The Lone Twin Network

The Lone Twin Network is a specialized group run by and for surviving twins whose loss has occurred at or around birth, in childhood, or during adulthood. This video is an account by surviving twins about living with loss. Shown in a BBCtv programme in Nov 2011.


Support meetings

It seems a long time ago now, when I first went along to a support meeting for others who had lost a baby child. Just getting to that first meeting took probably a year after my first invitation, but there I was, along with my husband and seven other couples or individuals who all brought with them their own painful stories of loss. It was a pretty difficult evening actually. It was one of the first meetings of its kind for some time and so all the stories were brand new and each one had to be told in full and each one was given all the time they needed for that unfolding process to occur.  It did feel good, when it came to our turn to talk about the details that had happened to us a year or so previously when our baby twin daughter died the day she was born. It was somehow healing to hear and share these moments with others. I came home that night feeling like a washed out dish rag. You might think that feeling like this would be a signal that it was something wrong to have done. It was hard work but after each meeting I gradually felt lighter and lighter. It seemed that each time I spoke about what had happened, and heard other people talk about what had happened to them, it got just a little easier each time. This group became a safe place to share my feelings. Everything that was said, stayed within that group. They weren’t family members or friends I had to see in any other context so it felt comfortable to share pain and suffering that I might not feel so happy to share normally.

Perhaps support groups are more prevalent these days because our own families are more distant or our own families many not be large or very accessible so a group like this can offer a safe, non-threatening place to share our emotions and concerns.

A group is not for everyone. We might feel we are private, quiet or independent people who have difficulty in groups, or we might think that a group would not meet our needs. However, at some stage or another, if we find there is no other outlet for our grief that is helpful, we should consider finding a group that we can visit. Groups are all different, some are quite formal and each person gets a chance to talk without interruption and other groups are less formal, with just a discussion over coffee in a relaxed setting. Even in the less formal groups it is important that everyone is heard if they wish to speak and that the needs that people came with are met as best they can be. There should never be any pressure to share though either.

We have tried to find other ways for people to meet others who have walked a similar path. Our magazine, Hearts & Wings is one way we hope which allows people to share with others, read about others but in their own space and time and privacy. So perhaps it might be like a support group in  different sort of way? On the local support page of our website there are some more options for groups around NZ to consider including joining up with our very active Facebook group which provides friendly, caring understanding people on a day to day basis.

However we get together, support groups help us to realise we are not crazy, just grieving…


Anniversaries & special days

It isn’t as if we don’t think about our lost twins almost all the time, especially in those early years, but somehow special days such as birthdays, anniversaries of particular events or the anniversary of their death, can bring to the front those deep emotions we may have been able to hold back on the more ‘normal’ days. There seems to be a resurgence of symptoms we might have thought we had left behind already somewhere on our journey. In the early years we wonder if we can manage to go back to those early painful feelings yet another time.

Sometimes, these special days bring to mind fond and happy memories, sometimes they bring us to a mood of solitude, or they may bring overwhelming sadness, grief, fear, regret or anger. Such powerful feelings. Being distracted, unable to concentrate, agitated seem to come as just par for the course really. There’s no ‘right way’ to feel or any time limit over when you should or shouldn’t feel this way.

So, is there anything we can do to help ourselves during this time? Many of the people I have talked to over the years and through my own experiences of anniversaries… ones that have worked out well and those in which we’ve failed badly to keep it all ‘okay’… have found one interesting fact to begin with. Quite often the weeks or days leading up to the event is actually worse and more stressful than when the actual day arrives. Those weeks before an anniversary can be harder just thinking about how it is all going to feel… will the day be okay, will I be able to do something to honour my loved ones or will I fall apart completely in front of everyone and if I do will that really matter… and also will anyone else even remember what day it is? The especially odd situation… when there has been the loss of one twin, is that the other twin still has a birthday to celebrate even though in many cases that is also the anniversary of the other twin’s death or even if it is not, it holds deep sadness that the other twin is no longer here to celebrate what was always a joint celebration and especially for a very young twin… the party must go on! There’s an excited little person who wants a ‘happy birthday’!

Working out in advance what you’d like to do always seems to help. Thinking about what is going to suit your needs and those others who share your loss. Looking after yourselves and those feelings even if it feels like you might be letting others down by not joining in with the party atmosphere they would prefer. Take care of yourself and try not to put yourself in too many situations where you know it is going to be too hard. A simple small family gathering might be just as okay to a three year old in the end than the fancy party you thought you should put on. Have it on a different day than the death anniversary, or tell yourself you will commemorate the death day on a different day… perhaps the funeral date instead so that you can free your mind for the party without feeling you have missed something or dishonoured someone by doing that.

