FAQs: What about infant⁄child loss support groups, and counseling?

How do I make sure to get all the other support that may be available to me? What about infant⁄child loss support groups? What about counselors?

One of our unofficial mottos is, “There is no such thing as too much support.” Our group hopes to be helpful on the special “twin”⁄multiple aspects of our losses, but there are many other groups which may relevant to the needs of bereaved multiple birth parents. Probably the most comprehensive source of information on support groups of all kinds in the U.S. (with some listings in Canada and England) is The Self-Help Group Sourcebook: Your Guide to Community and Online Support Groups, by the American Self-Help Group Clearinghouse (see our Other Resources section). Many of the groups listed are for particular medical conditions as well as for the emotional and informational aspects of any number of things, including bereavement.

Local support groups. The single largest group for the loss of a child is The Compassionate Friends (see Other Resources), with many local chapters throughout the U.S., Canada, and many other countries. It is for parents and other family members (including siblings) who have experienced the death of a child at any age from conception through adulthood. Some chapters have set up an additional group for those with pregnancy and infant losses, to better serve their needs.

The single best source of information on local infant loss support groups is National SHARE (see Other Resources). The website contains a listing of all the local SHARE groups in the U.S. (and a few elsewhere). National SHARE also has other resources on infant loss which may be of interest, and a listing of other infant loss-related groups (including MISS and regional groups such as HAND in California, MIS in New Jersey). Most of these groups are for pregnancy, neonatal and perinatal loss (as are the groups based in a particular hospital which many of our members have attended – check to see if your hospital has one, or whether the social worker has a group to recommend). Parents in New Zealand, Canada and England should see our Other Resources section and check with the multiple birth loss support groups in their country for loss-related organizations there (such as SANDS, for stillbirth and neonatal death support).

Many of us have had very helpful and meaningful experiences with local loss support groups. The “twin” aspects of our loss are of course so intertwined in our experience and our grieving – and yet with some support on those from CLIMB, parents can also appreciate what local infant loss support groups have to offer to all parents regardless of our specific circumstances. Almost all bereaved parents deal with anger, despair, challenges to our beliefs and worldview, issues about trying again, issues in a marriage or relationship, questions about what happened, trying to find ways to remember our baby or babies, and more. Many of us have been able to share and bond with others who are going through all of this too in their own way. For those of us who have a survivor(s), it can be difficult to leave the baby(s) home and go and simply be a bereaved parent – but it can also be really good to have an hour or two to just focus on our baby(s) who died, get to think about him, her or them without distractions, and have the chance to get a handle on what it is that we may need to do next in our grieving process. Also there is often the chance to take part in memorial walks and other events.

The other thing about local groups is that – with the increase in multiple births and the high risks – there is a reasonable chance that you will meet another bereaved multiple birth parent. (If not, you can help the group do a little more outreach in your area because surely there are some.) More groups have been seeing the participation of twin and multiple birth parents, and so you may not need to feel like something new or different. There is, though, always the chance that the group may be insensitive to those with a survivor, or to those who have had the death of more than one baby. We’ve found that before you attend a group for the first time, it is helpful for you to call ahead and talk with the group leader. This gives you the chance to see what the awareness and sensitivity level of the group is, gives the group leader a heads up on your situation and needs, and gives you the chance to see whether or not there are other bereaved multiple birth parents involved in the group (but if there aren’t don’t let that stop you).

You are always welcome to give the group leader or members copies of Our Newsletter and our other materials if it will help them understand further about multiple birth loss or if they need it themselves. Lisa Fleischer was the coordinator of the Anchorage-based Parents Reaching Out support group for many years, and is always happy to speak with local support groups about the needs of multiple birth loss parents.

A note about Facebook: In addition to the online forums noted in the Other Resources section, there are a number of Facebook groups for mothers of a surviving twin or multiples, and for parents of preemies and or of babies who have died, that include many twin and triplet loss parents.

Dear Infant Loss Support Groups…

Counselors. Another one of our many mottos is, “Counseling is an insurance policy on what’s left of our sanity.” We are all having a normal reaction to an un-normal and extremely bad event, and we don’t have to think that we are “losing it” to need and benefit by some counseling. We’ve all gone through a very complicated, traumatic experience and have so much to try to mentally, emotionally, spiritually and physically process when possible…and so often others around us don’t understand. Support groups are really important, but nothing takes the place of input on a regular basis from someone who is there to focus on your needs, yours only, and has the background and training to help you through some of the especially rough spots and sticking points.

Also, it is certainly possible to become clinically depressed – quite a few of our members (including some who didn’t have much support after their loss) have been diagnosed a year or more after their loss with clinical depression or anxiety. Most of them found that counseling, sometimes combined temporarily with anti-depressant medication, was totally invaluable – it didn’t make their loss and its impacts just magically (or strangely) disappear, but instead gave them a more level playing field from which they could finally address their needs as grieving parents and begin to restore themselves.

Sometimes infant⁄child loss support groups are a good source of information on who in the community has been helpful for others. Of course, not all counselors are equal and no matter who recommends someone, it is still important to follow your inner sense of what is right for you. One mother we’ve known since one of her identical twin daughters was stillborn at 31 weeks wrote:

The third biggest healer for me has been finding a supportive counselor. I tried four counselors before I found one I trusted. The first one I had tried pushed medications too hard and didn’t think I needed counseling, the second told me I was “fine” and needed nothing “as long as you are not trying to dig your baby up”. The third woman I tried asked to see the scrapbook I had made in Amber’s memory, and when she saw Amber’s photograph, told me, “That is really disgusting, you need to get rid of that, as there is no use in having that image in your head.” As you can imagine, I was crushed by the statement, as my child was not disgusting, she was beautiful. She was a real infant, fully formed to her tiny fingers and toes. It took me a year after that to get the courage up to try finding another counselor, but thankfully with the fourth try, I found a great person. I saw her every week for a year, and for a period of time, twice a week. I still see her on occasion, mostly around the girls’ birthday⁄ anniversary, as well as in the early fall. Not long after I first started seeing her she diagnosed me with Post Traumatic Stress Disorder and with counseling and medication I am 10 times better off than I was three years ago. It is very important to be able to talk about your loss with someone who isn’t going to say the “comments” we all hate so much, and who will listen without passing judgment. I’ve been lucky to have friends and my counselor who fill this need for me, who validate my feelings, and will just listen when I miss my baby.

In recent years, there are also more psychologists, licensed clinical social workers, and other counselors who specialize in reproductive issues, including loss and infertility, and more of them are becoming familiar with multiple birth loss issues. Searching one out can be especially helpful to those whose loss is after infertility and those who may be needing to look at options such as adoption and surrogacy, as well as those with major marriage or relationship issues.

As we said at the beginning…there is no such thing as too much support! And, you are worth it! These are several articles for counselors that may be shared with them, along with our newsletter.

The Death of a Baby Twin: Some Comments for Grief Counselors
The Death of Twin Babies: Some Comments for Grief Counselors