Though as with other aspects of multiple birth loss, truly comprehensive statistics are not kept, many researchers agree that there is a very high rate of the loss of one twin or higher multiple in the first trimester of pregnancy. The article “The Vanishing Twin”, by Drs. Landy and Nies, in Multiple Pregnancy (Keith et.al., see Bibliography) presents a great deal of information on this and what has been known about it over time; and Multifetal Pregnancy (Newman and Luke, see Bibliography) gives information that is quite striking, as do a number of other articles, some of which are listed in our Bibliography. Newman and Luke write that more than one in 8 spontaneous pregnancies begins as twins, and no more than one in 50 natural twin pregnancies survive (both babies) until term; for every liveborn twin pair, there are 10 to 12 twin pregnancies from which only a single baby is born alive. They say that it is estimated that 20%-50% of fetuses in multiple pregnancies identified by ultrasound in the first trimester are spontaneously lost. It is the prevalence of ultrasonography which has made the extent of this evident – and it has come at a time when multiple conceptions are more and more frequent because of fertility technology.
What this has meant to us is that there are so many who have had early ultrasound, often after in-vitro fertilization or other assisted reproductive technology, and learned at 5 or 6 weeks along that there are two or more embryos. Some have learned at 8 or 9 weeks along that there are two or more heartbeats. Yet they return for their next ultrasound to learn that one or more of the babies is no longer visible, and has died. Many of them had not been told, at the amazing time of the diagnosis of two or more, that such a thing was even possible or likely (and those who had been gently advised by their caregiver about early loss, still experience learning that it has happened to them).
The emotional adjustment is enormous for many people, and that is often true even if it has been only a few days between the news of multiples and the news that one has died. This seems to be especially true for those who were told that they were having twins, and now have only one baby. Even though it’s a shock at first, and many parents wonder how they will manage, the whole concept of “TWINS” and “my twins!” is so appealing to most people – especially those who have been through infertility – that we are “hooked” in just a few days. Many go ahead and plan their early maternity leave, buy all the books there are on multiple pregnancy and birth, tell their family and friends, and start thinking in “twos” of everything, feeling incredibly lucky and special. Even though originally the news of one was what they hoped for and expected, now it can’t help but feel like a comedown and a huge adjustment emotionally. They are also left feeling very vulnerable, and worried about the medical and emotional outcome for their survivor.
This kind of loss also often occurs in higher multiple pregnancies – according to some of the data mentioned above, even more often. Many who conceive three, especially, feel very much the same way. For some, the news may also be a relief from having to decide about multifetal pregnancy reduction (MFPR), because they had conceived three, four or more and now have two or three remaining (or for some it means that if they still decide on MFPR it will be less complicated), or selective termination because of a problem with one or more of the babies. It may also be a partial relief to their fears about prematurity and other risks and realities of very high multiples. If parents do lose one or more of the remaining babies later, they may regrieve that earlier loss because that baby or babies now seems even more real to them, and loss seems even more real. Some who do have the remaining babies safely wonder what could have been and why that baby could not have been here too.
This kind of loss is something that has also come up quite a lot in our personal experiences with the public, that is, with people who haven’t contacted us but whom we happen to meet in one way or another. Overall, it seems that each person’s reaction and adjustment is personal and individual – yet for most people this is a significant event, one that is not forgotten in one’s childbearing history and experiences. Some parents choose to name the baby or babies who died, or refer to them as “Baby B” or “Baby C”, and include a special symbol of some kind for them in their birth announcement. Some have memorials of various kinds, and we hope to be able to include some specifics of them in this section. Some plant a special tree or rosebush in their garden. Anything which is loving and honors the baby or babies is appropriate and helpful for the mother and the parents if they wish to do it. Some instruct their physician to look at birth for any signs of the baby (for example an indention in the placenta is one that people have mentioned) and this may be helpful in saying hello and goodbye to that baby and “my twins” or multiples. Others have requested a copy of the original ultrasound.