Sometimes, people think about doing something very different from usual and they immerse themselves in fresh surroundings. Go to the beach, a movie, a place you wouldn’t have normally gone. A family in our coffee group has an ‘Aaron day’ and they take off somewhere special in his honour.

Take time to sit down with some photos, letters or memories if you have them. Maybe you could think about making a ‘memory box’ and start putting together things that help you to remember your twin/s. The items might be things connected with memories together or they may be items you have collected since which have become special or bring to mind special thoughts.

Scrap-booking has become really popular… maybe this is a way to remember for you.

Erect a memorial bench in a special place, perhaps a public place or just somewhere in your own property. What about garden ornaments like a sundial or statue? How about a pretty stained glass window?

Planting a tree is a lovely idea if you have a space for it or creating a memory garden. Then on those special days you can plant a new plant or spend time digging and weeding… and thinking.

Donate to a charity that was special to you or your twin or has become special since.

Fund a prize, cup or award in an organisation you have been involved with. Friends of mine built a Wendy house in the local play group in memory of their daughter who died at ten weeks. Emma’s house is a popular place to be especially if you are under 5!

Just most importantly is taking care or yourself, don’t over do your commitments in any area of your life at that time if it can help you to avoid any ‘avoidable stress’. Look after each other, you are all grieving in some way even if it looks like others aren’t so obviously. Make plans that you feel right about, in advance. Some years that will be more plans than others. Some years you might just want to ‘do nothing’. That’s really so okay too. There are no rules, no guilt to be had over what or what you haven’t done that you think you should compared to others. Just follow your heart…


The next pregnancy

The issue of subsequent pregnancy… For many of our readers the loss of their twins occurred before or around birth and they find themselves sometime, sooner or later, contemplating the idea of another pregnancy.

Firstly, we want to acknowledge two groups of readers of Hearts & Wings. Those who, sadly, are not in the position to be able to have another baby. Perhaps the twins were conceived with difficulty and now it looks like another pregnancy just won’t be happening. This is a huge grief in itself and requires a turn around in thinking and a re-adjustment of dreams. We won’t talk so much about this here but perhaps those who have been through this loss and grief might like to write and offer their thoughts. Particularly what got them through and how their life has panned out since all their precious babies are in heaven. It doesn’t happen often but another group of readers are those who have had another loss since their twins. I hope the families in these two groups know we are thinking of you and remember you.

So, we find ourselves deciding about another baby. It can be difficult to know when the “right time” is. Some are keen to become pregnant as soon as possible after the loss while others feel the need to give themselves some space to grieve. Either way deciding what feels right for you and your family is important. Sometimes a new pregnancy is a surprise to everyone and it might take time for this to feel right. It may take longer for one of the couple to get used to the idea than the other. Be patient… you have both suffered a lot of grief and while it may seem like a catastrophe to one partner for a time, it usually all works out in the end. Trusting yourself to be able to cope again with all the feelings that come with a new baby, may be the reason why a new baby feels like a negative thing to some. Perhaps a feeling of not wanting to go through the pain again if there is another loss, of feeling unable to cope if it isn’t all perfect this time round. So much to deal with that wasn’t part of the package the first time around! Be gentle with each other and take things slowly, step by step.

Once the baby is on it’s way there can often be more anxiety experienced than in a usual pregnancy. Depending on what went wrong to cause the loss of the twins, depends on what might make you most anxious. Perhaps the baby died unexpectedly at 23 weeks… so you might feel most anxious leading up to and as you pass through that time. Maybe there was a particular condition in the baby who died and until you see those first scan pictures and find it is all fine, you cannot help but worry. Overall, I think, most subsequent pregnancies are more stressful and don’t quite have the same feel as in the days before our loss when we didn’t think anything could go wrong with us! No one’s reassuring words of “It will be okay this time,” are worth anything until we hold a healthy little baby in our arms.

