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GUEST CORNER

The Emotional Impact of Stillbirth in a Multiple Pregnancy

Jean Kollantai

After the stillbirth of one of her twin sons, Jean Kollantai assumed she was alone in her grief. Within the year she met other parents, including Lisa Fleischer and Becky Crandall, and the network which has become CLIMB, Inc., the Center for Loss in Multiple Birth, was formed. Jean shares with us her personal experience and the collective insights of other bereaved parents of multiples so that we may better help parents who experience a similar loss.

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. 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 in a hospital bed after a c-section, holding one baby in each arm — both big and beautiful, but one alive, Berney, and one dead, Andrew, for no known reason. Andrew was buried on their due date, which was also my 37th birthday. His surviving fraternal twin Berney, who will soon be 8, is 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 "killer" eyelashes, high energy, and knack for being at the top of his class. Not a day goes by when I don’t wonder why Andrew couldn’t be here, too. 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 dealt with this being (as my aunt put it) "half of a broken set."

As founder and coordinator of CLIMB 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. Many, in a situation unique to multiples, have 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 the death of one or more babies after birth. Multiple pregnancy and its risks offer so many possibilities for "combinations." Some bring home four babies and wonder if the day will ever come when they don’t cry for the fifth. Others lose all two or three or four and come home to what my friend Becky, whose twin daughters were both stillborn at 37 weeks, called "the deafening silence" and an uncertain future at a time when they thought they had it made, a whole family. 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. Whenever the higher risks to twins or more are mentioned, it’s usually in terms of prematurity — 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 parents have been told by their medical caregiver that it is 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 higher risk of stillbirth comes as a shock afterwards to most parents. It is very difficult to accept that our babies did not get a chance 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 multiples would have survived had they been premature, when we thought we were lucky that they weren’t. Where was our "miracle"? For so many, technology brought us our babies, monitored the pregnancy, 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 considered in statistics, even though they were big, because they didn’t live outside for even a minute, nor their deaths considered a problem to be addressed.

When the stillbirth was in the second or earlier third trimester and followed by a premature birth of the survivor(s), parents must also cope with one or more babies struggling in the NICU to live. Whether or not the 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 at 4#9. 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."

—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 kind of parenthood. An enormous amount of excitement and energy is put into "getting ready", with expectation of an early delivery or bedrest. When one or more babies 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. 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. No matter how many more children I may have — I could have 10 more — my son would still not have his twin brother. Those who do have a living set of multiples find that they are a bittersweet, painfully vivid reminder of what they and, if they have one, their surviving multiple is missing. 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 to not even know why. It’s a long, hard mental struggle, 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 so many dead babies. Family, friends, and medical caregivers may 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 may happen in loss support groups as well, adding 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. Few parents in our situation have been able to hold their babies at the same time, or to have a photo of them together, just once. I am among the very few who brought our baby home for a home service. It is very difficult to begin 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. Experiencing our babies together after birth, in whatever way possible, has an immeasurable, positive impact on longterm healing, marriage, and parenting of other children (or coping with infertility). We’ve seen over the years the m any 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.

Jean Kollantai
CLIMB, Inc.

... with special thanks to Eleanora Zeibin

Bereaved multiple birth parents, professionals and others are encouraged to be in touch for Our Newsletter, our new article "Multiple Birth Loss and the NICU/Hospital" and other resources: P.O. Box 1064, Palmer AK 99645, 907/746-6123.

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