Beth Pector MD’s article, “Rebuilding a Life After Multiple Birth Loss” (www.thepreemieplace.org/ pregnancy.htm) contains a section on this which lists some resources, and also has some comments on the issue of any potential medical or emotional impacts on the surviving baby or babies. There are quite a few articles online in one place or another, and it is recommended to compare anything you might to those listed in this section and in our Bibliography before deciding how accurate any of them might be – the subject of twins and vanishing twins has unfortunately been the subject of some speculation and there is even a “theory” out there involving aliens which should be avoided. Claire Ainsworth’s article in the New Scientist (see Bibliography) attempts to summarize what is and isn’t known at this point. Our experience here of the outcomes tends to coincide with what is said in most of the available medical articles – the remainder of the pregnancy is the same as a pregnancy of the remaining number. For pregnancies that began as two, that means that it is never without the normal risks of any pregnancy, and some of the babies have been premature or had other problems or losses, but seemingly no more so than in singleton pregnancies. We do not know of any vanishing twin survivors with cerebral palsy.
The baby and the multiple pregnancy may also symbolize a great deal to people in their lives, as multiples do to so many. If you find that you are having a difficult time with this loss, it can be very helpful to seek out a counselor who specializes in reproductive issues. What seems to be the most important is that each person find whatever the meaning and impact of this event is or is not to her, and be open and honest about dealing with whatever it may be.
Loss in-utero in and after the second trimester
While the rate of loss apparently declines after the first and early second trimester, it is still much higher for twins and multiples than for singletons, and some of the conditions that twins are uniquely at risk for (such as Twin to Twin Transfusion Syndrome) play a part here too. Just the fact that there are two or more babies makes it two or more times as likely that stillbirth will affect a multiple pregnancy. We cannot even begin to say how many we have known who have lost one of their twins, or one or more of their higher multiples in-utero at any time from 16 or 18 weeks all the way up to 32 or 34 weeks and had to “go longer”. (Many also experience the death of one baby after 36 weeks but they are usually delivered soon after.)
The article in Multiple Pregnancy (by Dr. Keith et.al., see Bibliography), “The intrauterine demise of one fetus” by Drs. Lopez-Zeno and Navarro-Pando is a quite an extensive one on the medical aspects of this situation, and there are some others in print since the mid-1980’s. (Helain Landy MD has been researching and writing on these pregnancies for some years, as have Mary D’Alton MD and Kurt Benirschke MD, among others.) There is also information in Multifetal Pregnancy, by Newman and Luke (see Bibliography). Parents often benefit by informing themselves as much as possible, since an individual physician will still only have had a certain number of such cases in his or her practice and experience on which to base his or her approach to this.
Some of the things especially facing parents who are “going longer” are:
· vulnerability and worry about their surviving baby
For most parents, no matter how well the survivor seems to be doing, it is very difficult at times to believe that he or she could really be okay. The safe birth of the baby is a great relief, but the fear may persist after the birth, just as it exists then for parents who have lost a twin at birth, along with the grief. Finding ways to cope with fear is one major task for parents, especially mothers. Much is written about this for subsequent pregnancy after loss in a singleton pregnancy – and parents with the loss of a multiple in-utero are having to deal with it all now, all simultaneously in one experience of “my twins” or multiples.
Parents make various decisions about how much they want to know or not, and often experience a rollercoaster as to how much they worry or, as some say, “obsess”, or not. It is very difficult for the mother especially, because everything about the entire pregnancy is physically real to her at all times, there is simply no taking a break. How the mom experiences and reacts to it all often varies a lot from day to day, along with how she experiences and copes with the fears for the living baby or babies and her relationship with him or her (or them).
For those who want to look further at the available information, some of the articles above review the available data on outcomes for surviving babies. In our experience, the outcome for them has usually been good, if there has been no further loss in the weeks after the loss of the first baby/s, especially with fraternal (dizygotic) twins or multiples. Some survivors, though, even single survivors of twins, have been born prematurely and with complications, and monitoring for infection and/or premature labor seems to be very important. Some moms were unaware that premature delivery at home was a possibility given the position of their baby who had died, especially if this was their first pregnancy. The data suggests that monozygotic (“identical”) babies who do share a placenta carry higher risks of various kinds for the survivor, and living with this kind of uncertainty can be very difficult for parents. The majority of monozygotic survivors we have known have still had a good outcome, it is fair to say.
