Let’s talk about vanishing twin syndrome [PODCAST]

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“For the folks who are either physicians or becoming care providers, I hope you choose to familiarize yourself with this odd yet common form of loss. I encourage you to respect a woman’s right to decide at what point and to what degree her fetus and its life or loss has meaning to both her regardless of your views.

I implore you to become familiar with laws, regulations, and general procedures surrounding fetal death and disposal of remains in the state(s) in which you choose to practice and how it may vary in pregnancy. Last, I hope this helps the women who yearn to know the personal experience of someone with VTS, as I did during my pregnancy.”

Nichole Cubbage is a biomedical researcher.

She shares her story and discusses her KevinMD article, “Let’s talk about vanishing twin syndrome.”

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show, we have Nichole Cubbage. She is a biorepository technician, and she wrote the KevinMD article “Let’s talk about vanishing twin syndrome.” Nichole, welcome to the show.

Nichole Cubbage: Thank you very much, Kevin. I appreciate you having me today.

Kevin Pho: So we’ll get into your article in a little bit, but first off, can you share your story and journey to where you are today?

Nichole Cubbage: I recently gave birth to my daughter, Hazel, about three months ago now, and this journey all began within the first six weeks of my pregnancy with her. I discovered that I was pregnant with twins after my first appointment. However, that information wasn’t really elaborated on much initially, and even throughout the pregnancy, there wasn’t too much information given to me on vanishing twin syndrome. So I was in the process of looking for other stories from other women.

And after the pregnancy went by and I gave birth to Hazel, I thought it necessary to write down my own story and to share it with other women who are going through the same, in such similar situations, that I went through. There is some research out there. There is not currently very much. And so one of my goals, in part, has been to collect some of the bigger resources and also provide those in addition to my own personal experience.

Kevin Pho: So you wrote more about your experience in that KevinMD article, “Let’s talk about vanishing twin syndrome.” Now, before we move on, can you explain what vanishing twin syndrome is?

Nichole Cubbage: So vanishing twin syndrome was actually first coined by a German scientist named Stoeckel in 1945, and despite the name, it actually also applies to vanishing multiples. So whether that be triplets, quadruplets, or quintuplets, sometimes there is one or more embryos that disappear after conception. And after this happens, many times the sac from that embryo or embryos will fully reabsorb back into the mother and the baby in the placenta, depending on what caused the initial fetal demise and also what type of multiples are in there. So if they are di-di twins or mono-mono, that will have different effects.

Vanishing twin is kind of a dated term. It’s a little bit misleading because, like I said, the original scientist that coined it meant it to be applied to other multiples. And in some cases in the literature, it appears that interpretation has been followed through on. However, there appear to be some discrepancies in that interpretation, with people only applying it to twins. And with the advent of IVF and that becoming more common, we are now seeing more and more pregnancies with vanishing twin or vanishing multiples.

Kevin Pho: OK. Now, you mentioned your experience with vanishing multiples during your first six weeks. Can you go into more detail about what happened and your interaction with the health care system during that first six weeks?

Nichole Cubbage: Yes. So the first appointment I had was with a midwife. And funny enough, I walked into the appointment and said, “I think I might be pregnant with twins.” And she said, “We’ll see, we’ll see.” She pulled up the ultrasound. It was very quiet. I wasn’t really sure what she was looking at, so she brought in an OB/GYN, who said, “There are two sacs, two embryos, and only one of them has a heartbeat.” And I was scoffed at for coming in so early, because it was only six weeks and one day. Many providers ask that you wait a little bit later, but we were very anxiously awaiting the conception of our daughter, or daughters.

But at the end of that appointment, when I went to go check out, three of the four sonograms that were taken were thrown in the trash right before my eyes, in front of the whole waiting room. And the one sonogram that they kept for their records only reflected what appeared to be one embryo. The three of the four that they threw in the trash reflected that second embryo. I requested, actually, I demanded my sonograms be given back to me, and with the permission of the midwife, they indeed did so, with the caveat that I should not look into them. I was told that these images of my own uterus were incorrect and that, you know, it was nothing I should look into. Of course, I did, and I found out that what I was going through was vanishing twin.

