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Research scientist Nichole Cubbage discusses her article, “The silent grief of vanishing twin syndrome: Why words matter in health care.” She explains that Vanishing Twin Syndrome (VTS), the loss of one fetus in a multiple pregnancy, often leads to unique and isolating grief, frequently unacknowledged by health care providers. Nichole shares findings from her research indicating significant dissatisfaction among patients regarding provider communication and the information received about VTS, with over half reporting negative experiences. The conversation highlights how provider language—using terms like “insignificant” or medically unclear phrasing—profoundly affects patients’ emotional processing and underscores the lack of standardized clinical guidelines for VTS diagnosis and counseling. Nichole points to initiatives like the Butterfly Project as models for providing structured support and emphasizes actionable steps for providers: including normalizing discussions about chorionicity, acknowledging the emotional impact, offering resources, and referring to support systems, ultimately stressing that compassionate communication is crucial for improving VTS care.
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Transcript
Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Today we welcome back Nichole Cubbage. She’s a research scientist, and today’s KevinMD article is “The silent grief of vanishing twin syndrome: Why words matter in health care.” Nichole, welcome back to the show.
Nichole Cubbage: Thank you for having me, Kevin.
Kevin Pho: It’s good to see you again. All right, so I think you were last on a few years ago talking about vanishing twin syndrome. So tell us briefly just some context as to what that is and then jump into your most recent article and what it’s about.
Nichole Cubbage: Well, the very definition of vanishing twin syndrome is complex. It’s even more complex than I had initially disclosed in our first podcast together. Since that time, I have undertaken a whole doctoral degree, and I have come to find that there are different definitions of vanishing twin syndrome in the literature. However, the most universal and most cited is when a loss of one or more multiples occurs during any trimester in pregnancy.
There are three general outcomes that can result from this. We could have full or partial reabsorption. There could simply be a blighted ovum, which is an empty sack. There also can be a sack with an embryo that has ceased developing. And the most severe option typically is a fetus papyraceus or conjoined twins. The fetus papyraceus is a paper-thin fetus. It’s when a fetus gets compressed against the surviving multiples and the placenta and the mother. And this can vary again, depending on the type of multiples as well as some other circumstances.
But there are other definitions in the literature that imply that vanishing twin is only unique to twins, instead of also being applicable to higher order multiples. We know that it occurs in more than 50 percent of triplet pregnancies and more than 40 percent of twin pregnancies. And it occurs in at least 35 percent of all pregnancies conceived with ART. So that’s a pretty big statistic. Many vanishing twin syndrome cases, because of what appears to be the ambiguity around diagnostic terminology, often go unnoted or not noted with the term vanishing twin syndrome. And even in many other cases, there are patients who will never go diagnosed at all. Because by the time they receive care at their first obstetric appointment, the twins have often vanished, or the multiples, I should say, have vanished.
But this is not always the case. Most often, they do typically vanish within the first 13 weeks of pregnancy, so at the end of that first trimester. But many women do not have their first obstetric appointment until 10 to 13 weeks. This can vary obviously, depending on location and a multitude of other factors for health care access. But in the United Kingdom, for example, most patients don’t have their first obstetric appointment until that 13-week mark. So for many of those patients, VTS will have likely occurred by that point. But more research is really needed to understand those statistics and really understand better uses of similar and diagnostic terminology that’s used in cases of vanishing twin syndrome.
Kevin Pho: So tell us about your latest KevinMD article: it surrounds the way that health care clinicians communicate to their patients about vanishing twin syndrome. So what’s your article about?
Nichole Cubbage: So, the way that we communicate really matters. The timing of when we communicate, the words that we use when we communicate, the mannerisms in which we communicate: all of those things go into affecting the patient experience and potentially patient decision-making and outcomes.
When you are talking about properly informing a patient that a miscarriage has occurred or a missed abortion has occurred to some degree, ensuring that the right terminology is used so they can understand the full scope of what has occurred is very important. In a lot of cases, including my own VTS case, many women are diagnosed with the term blighted ovum, and there’s really no further explanation as to what that means.
A lot of the participants from the study that we just conducted mention that when they were told about the term blighted ovum, some of them said that it was a life that had tried to form but, they were told, it just wasn’t able to for some reason. Some of them had indicated that they were informed it was potentially due to genetic reasons, which seems to be the general consensus in the literature for the cause of vanishing twin syndrome. But most of them were not actually given much explanation as to what the blighted ovum meant or what the potential risks were to the surviving multiples. And that is exceptionally important when the burden of care primarily lies on the patient, the parents, the family, to ensure optimal outcomes for the surviving multiples.
Kevin Pho: So, for those with vanishing twin syndrome, if they experience suboptimal communication, just tell us a spectrum of emotions that one feels, just from the people that you talk to within the community.
Nichole Cubbage: Well, just to start off on a positive note, though it always unfortunately kind of goes down the negative: there were a number of participants who had positive experiences with their providers, that felt very informed, very safe, knowledgeable, like they knew what to expect. And for the vast majority of patients though, over 50 percent of the participants, I think they rated it as a negative one on a scale of, I think it was negative two to positive two. I have to look back at my own study, but the scale was a sentiment score scale ranked from negative two to positive two, and more than 50 percent of participants rated a negative one.
