Encountering Multiple Birth Loss: What You Can Do
There are three main ways that twins and multiples clubs and organizations encounter multiple birth loss:
A member or prospective member experiences the death of one or more, both of all of her babies during pregnancy, or at or after birth…
- Definitely do send a card. The card should include both or all babies regardless of how many have lived and how many have died or whose outcome is uncertain. It can be very simple and sincere.
- Use this opportunity to let them know about our group and our website. This lets them know up front that they’re not alone – this may give them the chance to get all the mementos and experiences that will be so important later in their grieving, while it is even possible to do so. From the suggestions in our site sections for those whose loss has just occurred.
- It’s also a good time to let them know that they will always be the mother⁄parents of twins (or triplets or higher) even though sadly one of more of the babies is no longer here. One of the most difficult things for us is the loss of others’ knowing that we are the parents of multiples – and you of all people are in the position to reassure us on that point! It’s a very precious gift that people always remember.
- Parents who have lost of course tend to feel that we have flunked out of a special club, have been specially “un-chosen” and so on. One of the main reasons for doing the things mentioned here is that almost ANYthing is better than awkward silence, which parents take to mean that the club has rejected them and their babies.
- The suggestions above of course apply to talking with people in person or on the phone, too, which is what often happens first when checking on a prospective member or contact, or when one of them calls you to let you know what has happened. It is essential that the person or people dealing with membership be prepared to hear about loss and be able to respond appropriately. Some things that can help:
- If a phone call is made to someone who is pregnant or recently due, ask “How are you doing by now?” instead of something like “Your babies must have been born, tell me their weights so we can put it in the newsletter!” – i.e., don’t assume a good outcome.
- Read some of the personal stories in our newsletter or website, for a feeling of familiarity that will make it more comfortable to talk.
- Have our website url handy, and our printed flyer (it can be downloaded here). If you have local contacts with parents who have lost previously and are willing to be in touch with others, keep them handy and ask if the person would like to talk with them.
- Know about the nearest infant loss support group to your community, and have current contact information handy.
- Especially if the parent is someone you know, or you are invited, it’s often very much appreciated for one or more club representatives to attend the funeral or memorial. The same is true for visiting the mom in the hospital if she wishes.
- Include the birth⁄loss announcement in your newsletter along with or near the other birth announcements, with your condolences. Our local club found that it was actually helpful to do this not only for the parents’ sake, but also it helps others gently remember not to take their babies for granted. The same was true of having a small item in each newsletter mentioning that the club has bereavement support.
- There are several kinds of practical help that may be possible:
- Childcare for older children or a surviving multiple⁄s while the parents visit a multiple who is in the NICU, or help with meals while one or more of the babies is hospitalized. Having someone who is experienced in caring for tiny multiples is especially helpful when there is more than one surviving baby at home.
- Assistance with storing, selling, giving away, trading or otherwise dealing with the items that won’t be needed such as the double or triple stroller. Our club offers to pick up and store any such items, and to assist with selling or trading them, and it’s a fantastic help with a very painful aspect.
- If someone’s loss involves continuing to be pregnant after one or more of the babies has died in-utero, one has been delivered prematurely, or knowing ahead that one of the babies won’t live long after birth, offer any possible practical support and help make sure that (in addition to our resources) they are in touch with any resources in the community that may be helpful for them, such as bed-rest support.
- A card at the time of the 6-month anniversary and the one-year anniversary, especially for someone you know, is usually very much appreciated, along with a phone call or note from time to time in the first year.
- Getting together over coffee to talk can be very much appreciated at some point. Possibly the most precious gift any of us can receive is a caring person asking, “What happened?” or “How are you?” and then really listening for as much as we want to talk.
- If someone is already a member of the club, let them know that they will remain a member for as long as they wish. This doesn’t mean that they will necessarily want to get the newsletter, or come to meetings, or be around the babies and kids, and they should not be expected to – but it’s really good for the parents to know that the loss has not ended their membership (then they can renew or not as they wish later on). Some do remain involved in their club, and quite a few have offered to work with the club on bereavement support and be a contact later on. Some of us have found that, later on, some contact with the babies, kids and families is helpful in dealing with issues of “how it would have been” and “how I would have managed” (not perfect but ok!). (Sometimes it’s easy to think we lost them because we wouldn’t have been “perfect”, or else to think that our life would have been totally glorious!)
Parents who have lost one or more of their babies are starting off on a path that they never would have chosen but are suddenly having to take. Because of who you are, you are there at the beginning of that path. You are in a position to make it even more difficult by blocking it – or to make it better, less difficult than it already is, by helping to shine some light on it, so to speak. Even though it may be difficult for the parents to respond (and this is important to remember and not take it personally), kindness, caring and relevant information are appreciated so, so much and really do make a difference for parents in the long run…and are remembered forever.