It wasn’t until later that I noticed that the words “vanishing twin syndrome” had been noted in my file. And despite my repeated questions, there was a huge lack of answers, with physicians referring me to other physicians within the practice. And despite some of the physicians even having twins themselves and supposedly being experts on this topic, I was not given many answers, especially with regard to how to handle any potential remains of the twin that might be present at birth.

So there was some discrepancy with regard to what to expect, because I was initially told that the sac should be gone by the end of the first trimester, and then by the end of the second, and that was not the case. The last time we saw that sac on ultrasound was at 24 weeks’ gestation, and I believe it disappeared sometime in the late third trimester, although I have no solid proof of that because I did not have any ultrasounds after that 24th week, as my provider stated that it was not medically necessary.

Given the ambiguity of whether or not there would be any fetal remains present, I wanted to prepare for arrangements and acknowledge the loss of the life that I felt I had, and that was not really allowed. What happened was I was referred to the hospital in which I had intended to give birth, and the hospital themselves wasn’t even quite sure what to tell me to expect. They had me then reach out to a bunch of different funeral homes. A couple of the funeral homes said that we might be able to cremate it, but the vast majority of them said that they would not be able to cremate a placenta due to it being mostly water in its content. The degree at which they have to incinerate those remains would completely reduce any ashes that were left of it.

So that caused a lot of anxiety throughout the pregnancy. And after speaking with so many other women who have gone through similar situations across the world, this seems to be a big source of anxiety for those who do wish to acknowledge the loss of a life. I think all too many times in health care, many providers, you know, see a miscarriage or a loss at six weeks, and they don’t think too much of it. Even at eight and 10 weeks, they don’t really think too much of it. And it’s understandable that we all have different views about what constitutes the beginning of life. However, when a woman is carrying, even if you wanted to call it the potential of a life or a life, it should be solely up to her how much value to place on that. And if she so wishes to acknowledge that loss, I think resources should be made available to do that.

In the case of singleton pregnancies, I would like to note that providers will often explain to patients what is going to go on with their bodies when they are going through a miscarriage anytime within the first trimester. However, when it comes to vanishing twin, it is treated completely differently. It’s an odd form of miscarriage because for many women, there is no blood. For some of us, there is, but for most of us, there’s not. And so you don’t see anything coming out of you, and that’s different. It’s almost as if the loss itself is more invalidated because of that.

Many health care providers, in their day-to-day job, you might get a little bit jaded, you know, by this loss of this cluster of cells that may or may not have had a heartbeat and surely did not have a brain at the time of its loss. You know, it seems so insignificant to a science person, but as a science person myself, and also as a mother, that loss was indeed significant, and it is for so many other women.

Kevin Pho: Now, when you talk to other women who had undergone vanishing twin syndrome, are their experiences similar to what you just described?

Nichole Cubbage: Yes, most of them are. However, I would like to positively note that there are quite a few providers, I have heard, that do sit their patients down and explain to them what is going on in their body and what they can expect in the coming trimesters or weeks or days, what have you. I have to say, though, all too often, this is still not the case.

There is an article, a fantastic article by Althea Hayton, called “Carrying a single twin: reducing stress or producing stress by breaking the silence,” written in 2010 in the Journal of Prenatal and Perinatal Health and Psychology, I believe. And it talks about why many providers don’t talk about this with their patients, and it’s because it’s believed that it will cause more stress for the woman by telling her that she has fetal remains just kind of hanging around inside of her, and they may or may not be gone by the time of birth.

I think that is a huge misconception, after speaking with so many other women and after going through this myself. It’s a stressful experience, period. Being pregnant, whether you’re completely healthy or not, is a very stressful experience, period. And I think that, you know, the more resources that women have, and the more they know about all the different potential outcomes, the more they can prepare and ultimately feel comfortable, which helps facilitate natural birth.

Kevin Pho: So let’s be clear. For those OBs, midwives, and family physicians who may be listening to this podcast and encounter a potential patient with vanishing twin, what are some specific things that they should be doing?

