Forming a Local Multiple Birth Loss Support Group

  • Getting started The heart of any group is people who – despite their own loss and their own circumstances – really have the desire and commitment to making a group happen and go well. We’ve noticed that the groups which manage to “get somewhere” are usually those which came from two or more people working together who are compatible and able to share with and count on each other. Also, building up a number of other parents whom you yourself appreciate talking and sharing with is a good way to start a group – when the time is right, that core group can “go public” more. If you don’t know anyone else where you are, or if you and your friend(s) would like to expand your contacts, check with us. In some places, there has been a “team” of a mom who lost one twin and a mom who lost both her twins who are friends with each other, and that has been especially effective.
  • What kinds of multiple birth loss? The most basic decision to make about your group – one that does need to be very clearly made – is whether your group will include all multiple birth loss (loss of one twin, both twins, one or more of triplets or higher, all of triplets or higher) or whether it will be only for parents who have at least one survivor of a multiple birth loss. As CLIMB we of course greatly prefer to see groups that include all multiple birth loss. There is a very big need for groups that address the very unique, bittersweet type of grieving faced by those who have a surviving multiple(s) – involving issues that are not addressed at all in “regular” loss support group – and we think those needs can still be met in a group that also includes other multiple birth loss (and so can the needs of parents of the loss of both or all for support on the special twin aspects of their loss not addressed in other groups).
  • We also know that many who want to start local groups and have lost one twin or higher don’t feel equipped yet to deal with all multiple birth loss, along with being concerned about the issues of raising their survivor(s). What we recommend is that, if you chose to have your group include those who have survivors, you contact us about someone in your area who has lost both twins or all triplets or higher, to whom you can refer any contacts you get from or on behalf of parents with complete loss. These contacts will happen, once information about your group gets around, just from the fact that it relates to loss in a multiple pregnancy or birth. That way, you will never be in the position of having to say, “We’re sorry, you lost too many babies.” This person, with our help, can network others who contact over time, and may end up with an interest in having a meeting and forming a grouping that could be under the umbrella of your group.
  • Your decision will make a big difference in how you organize and run your meetings – please see below. Also, it is crucial that the brochure and any other materials for your group be clear on whom it includes. If it is (only) for those with survivors, it’s not “for multiple birth loss”, it’s “for those facing the bittersweet challenge of raising one or more survivors of a multiple birth” or something along those lines.
  • Another decision to make is how “old” your group will go – will you include parents who have lost a multiple or multiples in the toddler years? in childhood? in the teen years? There are of course some issues in those losses that are different from those in pregnancy and infant losses, and it’s important to have or find a parent who has experienced “older” loss to work with you if you want your group to include loss past infancy.
  • What about professionals? We highly recommend getting a professional involved in your group from the early stages – a public health nurse, hospital social worker, psychologist or other professional you know or can meet. It is not necessary for it to be someone who is already very knowledgeable about multiple birth loss (few people are) but someone who is genuinely caring and “trainable”. In fact, one big reason why local groups are important is that they’re a great chance to train professionals who in turn can make an impact in their own professional in areas related to multiple birth loss, as well as be a local resource. Having one or more professionals you can work with is also an invaluable back-up on some of the things you will be dealing with, and they can bring a helpful perspective to your activities. However, it is important to remember that this is your group, not theirs, and it’s a group of parents talking with other parents, not a therapy group.
  • Independent or not? We really encourage people to look around the community and see whether there is an already-existing group that your group could be part of. For example, if there is a pregnancy and infant loss support group that would like to sponsor some additional meetings that are for bereaved multiple birth parents, that can be a good way to go as you won’t need to completely invent the wheel to have access to referrals, resources, outreach and publicity, as well as experience with doing a support group. This might be a community-based group such as SHARE or The Compassionate Friends, a hospital-based group (if it is open to anyone regardless of where they delivered), or possibly a church-based group (if it is open to anyone). That is how we do it here, and these have been done in other places around the country as well. It may be that your local twins club would like to sponsor a network or group, and this can work well as long as it is specifically for loss in multiple birth rather than all loss. (That is how we do it here too! as have others.) At the same time, it’s essential that what you do be led by and determined by the needs of the multiple birth loss parents, not by others no matter how well-meaning. If you think that would not be the case, or that you would be at risk of being put to the side of someone else’s agenda, then it is better to be independent and go on to develop active relationships with others groups over time. In some communities, there is no choice but to be independent since there is not an infant loss support group, twins club, or other possible partner.