What about having twins again? Most of the mums we’ve ever talked to have all secretly or openly dreamed of having twins again. The feeling is stronger in some than others, sometimes they just think that only if there was a guarantee it would all be okay, would they want twins again, while others are bitterly disappointed when they find “There’s only one”. I know that I had to have a scan earlier on than I should have because I was continually thinking I must be having twins again and so I needed to do that to find out for sure before I went crazy. I came home from the first scan with our new pregnancy after our loss, in tears because there was only one baby. The scan looked oddly lonely with just one baby on the screen and it just didn’t seem right. With a little time I felt better with the idea and continued to enjoy the pregnancy and our new son who arrived 3 years after our twin daughter died. I knew in my heart having twins again was, firstly a long shot… even though their were twins in our family, it was still most unlikely that I would have another set, and secondly it would be a huge undertaking to go through a second twin pregnancy and also to watch one set of twins grow while we still would be grieving for our lost twin. Having another set wouldn’t fix our grief…

Telling others about the new pregnancy can be difficult. A lot of people don’t feel that same rush to let the world know that they did the first time. Perhaps it is the uncertainty of the outcome, maybe in feeling anxious yourself you don’t want lots of fuss from others who mean well but don’t make it feel any better. Maybe it is a little bit like walking on egg-shells for a time and so do whatever feels right for you and tell others when you feel ready… hopefully that is some time before people start looking sideways at your tummy!

Finding a midwife or doctor who will be sensitive to your unique needs and possible fragile state is important. Using the same carer as when you had your loss can be a comfort to some and saves a lot of explanation about your previous loss but sometimes people feel someone new might be help to give a change of feel to the pregnancy or they may have difficulty with the original carer due to the circumstances around the loss. Each person will feel differently and it is important to make a decision that you are happy with even if it means being a little more choosy than you usually are.

Having another baby doesn’t fix the grief of the loss of a baby but it does help to have a happy outcome and a new pleasant focus to your life. For me I tried as best I could to enjoy each moment with this new baby I was carrying. Knowing that life is precious and can be brief means that enjoying each moment, at just that ONE MOMENT, became important to me. As I held my new baby boy during those first few hours after he was born I had a sense that all the pain and distress of pregnancy and labour was still worth it for even just that one moment as I looked at him. Even if he was to leave us that day, as his sister had, it would be still a happy moment just then. I hope you can understand what I mean. As it turns out he is now a bright and happy ten year old who is just wonderful. He was followed by two more boys… it’s a noisy house! I never did get another set of twins nor did I get to have another little girl. I wonder what it would have been like to have another baby girl to hold… sometimes I wonder if having the boys was easier and less emotional but I can’t say…


Twin Encounters

Here are some thoughts on the issue that has sometimes been called “twin encounters”. I am thinking that this is common to those who have lost both of their twins and also to those who have lost one twin. The issue is primarily about the loss of the twin parenting experience or the experience of being a twin.

When we find out we are expecting more than one baby we usually feel a mixture of excitement, shock, disbelief, thoughts of “how am I going to manage”… and before long, for most of us, there is the feeling of being a little bit of a celebrity. It’s not always that way for everyone but so many of you describe that feeling. We imagine life with two (or more) babies and then as they grow, two little children and we wonder what that will be like as a parent. We are even thinking about whether they should be in the same class at school or whether we should dress then the same or differently or how we are going to foster their individuality while celebrating their togetherness. All this within moments of that first scan! Sometimes quite soon after those amazing moments, things fall apart and the dream of parenting twins is lost. One or both of the babies die.

As we go on the best we can, with our grief for the loss of these precious children, we also grieve for the loss of this special parenting relationship. Because having twins is unusual it is so very unlikely that we’ll ever have that opportunity again in another pregnancy if we are fortunate to be able to have more children.

Encountering living twins in the world around us is something we now have to face. We probably never thought this would be as big an issue as it often turns out to be and we might be surprised by the intensity of our emotions.

For some, these encounters happen before you even leave the hospital. Especially if you are in the Neonatal units, you’ll find twins everywhere. With one surviving twin, it became important to me have Emily’s cot label still with the words “Twin Two” on it. It was a comfort to me that she was still a twin despite her sister Katie dying four hours after their birth. In a practical sense it was also a warning to staff that there was a bigger story with Emily and to be sensitive to what that was. Only once was I in a room, struggling to breast feed this tiny 5lb, 11 week old baby, while sitting only feet away from a new mum feeding both her babies together. I never said anything but the staff were most apologetic later when they realised.