A current club member loses one or more multiples to SIDS, illness, an accident, or congenital problems…
The fact that there are two or three (or more) children means that any tragedy that can happen to a child is two, three or more times as likely to come up in the set. Our group has always included a number of parents who have lost a multiple to SIDS, and there have always been members who have lost a young twin or triplet to drowning and other accidents, an illness, or a congenital condition such as some of the heart defects. (Also, a few families have lost both their twins or all their triplets in some way.) In recent years, improvements in technology have meant that some babies who might have died after birth from prematurity, complications of TTTS, or other conditions (twin-related or not) do live on but ultimately do not survive childhood. Sometimes they are expected to survive, but have (for example) complications of a surgery.
- The families who lose a young multiple are often involved in their local club or other multiples organization. This means you may know them well, which in some ways makes it even more difficult and painful for you, and in another way even more natural to do what you need to do to be of comfort and help.
- Everything mentioned in the first section of course applies here too. Practical help can be especially important as the parents are likely to also be dealing with the reactions of the survivor(s) and so it is a very challenging and exhausting time in that way too, along with the horrific adjustment to a “one-baby” or “one-child” lifestyle if that is the case.
- The mom finds herself in a situation where much of her life has revolved not only around her twins or higher but also around the club for most of her friends and social activities – then suddenly all of her friends have living multiples except for her, and her social world is completely altered. The potential loss of the comfortable peer group is a huge one – and it’s also not a good time to lose all your friends whom you can really talk to. So it’s all the more important that the mom not feel in any way rejected or pushed out, just because of awkwardness. Over time the mom will be working out her connection to the “world of multiples” and deciding what her relationship will be to it and to her friends with multiples. We have known of quite a few with childhood loss who continued to be active in the club for many years.
- Definitely acknowledge the birthday in your newsletter if the mom continues to be a member, and include both⁄all children in whatever way that the mom wishes.
- Be sensitive (then as at all times) about whether the mom wishes surviving triplets to be called twins or not (or surviving quads being called triplets or twins, or not.)
Club members who on the “outside” seem to have twins or triplets, actually conceived higher order multiples and lost one or more of them to at any time from early pregnancy to after birth; or they do have an intact set of multiples but lost one or more babies in a previous or subsequent multiple pregnancy.
With the rise of multiple conceptions and the spectacular rise of higher order conceptions through fertility technology, what used to be rare is not, and moms have experiences or combinations of experiences which used to be “off the map”. Probably the biggest surprise for us was how many of our own group are raising living multiples, either as higher order survivors or as living multiples born after multiple birth loss (or sometimes, before loss in a second multiple pregnancy) – probably about 20% of CLIMB altogether! There are always more of our members who are becoming pregnant with twins again after a multiple birth loss, usually through fertility technology, and thankfully the majority have been able to have them safely, although sometimes with many complications. Several have had two sets of living twins and also lost another set of twins or multiples. A few have even had subsequent triplets.
- For clubs and organizations, what this means is that loss is just below the surface in many groups. Everyone appears to be happy and enjoying the fun and cute things and dealing with all the day-to-day challenges of “the kids” – yet many have also had very tragic losses, and some of the most difficult, complex and painful experiences that anyone can ever have as a parent. Many have also been involved in difficult decisions, such as MFPR (“selective reduction”), selective termination (when one baby has a lethal problem), removal of life support, and more. This is a really major reason for always having some kind of awareness of loss instead of automatically assuming that everyone is one of the fortunate ones who “just” had their babies ok.
- This also means that there will be certain sensitivities that can come up. No one really likes having their kids’ names mixed up, but it was painful for a mom whose quads’ birthday was noted in the newsletter but the name of the one who had died was listed as having lived and another, living one was listed as the one who died. It’s always important to be extra-thoughtful about anything, even a seemingly small thing, that involves someone’s loss.
- Labeling issues are very strong for those with more than one survivor – and people’s preferences may change as time goes by, or in various situations. Check with the mom to see how she prefers her surviving triplets or quads or higher to be called, and when appropriate, acknowledge that this mom too had triplets or higher.
- Openness about people’s situations is truly appreciated. If people feel that they can’t reveal non-judgmentally their whole situation when it comes to loss, reduction, life support decisions, or other difficult things, they will tend not to join or stick around, and both they and the club will miss the benefits of their being part of it. On the plus side, with openness people can get from each other some of the support and normalcy they need. One triplets club had so many who had lost one of their triplets or one or more of their quads that they formed a special subgroup. In another club, one mom described the club as being half-full of moms like herself who had had their “twins” after selective reduction and were now “p – -d off” and undergoing emotional aftermath of it – and at least they could talk with each other, which was more than most of them could do with their families.
- Moms who have living multiples born after the loss of their twins, triplets or higher in a way face the same situation as that of those with a surviving twin: they really are grateful for what they have, and at the same time, they are even more aware of what they are also missing, in ways they couldn’t have imagined before. Also, they may be extra-involved in the club and its activities because they are even more glad to be able to do so. (One brave lady we know had a birthday party with 17 sets of triplets!) It’s important for others to understand that no one replaces anyone, and that thoughts and feelings about the other set of multiples are always very close.