· planning for the birth, and seeing the baby or babies who died
In our experience, and in the articles mentioned above, it seems that when a multiple dies in-utero between about 14 and 20 weeks, there are likely to be some small, mummified remains, sometimes called “fetus papyraceous”. After about 20 weeks, sometimes before, there are usually remains that are identifiable as a baby. It’s important for parents to know this, and to know that they will be responsible for making arrangements, not the hospital, if the loss occurred past the number of weeks that is considered the difference between a miscarriage and a stillbirth in their states or country (it’s 20 weeks in many U.S. states). By the same token, if it was at fewer than the legal number of weeks but they would like to see and/or make arrangements for the baby’s remains, parents will need to make that very clear to their caregivers, in advance, because everything is considered the hospital’s right and responsibility. We continue to hear from quite a few parents with the loss of a multiple in the second or even third trimester who are told that it was a “vanishing twin”, or not given any information (or even the idea that there is information that they should be requesting). One mother lost one of her triplets in-utero near the beginning of the third trimester, and her caregiver insisted that there would be no remains. The day after she gave birth to the babies, a nurse arrived in her room to ask, “Well, what are you going to do about funeral plans?” There are many other examples of this kind, as well as of parents who would have liked to see their baby but did not have the opportunity, or only too briefly and clinically.
No one can completely plan ahead when it comes to the loss of a child, but parents who do know that their birth will involve loss have an opportunity to do things as much as possible as they would have wanted to. We have found that with multiples, this is not less important, but even more important in parents later being able to process their very complicated experience as a whole, and be as comfortable as possible raising the survivor or survivors knowing they did everything possible as parents for their multiple who died, while not feeling guilty about something they didn’t do while there was so much going on. They have a concrete experience to relate to, instead of having it all tend to seem like a strange dream.
Giving birth to a baby who has died many weeks or months before is sadly another unique aspect of the world of multiple conceptions and births – it simply wouldn’t happen in a singleton pregnancy. It is difficult for even experienced caregivers to know what the condition of the baby who has died will be when they are born, and much may depend on specific circumstances. However, many in our group whose loss was in the second trimester or after have been surprised in a positive way to see how “normal” their baby looked. (Is it possible that the presence of an ongoing pregnancy makes a difference?) One mother whose twins were born at 36 weeks after one died in-utero at 17 weeks, wrote in our newsletter:
“He was intact, complete with all of his fingers and toes, and clearly a boy. As I held Luke, my nurse washed Zach off so we could hold him and take pictures. We have two very nice pictures that my husband took with our camera, one of Zach in my hands, and another together with Luke in my arms and Zach in my hands.”..
We think it’s important that parents not expect or be told (as some have been), “Oh don’t worry, it will look normal” – and equally important that they not expect or be told that the baby will be something they won’t want to look at. Babies don’t need to be “perfect” for their parents to need and want to see them. Additionally, people’s imagination about what they don’t see, almost always is worse than what actually was (and from what we’ve been told, photos usually make the baby look worse than he or she really did and are not a good substitute later when the mom feels “ready”). One mother whose one twin died at 17 weeks along of congenital problems, wrote:
“We were still unsure whether we wanted to see Ryan since it had been approximately 18 weeks since his death in-utero. Our doctor was prepared to take pictures for us with a separate camera regardless of whether we decided to see him. We had a wonderful relationship with our doctor, who knew us since the beginning of infertility treatment and has an understanding heart. Although he prepared us for what Ryan might look like, we trusted him to tell us when he was born and help guide us. I was afraid that a horrible image might be my haunting memory. We decided to look at Ryan and touch him. I’m glad we made the decision because he looked better than the pictures revealed.”
We think it’s better for parents to expect, and be expected to, see the babies or babies, and if they are not certain, have the help of a trusted friends, relative or caregiver. We think it’s also very helpful in validating the truth of having had twins or multiples – it’s difficult to say goodbye to “my twins” or triplets or higher without saying hello, and it’s difficult to feel that you had separate babies, separate experiences, or one big one that is too difficult to deal with. Also it is helpful with the fear as well as the confusion – one mother, for example, was given her ultrasound photos and advised by her well-meaning caregiver not to see her identical twin son after he died in the early third trimester and was born later. “Just think of your son as a living likeness of him,” she was told. Dressing her survivor for his twin’s funeral was very difficult, she could not stop the feeling that she was dressing him for his own funeral, and then realized she had never separated the two babies in her mind.