Now, the vast majority of participants were from the U.S., but we had over 115 participants from, I think, 18 nations in three different hemispheres, and it was very insightful. But most of them were anxious. They didn’t know what to expect. Most of them felt very sad and just underprepared. In many cases, including my own, a lot of patients wanted to know how to prepare for the birth. And that included the handling of fetal remains at the time of birth. Since there is some ambiguity as to what can occur with the remains throughout pregnancy, there lies the question of whether or not they’ll be present at birth and, if so, how are those memorialized or disposed of in accordance with the law and patient desires and needs. So that was a big cause of uncertainty, and that seemed to really vary by location because, again, the laws surrounding the handling of fetal human remains and what defines human life vary so greatly.
And there’s really not much of a universal definition, as many listeners probably know. There have been philosophical debates about what constitutes life for a long time, and not even trying to get political about it, it’s really a matter of what the patient needs and believes, and I think accommodating the patient needs in health care is the priority.
From a clinical standpoint, the vast majority of the literature and providers, from at least the participants that we studied, appear to have defined life at the beginning of a heartbeat or the cessation thereof. But if you have vanishing twin, if you have a case where a heartbeat was never detected or there was never a heart to begin with, there may still be some wishes on behalf of the patients to acknowledge the life lost. And from a clinical standpoint, that can be difficult for providers who have seen developing fetuses come and go; it’s par for the course, and it’s a tricky place. But the most important thing is just to prioritize the patient needs and wants.
Kevin Pho: So give us an example of some of the language that you would like to see used more often, or some of the mannerisms or some tips that you could share with clinicians when discussing a vanishing twin syndrome diagnosis.
Nichole Cubbage: This is a really interesting point. There’s a set of guidelines that it refers to vanishing twin syndrome as a vanish or as the vanishing twin phenomenon. And I think that very distant language in this particular set of guidelines, which serve as diagnostic criteria for ultrasounds—and that’s really the frontline point of diagnosis right there in VTS care—they refer to VTS as a phenomenon, and that distant language could be potentially harmful because, while at some degree it is a phenomenon, everything is kind of a phenomenon, right? To some degree, VTS is also something that we have clear diagnostic criteria for, despite all these various outcomes that can occur.
And so I’m writing a literature review right now, and one of the things that we’re working on is thinking about potential terms to use instead of vanishing twin syndrome. There is one term that has been proposed that I’m particularly a fan of: it’s called Womb Twin, and it really encompasses all the different types of loss that can occur. Vanishing twin, again, it implies that it only is applicable to twins or that twins, plural, vanish and not just one of twins or one of more multiples. And I think that that’s really important to account for is to be inclusive in the terminology that we use. And when we use the term Womb Twin, that could potentially… I don’t know, I want to say it’s better, but it’s hard to argue that it is actually better.
There, we could also use a spontaneous loss of a multiple pregnancy or a missed abortion of a multiple pregnancy. These are all terms that could be considered, but it is very difficult to find, as somebody who really loves language and philosophy, language is very difficult to find a good term. The term Womb Twin was created, I believe, by Althea Hayton. I have yet to find an earlier use of the term Womb Twin in academic databases. She is not included in the national health database but she is included in others. I think EBSCO has her, and she uses this term, and then she also wrote about—she’s a licensed British therapist—and she also wrote about some strategies for how to work with vanishing twin syndrome patients. That is potentially a whole podcast in itself, but that term may be more inclusive.
In any case, if we are going to continue forward with the term vanishing twin syndrome, there has to be a level of education, I think, that comes with it. One really amazing way that providers are being educated on multiple loss right now is through something called the Butterfly Project in the United Kingdom. Dr. Embleton and his team over there—there’s Dr. Rankin and Nunn and a number of other really amazing folks—created the Butterfly Project. It has provider training modules that are free up until a certain point; they’re sponsored by the National Health System, and you could take them on your own time if you look them up. If you look up the Butterfly Project and Dr. Embleton NICU, you’ll find it.
Most of the training is geared towards NICU providers because that is where we see a lot of these patients first being treated. However, there is a lot of work that also needs to be done when it comes to training providers in obstetrics and even in pediatrics because the continuity of care really goes throughout the whole course of life we need to account for that; it begins in the prenatal environment and then continues on or may continue on. We don’t know. Not necessarily everybody will have effects, but there will be a good portion who do.
And what’s also important to consider is that a lot of our current testing methods are inadequate for determining the molecular impacts on surviving multiples. So future guidelines and research really ought to account for that when they describe the frequency with which VTS occurs, because if we don’t really have the testing methods to adequately account for certain rates of things like chimerism, for example, it really is difficult to say what the outcomes are with certainty. Many testing methods have very inadequate thresholds, or they aren’t able to differentiate things, like in SNP microarray testing, we can’t determine if extra DNA is coming from the mother or a deceased fetus, things like that. And so, yeah, I hope that answers your question.
Kevin Pho: We’re talking to Nichole Cubbage. She’s a research scientist. Today’s KevinMD article is “The silent grief of vanishing twin syndrome: Why words matter in health care.” Nichole, let’s end with some take-home messages that you want to leave with the KevinMD audience.
Nichole Cubbage: My take-home message for the listeners today is that, again: words matter, how we talk about things. Not only the words that we choose to describe them, but the mannerisms in which we use them can really impact the patient experience and how patients view themselves, what is happening to them, and their disposition moving forward throughout such a fragile time in life such as pregnancy.
So, with that I thank you for your time today, Kevin. As always, you’re amazing and I appreciate you.
Kevin Pho: Nichole, thank you so much for sharing your story, time, and perspective, and thanks again for coming back on the show.