Some general thoughts…
All multiple birth loss is complicated: there is the numbers of babies, and all the things that can occur, suddenly or over a period of time. Parents’ reactions at any given time are complicated as they try to withstand and process such an experience (often, as first-time parents). Often they are focusing on one particular aspect of their experience at any given time, yet really feeling all of them. Parents are grieving for “my twins” or triplets as well as for each baby. Everyone is an individual and there is no “right” way and no schedule. A long period of time and lots of support are needed until parents can regain their balance and find a “new normal” for their life.
Twins and multiples are so special – and one of the main reasons you are able to be supportive is that you truly understand that and would never say “at least you have one” “oh well, they weren’t meant to be” and all the other things that people say to us who haven’t experienced loving two or more at once and the joys and challenges of the experience of having multiples, and the kids’ relationship to each other.
It IS difficult and there is nothing anyone can do to just make it better, so it’s better not to have the illusion that there is something you (or anyone) can do to make it ok…just BE with them…Also, it’s difficult and challenging for you, and can bring up fears and discomfort for you as the parent of young children. It’s also easy to think that there must have been something that the mom did or didn’t do that resulted in or influenced the loss (who wants to really think that it can just happen despite all the best of efforts and how much the babies are wanted and loved? Who wants to know how high the risks even for twins really are?). It really helps to just realize all that and be able to put the needs of those who have lost ahead of your personal situation or discomfort, for the sake of what it will mean to them. .
We’ll be writing more about clubs establishing bereavement support. But in the meantime, whether you do or not, it’s important that the awareness of loss and being supportive isn’t limited to one or two kind-hearted individuals in the club who are willing to somehow “do it all” (and sometimes get flak from others). It’s something that the board should find a way to discuss and have some presentations on loss in multiple birth at least once a year, since it can come up in so many ways…Also, by recognizing loss and informing yourselves, you may be in a position to be helpful to others in the community (hospital social worker, various kinds of support groups, local health nurse, etc.) on how the needs of multiple birth loss parents can be met. If everyone who is concerned works together in some way, it’s truly amazing what a difference it can make to the family. It also brings respect to the club and a greater ability to deal with the not-so-happy sides of the world of multiples (for example families with handicapped or other special needs multiples or surviving multiples). .
A comment (from a few things that have come up) about talking to the pregnant mothers… Since the clubs of course tend to be made up of parents who had their babies successfully, it’s easy for it to seem like it always turns out ok for people, even with some complications, and that it’s just a matter of getting through it (and maybe cheating a little on the bedrest?!) with the babies guaranteed. It’s easy to not to realize how serious symptoms of a problem can be, even at (say) 18 or 19 weeks along. It’s really, really important that whoever is talking with pregnant moms not say that certain things are just “normal for twins”, but instead always encourage them to see their physician if they are experiencing anything that they are wondering about (and to be aggressive about getting an opinion, not to let the nurse just tell them on the phone that it’s normal). Ballooning in size, being uncomfortable, having a bad backache, all these and more can be part of the onset of Twin to Twin Transfusion Syndrome, premature labor (both of which seem to be most dangerous in the 2nd trimester) or other conditions, and their hope is in all available treatment before it’s too late. Better to go in and find out it isn’t a problem… A newer area of whether 37 weeks is term for twins (with mortality going up after that) is one you might wish to look into also, or at least not assume that if the babies are big and near term that nothing can happen to one or both of them – prompt attention can be vital then too.
Finally, people talking with pregnant moms should always encourage them to follow doctors’ orders totally, even if they may seem excessive. You are actually in the position to save the lives of some babies and the tragedy of loss to their family in this way. This can also include encouraging moms to know whether or not their babies share a placenta, to know the symptoms of premature labor, and to consult a perinatologist⁄ maternal-fetal specialist in addition to a regular OB, if there is any uncertainty at all.
A note about the newsletter and our group: One of the best things you can do is of course to let parents know that there is our group for support in multiple birth loss. There are several ways to do this: 1) Download and give or mail them our flyer, which tells about CLIMB and provides a coupon they can send to us to receive a sample copy of the newsletter. Along with the flyer, you’re welcome to encourage them to visit our website, or to call us. 2) You’re welcome to ask us to mail them one of our flyers, with a note from us that they’re welcome to be in touch. 3) If they wish, you’re welcome to show or give them a copy of our newsletter if you have one. The newsletter is lengthy and can be emotionally very intense for those with a recent loss, so it’s important that parents not receive it “unannounced” from you or from us. If you have their permission to do so, you’re welcome to give us their name and address and we will mail them a sample newsletter with a note and the form they can use to join the ongoing mailing list (which is the same as joining our group). (And if you wish to sponsor their subscription, you and we can let them know that and then we’ll contact you if they join.) If you’re not sure whether they want a copy of the newsletter, then it’s best to give them our flyer or ask us to. Even if it takes them some time to contact, most people truly appreciate just knowing that there really are others and there is a group that they can turn to when they wish.
You can make a difference!