ethics, religion, philosophy, life-threatening side effects, multiple gestation, high-risk pregnancy, selective abortion, premature delivery, death, and disability. This is not what they had in mind when they turned to ART. They were supposed to get a healthy baby, not a nightmare of complications and difficult decisions.

Most couples envision holding a healthy newborn when they approach ART. They don’t necessarily think about, nor are they encouraged in many cases, to ponder the possibilities, the complexities and the contingencies. Even if someone does try to warn parents of all the complications and difficult choices that might be faced, desperate couples may ignore, deny or belittle these realities. “It won’t happen to me because – I’m a good person – I’ve already paid my dues – I deserve to get what I want – the odds and statistics are in my favor – once I get pregnant (that’s the hurdle) everything will be fine.” Of course, it is human nature to feel invulnerable and hopeful – until life (and sometimes death) teaches you otherwise.

Even if they consider the possibility of selective reduction, many prospective parents hold onto the illusion that they already know whether they would decline or enlist it. They even may consider these decisions to be clearcut, absolute, black and white, wrong and right. But thinking abstractly and theoretically is very different from having to make real decisions. Most people don’t realize that their neat notions will dissolve into a confused mess when theory meets reality. In fact, of the mothers who resolutely stated that “selective reduction is not an option”, all but one had never actually faced this decision with their own babies. Most mothers who have faced this decision discover that REALITY is full of complexities and many shades of gray. When there are real live babies in the mother’s womb, and the risks are definitely looming and they have to actually choose between tangible options – that’s when the real emotional consequences are deeply felt – and the answers aren’t so clear cut anymore.

Alas, hindsight is often the only thing that can give us 20/20 vision. “If I’d only known then what I know now” is a common lament. And yet, foresight is supposed to be full of optimism, hope and dreams. Especially when surrounded by “success stories”, why shouldn’t prospective parents reach for success as well? When the rewards are so great, and the risks are hard to imagine (unimaginable as one heartbroken parent says), of course couples are tempted to try ART. In fact, one mother astutely pointed out that in this pen and paper, mental exercise, we got to make the choices knowing the outcomes that go with them. In real life, you make the choice without knowing what the outcome will be. Whether you decide to decline or enlist SR, you don’t get to choose the consequences and aftermath.

Indeed, by looking at what goes on in the hearts and minds of mothers, it becomes apparent that in fact both options – enlisting selective reduction or declining selective reduction – create as many emotional and ethical problems as they solve. Giving parents the option of selective reduction is not a solution for mega-multiple gestation, because neither enlisting nor declining selective reduction is a fix. In fact, many challenges and difficulties can arise, including:

– Ethical – is selective reduction a responsibility or overstepping the boundary? Ethically, you could argue the merits of either option, making the decision that much more difficult for those who seek ethical counsel. – Emotional – –every baby conceived is loved. Each baby is precious, and the grief and torment of making a decision that is in the “best interests” is unavoidable, especially when the outcome is anything less than joyous.

– Medical – –there are many physical risks of selective reduction or carrying megamultiples to the mother, babies, and pregnancy,

– Financial – –selective reduction or not, NICU bills for prematurely born babies are way steeper than another round of IUI, IVF or GIFT “dear insurance company” and,

– Statistical – –many successes do not negate even one failure – –you cannot average out one family’s triumph with another family’s tragedy.

In view of their thoughts and experiences, mothers across the board agreed that educational efforts for parents should not attempt to frighten or patronize, but inform and prepare parents for a variety of possible outcomes and consequences of artificial reproductive technologies. Many mothers believe that both (1) the risks of getting pregnant with multiples, and (2) the risks and realities of selective reduction, were minimized by their health care providers. Dawn says, “One of the things that makes me most angry is that the Reproductive Endocrinologist asked us, ‘Could you do selective reduction if necessary?’ but never told us that selective reduction carries its own risk for prematurity, etc., and that it is NOT a cure. This is exceptional neglect because by no means is this kind of abortion easy for an infertile couple to choose and when it goes bad, it’s even worse. For most couples pregnant with multiples, they learn too late what the pregnancy entails, even if they are lucky enough to have a good outcome.” And the emotional fallout is rarely addressed. Dawn continues, “This is another thing that prospective parents of multiples might not realize – –how horribly difficult it is to actually decide to reduce and how it affects your entire pregnancy and life, even if there is a ‘good’ outcome.”

And yet, as Carly attests, prospective parents won’t always hear what they’ve been told, blinded by the promise of a precious baby. Carly enlisted selective reduction, but after a very premature delivery, one baby died, and the survivor is significantly disabled. She talks about her mindset during infertility treatments, “I remember the certainty that the hurdle was becoming pregnant. If that could be successfully resolved, further problems couldn’t possibly be in store for me. I am not certain that anyone could have convinced me that I was dealing in life and death issues, playing God, daring fate, exposing myself, my husband, and my yet unborn children to a kind of grief and suffering I could not yet comprehend.”

