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.
|