Nichole Cubbage: We need to familiarize ourselves with how to handle the remains. That is a huge process, because some women don’t want to handle any remains, whether their placenta has absorbed it or not. For some, you know, there’s nothing there. Others wish to memorialize that loss. And I think respecting that loss is the second thing that we can do. So first, familiarizing ourselves with the remains and state laws surrounding that, because that is something that differs state by state as well as hospital by hospital, and also just respecting a woman’s right to acknowledge her own loss.

Further, I think that we can do a better job of educating ourselves and other health care providers on vanishing twin. I know many physicians I have spoken with aren’t even familiar with the condition at all. I’ve had some people ask me, “Is that really a thing? It sounds kind of made up.” And no, in fact, it is. It is not as wild as the name sounds.

I think, you know, creating some awareness around this and just talking about it, and also talking about the very definition of the condition itself, because as we’re seeing more and more multiple pregnancies, this is something that’s going to continue to increase. And so to ignore it, I don’t think, would be in our best interest. But to not only provide resources to women but to further resource research in this area, I believe, would be of great interest.

Kevin Pho: We’re talking to Nichole Cubbage. She’s a biorepository technician, and she wrote the KevinMD article “Let’s talk about vanishing twin syndrome.” Nichole, let’s flip the question around, from the patient perspective. So if a patient suspects having vanishing twin syndrome and is under the care of a clinician who may not be as familiar with vanishing twin, what are some specific questions that patients should be asking?

Nichole Cubbage: That’s a really good question. I think that depends on their type of pregnancy. So I know one of the very first questions that I had was, what kind of twins was I even pregnant with to begin with? Because that might give some indication as to the reason for the fetal demise. For example, if they are mono-mono twins, we know that they share a lot more resources than di-di twins, and so there could be some differences there that wouldn’t exist with a di-di pregnancy. So just gathering your own understanding of what is actually happening in your body, and understanding your rights to that information, is very important.

I also have been suggesting to others to seek outside resources, so whether that be support communities or other physicians or survivors themselves who have gone through this. Those are the things that you can do if you find yourself in a case where maybe your provider isn’t giving you the kind of information that you need. Demand it. Demand it, or go find it. The internet is amazing, and it’s a wonderful place, and all the information that I found was out there on the web. And so it really is a complicated situation, and it is a case-by-case basis. And I think just understanding your individualities in this situation, and then seeking out help, would really be to your benefit.

Kevin Pho: And what are some specific resources one can look for if they suspect vanishing twin?

Nichole Cubbage: That’s also a very good question, and unfortunately, there aren’t too many. There are a few books that I have found. One is by Dr. Brent Babcock, called My Twin Vanished, Did Yours? Althea Hayton also wrote a book called Untwinned, along with a few others. She wrote a great children’s book called Two Little Birds, which is the only children’s book on vanishing twin syndrome that I have found to date.

Personally, I am actually in the process of putting together an event panel discussion. One of my panelists is a woman named Valerie R. Samuels, who wrote a book called Always My Twin, which is another children’s book, but for twin loss postpartum, which could still be applicable. And there are many articles out there available for free, even through the NIH, through SAGE Pub, I mean, anywhere. Just Google Scholar “vanishing twin syndrome,” and you’ll find a bunch of credible resources. There is also the Center for CLIMB, which I believe is the Center for Losses and Multiple Births, and that is a fantastic resource for many people.

Kevin Pho: And my final question: What’s your take-home message that you want to leave with the KevinMD audience?

Nichole Cubbage: You have every right to acknowledge the degree of pain that any loss causes you, whether that be a loss that occurs in pregnancy or a loss of a family member or a friend, no matter how distant or close. Grief is a very funny thing, and grief turns into mourning, and I think we have to respect people’s right to mourn differently. Some of us view life a lot differently than others, and that’s OK, but we have to respect that. At the end of the day, that’s really it. We just have to respect one another.

Kevin Pho: Nichole, thank you so much for sharing your story, time, and insight, and thanks again for being on the show.

Nichole Cubbage: Thank you, Kevin. Have a great day.

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