By Jean Kollantai –

The experience of carrying two, loving two, getting ready to totally care for two lively babies at once was something I never could have imagined until it happened to me…and so was the emotional impact of the stillbirth of a twin or twins.  After a good pregnancy, carefully monitored with all the latest technology, and many months of not only feeling but watching my sons demonstrate their total enthusiasm for food, each other, me, and being “alive” in general, I found myself back in a hospital bed after a c-section, holding one baby in each arm–both big and beautiful, but one alive and one dead, for no known reason.  Just before the sonogram, we’d smiled while Andrew had seemed to be kicking really actively as always.  He was buried on their due date, which was also my 37th birthday (and they were my husband’s first children also, at 47).  His surviving fraternal twin Berney, who will soon be 8, is today so much like he was before birth;  and their little brother, Alexander, just turned 6, has the same loving and enthusiastic nature, not to mention the “killer” eyelashes, high energy, and knack for being at the top of his class.  They are very close.  Not a day goes by when I don’t wonder why Andrew couldn’t be here, too–and when I think how staggering it would be to have lost what we’ve had in Berney these 8 years, I know that is what we did also lose when Andrew died so suddenly, along with their special relationship as twins and “our twins”.

Even though it would have been easier not to, I loved Berney very much–and that meant that the loss of his twin brother was all the more painful, not only in the “big” ways but in so many day-to-day ways as I cared for him while grieving for his twin, and (as my aunt put it) had to deal with his being or not being “half of a broken set”.  At first I totally assumed I was the only one, then the next year met Lisa Fleischer–whose twin son Teddy died at 10 days old after anoxia from a prolapsed cord on their due date, and Becky Crandall–whose identical twin daughters Emily and Julia both died at 37 weeks along in a “textbook” pregnancy…also her first at 37, and also for no known reason.  In the meantime I’d searched for and amazingly heard from others in the Lower 48 and founded Our Newsletter–now CLIMB, Inc., the Center for Loss in Multiple Birth–for all those who have experienced the death of one or more, both or all multiples before, at or after birth, or in childhood (which I continue to coordinate, along with Lisa, Becky, Patti and Joe Dubler from our twins club, my husband Berney Richert, and others).

Over these years I have spoken and corresponded with hundreds of parents whose twin or twins, or one or more or all triplets or higher multiples, has died in-utero at some time between 20 weeks along and term–it’s still shocking and sad to see just how many of us there are (as well as how many other bereaved parents of multiples).  Many, in a situation unique to multiples, have even had to go through weeks or months of a multiple pregnancy after one or more babies has died in-utero, in hopes of getting the survivor(s) as close to term as possible.  Many have experienced the stillbirth of their baby or babies after many years of infertility, and expensive and invasive procedures and feeling that “it’s our turn at last”.  Many have experienced it along with the death of one or more of the other babies at some other time in the pregnancy or after birth–multiple pregnancy and its risks offer so many possibilities for “combinations”.  Some bring home 4 babies and wonder if the day will ever come when they don’t cry for the fifth–and others lose all 2 or 3 or 4 and come home to what Becky called “the deafening silence” and an uncertain future at a time when they thought they’d have it made, a whole family.  And there is everything in between, with twins and triplets.  Though the experiences and situations vary so much, I think it’s safe to say the following:

** The stillbirth of one or more multiples comes as a special shock, when it occurs past the time of prematurity, in the third trimester.  Whenever the higher risks to twins or more are mentioned, it’s usually in terms of prematurity–so when the babies get past that point, everyone feels “these guys are meant to be, it’s just a matter of getting them out!”  Many have even been told by their medical caregiver that it’s normal not to find a second heartbeat in twins close to their due date–only to find at delivery that one or by then both have died.  The much higher risk of stillbirth comes as a shock afterwards to most parents.  It is very difficult for me and for Becky and others to accept that our babies did not get a chance to try to struggle for life in the NICU, at a time when they were big enough to live outside the womb.  We can’t help wondering whether our twins would have both survived had they been premature, when we thought we were lucky that they weren’t…where was our “miracle”? For so many, “technology” has brought them their babies, monitored the pregnancy so carefully for so long, enabled us to know them so well–and yet could not keep one or more from dying suddenly, often unbeknownst, or even say why the death occurred.  I guess the word “betrayed” sums it up, and this feeling is reinforced not only by the “miracle” stories but the media images of multiples, which make it seem that multiples conceived are multiples born, alive, healthy and cute.  A parent in Australia who called as I was writing this reminds me to add that many of us also feel anger at our babies’ often not being even considered in statistics, even though they were big, because they didn’t live outside for even a minute, or considered a problem to be addressed.

When the stillbirth was in the 2nd or earlier 3rd trimester and followed by a premature birth, all the realities are sometimes in addition to those of one or more babies struggling in the NICU to live.  Whether or not a surviving baby(s) lives, the grief for the stillborn baby(s) is often experienced later, when it becomes possible.  A mother in Canada writes:

It was very hard dealing with the death of one baby and with the medical challenges of an 8-week premature one (with some physical anomalies and congenital heart defect).  Leaving the hospital with no babies was hard.  The nurses tried to assure me that my surviving son was really doing very well but I was so afraid he would join his brother.  We took him home.  I had expected arms full with babies and here we were with just one, so little and light at that.  I always notice an empty car seat, an empty baby swing, an empty bouncing chair.  I didn’t see “one baby”, I saw “not two”.  I think I have seen every possible combination of twins in these months, they are everywhere.

** Twins and multiples are so special.  Expectant parents of twins or more often feel–and are encouraged by others to feel–specially chosen for this special kind of parenthood.  An enormous amount of excitement and energy is put into “getting ready”, often early because of the expectation of an early delivery or bedrest.  When one or more suddenly dies in-utero, the feeling of having been un-chosen is devastating.  Most of us do not expect to ever be pregnant with twins or more again, even those who have a higher risk because of infertility treatment–no one can say, “Well, next year I’ll have my subsequent twins”.  We feel that we’ve blown a once-in-a-lifetime, incredibly special opportunity; and while a subsequent baby is wonderful when it’s possible, there are no illusions that it somehow evens the score for the twins or triplets…and no matter how many more children I may have–I could have 10 more and my son would still not have his twin brother.  Those who do also have a living set of multiples find that they are a bittersweet, often painfully vivid reminder of what they and, if they have one, their surviving multiple also is missing.  Also (thanks to TTS and the other special risks for identicals) many of us have been forced to learn that no one replaces anyone, not even a genetically identical person born at exactly the same time.

**These experiences are especially confusing and overwhelming.  It is simply bizarre to be so pregnant, so overwhelmingly full of kicking, squirming babies only to find yourself suddenly with one tiny survivor (or more of triplets), or none at all, and often not even know why.  It’s a long, hard mental struggle, too, just to process the reality of what has happened.  It’s tempting for parents to think that the baby(s) knew that they weren’t “ready” (this is where the ambivalence that people normally feel about the extra responsibilities hits you between the eyes).  I was tempted to think that somehow Andrew had taken a look around and decided to “pass” on being here–then realized that the painful truth is that he very much wanted to be, and was prevented.  It was bizarre to look at my cute little surviving son and feel horror at seeing only one.  The confusion was compounded by the “shadowy” nature of stillbirth in our society, which made it easy for others to act as if my surviving twin was my main baby, and Andrew was at most a nice extra that didn’t quite work out, adding guilt about grieving to guilt that he and “my twins” died.  When both or all are stillborn, there are no words to describe what it is like to have no one, so many dead babies.  Family, friends, and medical caregivers often tend to be overwhelmed as well–and also often try to find rationalizations, or encourage parents to think of the twins or triplets or more as “one baby”, one entity.  Understandably, these things often happen in loss support groups as well, but add to the isolation and guilt people already feel.