Very few seem to regret having seen their baby or babies while it was possible to do so, though some found it more difficult than they thought it would be. What we usually hear are the regrets of those who have not done so, now that it is some months later. All that being said, though, we think it’s completely possible to cope and heal without it, if it is a full and free choice on the part of the mother. Otherwise it’s still possible but there are additional hurdles to overcome.
Finally, it’s important not to settle for a few foggy moments after delivery, but to see and if possible hold the baby later in a setting that is private, loving and with no time or other pressure – and more than once if desired. Parents need to sure also that they receive any possible mementos, foot- and/or handprints, locks of hair, nail clippings, and anything associated with the baby. The baby who died will not receive a legal birth certificate but in most states will receive a fetal death certificate (the state of Arizona now does have a Certificate of Birth by Stillbirth). Some hospitals also offer an unofficial “birth record” with the baby’s name, date and so on (for all babies including those who are stillborn). Parents may wish to make sure that their survivor’s legal birth certificate correctly identifies it as a twin or triplet pregnancy, if the loss was after the legal limit for miscarriage.
There are certain kinds of testing that may be done as to the cause of death, and it is wise for parents to ask their physician what they may be in their case (and ask him or her to research this if necessary), and decide what they may wish to do or not – then make their wishes known in advance as some of them must be done on a timely basis after birth. It is not always possible to determine a cause if one is not already known, but many parents find it helpful to learn whatever they can. Also, if the babies are of the same gender, it is possible in some cases to determine whether they are monozygotic (“identical”), and this may be important to parents both for medical reasons and in knowing how to mentally picture the twins (as well as picture them in a drawing or portrait by an artist, as many have done later). The Wisconsin Stillbirth Service Program (see Other Resources) may have information on testing for the cause of death which may be helpful. As we understand it, the main possibilities would include 1) an autopsy 2) tissue block samples taken soon after delivery, tested for genetic factors 3) a thorough pathology examination of the placenta or placentas and cords, which for example could determine whether the babies were monozygotic or not, and whether they shared a placenta or even the sac, and whether the baby who died had umbilical cord anomalies.
· making arrangements
Knowing in advance makes it possible to find a funeral director who is experienced in and sensitive in the area of infant loss and will work with parents to make plans that they feel comfortable with. It is helpful to do some asking around town (and check with a local infant loss support group), and make sure that it is someone who is supportive of the situation. Seeing and holding the baby again at the funeral home is an important opportunity for many, even if they were able to spend time with the baby at the hospital.
All of these things and more may be incorporated into a written birth plan which will serve as a guide to any or all caregivers – physicians, nurses and others– involved in the babies’ birth. This may be especially helpful since parents may not be able to know in advance which doctors and nurses and other staff may be the caregivers, depending on when the delivery occurs. Appendix 3 of Elizabeth Noble’s book, Having Twins (see Bibliography) is a “Birth Plan in the Event of Loss” which may be completed and adapted, even expanded for everything that parents may wish to be known by their caregivers, and providing for some contingencies (for example, seeing the baby later if general anesthesia becomes necessary at birth). Parents should discuss their plan with their primary physician and anyone else possible in the practice and at the hospital, and mothers should have a copy of it with them at all times. It has also been helpful for many to have a close friend or relative (besides the husband or partner) present at the birth to help ensure that everything goes as much as possible according to the birth plan. Amy Hodge’s article, “Doula Care and Twin Loss” contains the birth plan which she developed for herself and explains how the care of a doula (birth attendant) was helpful to her when she delivered her babies.
In addition to all these, there are many other things unique to parents who are “going longer”. These include talking and explaining to relatives and friends, and going out in public and being asked about your pregnancy (and “hiding out”)…doctor visits (including ultrasounds, and encounters with other who are pregnant with multiples)…dealing with decisions about a baby shower and preparing the nursery…talking to other children, if any…doing a birth announcement…planning a memorial…breastfeeding…and more. Not to mention marriage, and how the husband or partner is relating to the loss and to the mother’s experience (or experiencing this loss as a single mom, as some have). Some of the personal stories here we hope will be helpful in showing how various parents have related to these and other challenges, in their own experience.
A very special thanks to all those who shared their story in this section.