Many of us joined up with our local multiple birth club as soon as we knew we were having twins. It just seemed so exciting and to be a part of a group of people and hearing all their stories of managing two babies in one go… wonderful! What a time to look forward to. Then we arrive home without our two babies and the contact with these lovely people in this club that you’ll now never be really part of… strained and uncomfortable on both sides. There is a feeling that “yes, I still have twins… mine are just now in heaven” and “no, I can never be part of this group who are all about living twins and fun and BBQ’s and all the ‘difficult issues’ you once hoped to have to deal with. No matter how caring and considerate, the relationship with the multiple birth club is one that now brings much sadness and regret.

Many of us have to return to our old life, to jobs and other places and how many of you have written about your twin encounters in these places! How many go back to work to find another woman in the office is now pregnant with twins and it’s all the talk of the tearoom? You go back to school with your other children only to find there is a set of twins in their class. As you shop you see double prams and pushchairs everywhere and you can’t help yourself but you just have to do it… you look to see if there are twins in there and if there are, are they the same kind of twins as yours? Two girls, two boys, one of each?

When Emily was just starting Pippins, we drove up to a fairy dress up night and there outside the door were identical twin girls dressed in gorgeous angel outfits with the same curly golden hair… like Emily. She looked so alone… just her, next to this pair. I cried all the way home.

The intensity of the feelings about these twin encounters can be surprising. It can take us right off our guard. It is hard to describe what the feeling is. To say it was jealously would be wrong, sour grapes… no. To say we’d want anyone else to have to go through the pain we have experienced… no most certainly we wouldn’t. But it is a huge tug at our heartstrings. A knot in our stomach. A cloud over our day that hangs and won’t go away. It is tears that fall out of our eyes at unexpected and inappropriate moments. It is being polite to someone and then going home and crying as we cook the dinner. We might feel like we are bad or selfish people for having these feelings but I have come to find it is very, very common to feel like his when you have lost that twin parenting experience and it doesn’t go away anytime soon. Years later it is still a lingering feeling that rises at many an opportunity although I think I am now getting better and tougher at handling it… maybe! Knowing that it is “normal” helps in the dealing with it. No sense in adding guilt to a feeling when there isn’t any need! We just need to figure out slowly, as we can what works best for each of us as we confront these situations. There’s no one stop answer… everyone is different and everyone’s situations are different but it can be a relief to know you aren’t the only one who’s ever felt this way!


Baby Gone -true NZ stories of infertility, miscarriage, stillbirth & infant loss compiled by Jenny Douche

It is commonly estimated that one in six couples are unable to conceive, one in four pregnancies end in miscarriage, and 600 babies are stillborn or die soon after birth each year. The experience can be the most traumatic thing that couples ever go through. It is also very lonely and isolating. Many are desperate to read other people’s local and recent stories in order to gain comfort, however there are very few New Zealand stories available in published form. Baby Gone contains 45 true stories, written from the heart by those affected. The stories give moving accounts about the conception and pregnancy experiences, but perhaps most importantly, they talk of the emotional roller-coaster that is life after loss. The stories will help readers see that they are not alone in their feelings, and that they are not going crazy.

Baby Gone is compiled by Jenny Douché. In September 2010 Jenny put a call for stories out to the New Zealand public. Over 100 stories were received and 45 were chosen for the book. This book is readily available in bookshops and online.

The Lone Twin by Joan Woodward

Twins hold fascination for people. We are intrigued by their closeness. But what happens when twins are separated, especially by death? Twin mortality is high, but it is not uncommon for a lone twin’s loss at any age to go unmarked. They need extra help and support to take them through the loss of their “other half”. The loss of a twin can be devastating to the survivor.

Working as an attachment therapist, Joan Woodward uses John Bowlby’s theories as her conceptual base. She suggests that the highly significant attachment that twin frequently make with each other may begin for twins before birth. She takes the reader through their closeness and on to the experience of death and bereavement. The book includes parental attitudes to the surviving twin, the surviving twin’s guilt, the ability to cope and the effect of loss in childhood and adulthood. Of particular interest, perhaps, are those who lost their twin at birth. Throughout, the book is illustrated by words of surviving twins: affecting accounts of bereavement.

This is an important and rare book for many professionals -counsellors, psychotherapists, social workers, psychologists and teachers -who come into contact with bereaved twins and yet have little understanding of the dynamics of twinship and twin loss. Written in jargon-free language, it is also for the twins themselves, their families, parents and friends.

This book gives lone twins the chance for the first time. to have their voices heard, and professionals the opportunity to develop more effective ways of supporting them.

Joan Woodward, herself a lone twin, is a psychotherapist based in Birmingham, England. She is a founder of the Lone Twin Network, an organisation that enables lone twins to contact each other and share their experiences.