** It’s hard to say goodbye without saying hello.  For all of us, there was no opportunity to see both or all our multiples alive outside the womb, not even for a few minutes.  Lisa, Becky and I are among the fairly small minority who have even been able to hold both our babies at the same time, and to have a photo of us holding both of them, just once…(and Lisa and I among the tiny few who have brought our baby home for a home service).  It is very difficult to begin the grieving process and the process of learning to live with the death of each baby, when both or all have died, or of caring for one while grieving for another, when you haven’t been able to experience both or all the babies’ being here, in whatever way is possible, regardless of the timing of the death(s), and regardless of the condition of any survivors or of those who died.  This has an immeasurable, positive impact on longterm healing, marriage, and parenting of other children (or coping with infertility);  and we’ve seen over the years the many lasting negative impacts of not having been able to do so.

Even well-meaning advice from caregivers can be the opposite of what is needed:

We never saw Sean although we deliberated over it for days before the autopsy was performed.  Because he’d died days before and was in the company of an active brother, his body was deteriorating.  The pediatrician thought it may not be of comfort to see the baby that way.  He very kindly made copies of our last ultrasound pictures and suggested we had a living likeness of him with us, in Lucas.  Sixteen days later, we had a memorial service for him at the hospital, and dressing Lucas to attend it was very difficult.  I felt like I was dressing him up for his own funeral.  I don’t think I had really separated the two babies in my mind.

I still haven’t come to accept the fact that I never held Sean.  I had hugged them to sleep each night but I never got to hold them both.  I just wanted to wrap whatever there was left of him in a blanket and kiss him, and hold him, and tell him how much I loved him, tell him how much we were looking forward to meeting him, to sharing our lives together.  To tell him how much we were going to miss him and how sorry we were that he died.  I don’t think I would have been afraid of his decomposed body.  He was special and wonderful to me in any form.  He was my baby!  and not long ago he was a perfect little boy, growing and alive, as beautiful as his brother, though I knew he would not look like that now.  I was so happy to get his ashes.  I held the little box on my lap in the car and thought, we’re finally together in the “outside” world and how sad that a little cluster of ashes is all we have of you.

This mother continues:

I think about Sean many, many times every day.  For a long time I thought I could never feel happiness again, but I do.  I feel happy when I watch the relationship between our living sons and when I remember the excitement and joy of expecting twins.  I thought of things that might bring joy–another baby?  another set of twins?  No.  Not to lessen the pain of losing Sean.  Nothing can ever bring him back and Lucas will grow up without his brother at his side.  What I want most in this world can never be and I am heartbroken about this.  I do however enjoy my family with me now and I laugh at the antics of our two children.  The preciousness and brief time we spend together in the world has become even more evident to me.  I think I lost a great part of me when Sean died.  I will always feel that loss and I will always be thankful for Lucas.  I wish things had turned out differently.  I wish we were all together.  I hope to allow this experience to turn into a time of growth, to encourage my children to experience life to its fullest, to accept great sorrow alongside great joy, and to remember those precious souls of loved ones not with us now.  It is still so very sad.

As it happens, my Andrew died 8 years ago today, and tomorrow is their 8th birthday.  While time and support have eased so much of the pain, this still says it all to me.

(Editor’s note – the preceeding article was written in 1994, 8 years after Jean’s son Andrew died.)

(pictured 2nd to left at the 2004 National Perinatal Bereavement Conference)

Jean Kollantai, CLIMB, Inc., April, 1994 ©, …with special thanks to Eleanora Zeibin.

Jean Kollantai is the Founder and Executive Director of CLIMB – Center for Loss in Multiple Birth, Inc.  Her twin son Andrew died shortly before his due date in 1986.  For more information and resources, including parent to parent support and the CLIMB newsletter, please visit www.climb-support.org or e-mail Jean at climb@pobox.alaska.net

Tags: grief, hope