    Doing the group

  • Your group may begin as a network, a few people who know each other, and then come in contact with others. The point at which you decide to have a meeting of some kind is up to you and whether there are at least 2 or 3 others who would like to. When you do, there are some things to consider:
  • Place When the group is small and you all already know each other, meeting at someone’s home can be all right especially if there aren’t yet other options. But in general, as the group gets bigger and as people come whom you don’t know yet or may not even have spoken with yet, a public place is preferable (and most new people are more comfortable going to a public place). It’s important that the public place have some privacy though! – a park or a restaurant works for a get-together, but not for ongoing meetings where people need to be able to really talk and at times cry or be angry. Some of the no-cost things that have worked for us and others are: a meeting room at the local public health center, a meeting room at the public library, a livingroom-type room downstairs in a church and one in the printing company owned by a member’s father. (Loss groups tend to avoid meeting at the local hospital since it may be too difficult for recently bereaved parents to come back there.) One good exception was the livingroom of one of our members: it was really well-located next to their business, was large enough and a little separate from the rest of the house, and her older daughters could do childcare for any babies or children who came along.
  • Contact Once it is going to be not just those who know each other already, you’ll need to a way for people to contact the group. A Yahoo e-mail address can be set up, with someone responsible to check it, but also you may wish to include those who are not on internet or e-mail (about 25%, in our experience) and that means using someone’s phone number or having a place where phone messages may be left and returned, and someone responsible to do this.
  • Name Depending on whether your group is part of something else (an infant loss support group or twins club, for example) you’ll want a name for it, or even if it is part of something you probably will. We recommend something as accurate and as inclusive as possible – something that includes “support for multiple birth loss” or “support for loss in multiple birth” can identify you well. It’s important, though, that the name represent the nature of the group – as noted above, if your group only includes those with a survivor(s) then that needs to be reflected in your name. Note that while many people like names which include “angels” others will be put off by this assuming that the group is for people of certain beliefs; we recommend names that are culturally inclusive as well.
  • Purpose How you do things will depend on the actual purpose of your group. Is it a group for infant loss support, because there are no others around locally, and the members need “everything”? Is it a group that exists in addition to a local loss support group that some people go to, and so can focus more on the special twin⁄multiple aspects of people’s losses? Is it for all multiple birth loss, or for those with a survivor(s)? If it’s for those with a survivor, is it focusing more on the loss itself, or on raising a survivor(s)? Is it going to meet regularly, or is it a whenever-we-have-enough-people-to-meet thing? The more that the group focuses on loss, and includes parents of all multiple birth loss, and meets regularly (all of which we think are a good thing!) the more important it is to be informed, have a professional on tap, have some good group guidelines and information on resources. By the same token, if your meetings are not regular, but if they are the only thing that most people have available to them for support, you may want to be a little more casual about how you do things and in a way keep it a little light: in other words, to hold something that is done like a loss support meeting that brings up many kinds of intense emotions and sharing, leaves people “hanging” if it’s a one-time thing with no next meeting planned to continue the process.
  • Meetings In the New Zealand Twinloss group, it’s worked well to have overall meetings that deal with topics that everyone with multiple birth loss has in common, and then hold regular coffee mornings in someone’s home for those with survivors, who can bring them along and have a chance to talk about all the survivor issues. This is an approach that we highly recommend. For the overall meetings, we’ve found it extremely helpful to have some on-site childcare, an experienced person(s) in another room nearby so that people who need to are able to bring along their little survivor or subsequent baby, younger kids, etc. and yet they don’t distract from the meeting or become too painful for those without living children yet or a fragile survivor still in the NICU. This has worked well with our local group too. There are plenty of topics that we all have in common as multiple birth loss parents while having the chance to openly share our own experience.
  • Guidelines It’s extremely helpful and actually essential to have some good working guidelines that are reviewed by the facilitator at the beginning of each meeting – and that’s one good reason why it’s helpful to designate a facilitator each time. The ones we have found to be most important are: each person having a chance to speak, and no one being required to speak; everything is confidential (what is said here stays here, period); no comparing of losses or situations; no judgments (including about difficult decisions) or assuming of how people are supposed to be; staying on topic – which is our loss and our reaction to it, not the state of the world or other people, etc.; and speaking in “I” terms (“when my brother said X I felt –” instead of “you should tell your brother to – “). When something goes outside the guidelines the facilitator gently but clearly brings it back and this makes the ongoing meetings rich and rewarding in some way for everyone.
  • Scope Another thing to consider as the group gets bigger is how you may relate to parents who are in the hospital now, either because their loss was very recent, or because they are hospitalized or on bedrest with “going longer” after the death of one multiple in-utero or “knowing ahead” that one or more will or may die soon after birth – will you possibly be available make these kinds of visits if requested? and if so how will that work? Like some other loss groups, we recommend that these kinds of visits be done by one or two members whose loss is at least a year ago, since parents with more recent losses may be eager to do it but can’t always predict how they will react, or control their reactions. (This “year rule” tends to go for group leaders and facilitators too, though we’ve seen some amazing exceptions – and we all owe ourselves that “me time” before focusing much on others’ needs.)
  • Special challenges With multiple birth, multiple birth loss, fertility technology, and so much else, the possibilities for what will come up are many, and more than what are typically in regular infant loss support groups. You may have a member with 4 survivors and other children, and others with no living children yet. The mom who lost all her triplets last year may be pregnant again with twins this year; another mom may lose her surviving multiple. A mom who lost one twin after a good pregnancy at term may find herself in a difficult subsequent pregnancy with a singleton. Marriage issues, special needs survivors or older or younger children with special needs, multiples, and other family situations are “everywhere”, and people come from diverse backgrounds and may be anywhere from their teens to over 50 in age. Building rapport and having good guidelines mean that we can all appreciate each other as equals and peers, and gain so much by sharing our experiences and letting others share theirs, while knowing the common bond that we all have. Having continuity of the group despite all the changes in people’s lives and needs over time is another major challenge too! and so is the leaders’ setting some limits on their time so that it doesn’t risk becoming overwhelming or take away from family time.

We hope this is some food for thought! and welcome comments from those who have been involved in local groups of some kind. We hope we’re not scaring you either! but one of the reasons that there aren’t more local groups yet is that it is more a bit more complicated than it would seem from the need and it’s important that they be a positive experience for those involved. Anyone is welcome to be in touch with questions, comments, experiences, ideas and anything you think would be helpful to include in this, including your experiences.

Another whole topic that relates to this is starting e-mail groups, and local groups using e-mail to communicate between meetings-that will be for another article!

Jean Kollantai