Later, she writes, “I was now face to face with the grim statistics concerning a multiple pregnancy and found myself having to make decisions I hadn’t been willing to believe that I could ever be faced with. It is hard to describe how surreal things seemed at this point, how unnatural it is to talk about ending the lives that we had struggled so to create, how terrifying it is to realize that ‘letting nature take its course’ is likely to result in the death of all the babies. The horrible irony is, of course, that there was nothing natural at all about this pregnancy, and now I was making decisions that human beings were not meant to make. And yet, not to decide seemed also to be committing the babies to a course also that I was choosing, or at least allowing to happen. In actuality, I had made the decision to impose myself in God or nature’s role when I initiated the events that caused this pregnancy. I realize now that I did that too easily, too naively, too vainly, yet nothing I could do at the point of decision – making would remove that responsibility from my shoulders.”

Many mothers tried to address the underlying problem of fertilizing or introducing too many embryos. Carly says, “I don’t think that we should seek success at the risk of creating situations, creating people who we then consider destroying in an effort to improve the odds for others. This price is too high. The ‘choice’ is not a choice we are meant to make.”

Many cited insufficient health insurance coverage which puts out of reach the more expensive but responsible options. Similarly, most mothers pointed out that selective reduction wouldn’t be an issue if the number of inserted embryos was limited to one or two, and if insurance would pay for more expensive procedures which can control the fertilization or introduction of multiple embryos, or pay for the additional cycles that may be necessary when fewer embryos are introduced. Syd explains,

“I would ask for better statistics about the risks of multiple births as a function of number of embryos or number of follicles. I would encourage insurers to cover selective reduction (mine doesn’t). I would also encourage insurers to cover IVF etc., and not to have a lifetime infertility coverage limit as all this does is make people decline more expensive options which might reduce the risk of multiples. My quads were conceived on a Fertinex/IUI cycle with 11 follicles. I was told the risk of multiples was no greater than what is in the brochure that comes with the drugs. Knowing what I now know, this is baloney. Better information must be given to doctors and patients about such risks. I would have moved to an IVF cycle if my insurance didn’t limit my lifetime coverage. [This ordeal] ended up costing the insurance company $70,000 rather than the $8,000 it would have cost for IVF.”

Real solutions address the real, underlying problem. The true problem with mega – multiple gestations is that too many embryos implant in the mother’s womb. Giving parents the choice of selective reduction versus doing “nothing” is not a solution because neither option undoes the act of too many embryos being fertilized or inserted and implanted. Selective reduction is not a cure. It does not reverse the lives that were. And declining selective reduction isn’t any better, because that does nothing about the risks mother and babies face in mega – multiple gestations. Plus, neither option guarantees a healthy outcome for the babies that remain.

In hindsight, when the “experienced” mothers review the process, many regret having to go through this painful, often devastating experience themselves. They clearly show that whatever the choice, it is the dilemma that the options pose and tragic outcomes that are so very difficult to live with.

Making decisions about selective reduction is always a road no one wants to go down, but unfortunately, many are forced to by current ART practices. But even more, these mothers regret putting their offspring through the mill.

While their babies were conceived and decisions were made with loving intentions, the outcome makes them second – guess their inability to foresee such a dreadful result. Suddenly, their quest to become parents seems so selfish, too presumptuous. They may ask, “Who are we to think we can beat the odds, mess with fate or force nature to give us what we want?” In the beginning, it doesn’t occur to ART parents that the costs could outweigh the benefits when the promise of a healthy infant dangles before them. It is afterwards, when the outcome involves significant suffering or death, that the hidden costs are revealed, and some parents discover that they, and especially their babies, pay too high a price.

If you faced SR decisions and all your babies died, do remember that if you could have known ahead of time what you’d end up putting yourself and your babies through, you might never have attempted this pregnancy through ART. And if your experiences were mixed, some babies are fine and some suffered terribly, then you are really in a bind. If you could have looked in a crystal ball, and seen your child(ren) who is doing well, could you turn away from it all? Or would you justify the sacrifices made by your other child(ren)?

When parents find themselves in such an unimaginable philosophical, ethical quandary, many chalk it up to God’s will or fate that one or more children “gave their lives” for the one or more who survived. Some vow to learn from these trials, or use their experiences to accomplish something positive. It is important to find meaning along your journey. If you struggle with guilt, it can be helpful to realize that none of the choices you could have made would have been guilt – free. When you face a choice between terrible and horrible, you are also choosing between terrible guilt and horrible guilt. The trick is to find a way to work through it and eventually let it go. To forgive yourself is to understand that you made the best choices you could, with love. Also recognize that it is the dilemma itself and the ensuing outcomes that are the source of trouble, not your decision. And remember, you certainly didn’t choose to be put in such a heartbreaking, impossible position. At the time, your job was to figure out which step to take forward. There was no option to turn back.

(printed in Our Newsletter, July, 2000, and reprinted by permission of the author. Not to be reprinted in whole or part without permission of the author.)