The Loss of a Twin or
Multiple in Childhood
Every year, more multiples
are being born. Sadly, every year there are many twin, triplet or higher babies
who lived past pregnancy and birth, and even past the higher risk of SIDS and
later complications, but then died after their first birthday from congenital problems,
illness, accidents and other causes. Tragically, everything that can happen to
take the life of a young child is twice as likely to come up in a set of 2
children, and three times as likely in 3 . . . 4 times in 4 . . . These
precious children leave behind heartbroken parents and a survivor(s) who had
been their companion 24/7 since birth. If you are having to cope with this
tragedy, we are very sorry -- and this is dedicated to these children and to
their surviving siblings.
Other bereaved families are
the ones who can most truly understand what you may be feeling now. The
following is from a mother 5 years after her twin daughter died in a home
accident when the twins were almost 2. She gave birth to twin boys 4 years
afterward. We hope her thoughts and those of other parents in this pamphlet
will give you some comfort and hope as you live through your grief and live
with the unique challenges of the loss of a child from a multiple birth.
It is almost 5 years now that
Kylee died. It has been hell, a lot of counseling and hard work to climb out of
hell and a lot of love from people that care about us to help us find our new
life that is full of blessings. People who meet me for this first time think I
am so lucky, and I say, "No, not lucky but blessed." It is still very
hard to explain to people about what happened but we do. Kylee is always our
child. I miss being the mom to a little girl, no barrettes (hers sit by my
computer), no Barbies fill our house. I still hope for another little girl someday
maybe via adoption.
Some days are still hard and
I cry terribly for her. Some days I remember that awful day she died and it is
unbearable. But then, I am called by one of the boys and I keep going for them.
I know she would want me to be a good mommy for them. I am writing a children's
grief book about our experience and hope maybe someday that will be helpful for
other families that have experienced this awful pain.
My heart still physically aches that Kylee is not here and not
playing with Kevin. He asked me recently if it was his fault Kylee died, Pam's
fault, or Kylee's fault that she died.
His questions come out of nowhere and I had to explain to him that is
was no one's fault, don't ever think it was yours, unfortunately Kylee died in
an accident. Those things still take your breath away, but we get through them
one day at a time. I still get frustrated when people say stupid things like,
"I could never live if my child died," and I have learned to say,
"Well, you don't have a choice!" I can't stop living. I have to be
here for Kevin, Cooper, Cole, my husband John, my family. Life goes on and the
best thing I can do is honor her life, her memory, and be a good mommy, a good
person and fill this world with joy and hopefully laughter, just as it would
have been for Kylee if she were here with me.
Grieving-wise, I still have a heavy
heart. But, I have mostly all good days now. Certain days are hard, all
holidays, Mother's Day, first day of school, last day of school, birthdays and
anniversaries are all hard. But we always do something to include Kylee. We go
to the cemetery; we call it Kylee's place. We were able to move Kylee out here
and she is buried at a beautiful cemetery in rural farm country (20 minutes
from our house). Moving her there from where we were in the Midwest was
extremely hard, like burying her all over again. But we have a family plot
where we have planted trees, roses, and flowers near her grave. We can sit at
her grave and see three mountain ranges. Foxes, bunnies, birds and squirrels
surround her there and Kevin gets a tractor ride from Mr. Miguel the
groundskeeper whenever we are there.
Probably the single most
prevalent cause of the death of a multiple in childhood that we have seen is
accidental drowning, most often but not always with children who are toddlers,
as well as freak accidents in the home and elsewhere. Many twin or higher
multiple birth children have also been lost to sudden illness, to cancer, to
congenital problems or the long-term effects of prematurity (now that
technology is allowing some children to live longer but yet is not always able
to "save" them). We have known a number of families who have lost a
twin or multiple child to SUDC, Sudden Unexplained Death in Childhood, the
death of an otherwise healthy child who is over a year old. Though statistics
do not exist (as far as we know) it is possible that childhood loss is somewhat
more prevalent for twin and multiple children because of the greater rate of
prematurity and of congenital problems and the possibility that young multiples
may be more at risk for some kinds of accidents (some have speculated though we
have no statistics). Either way, as with the other kinds of multiple birth
loss, there is the sad reality that anything that can come up with a singleton
child is more likely to affect a set. These children are usually the center of
their parents' world, and so many of them have been born after years of trying
to have a family. And even when there is a known illness, there is truly no
such thing as an "expected" death emotionally -- it is devastating for all
parents no matter what else, and no matter how many others survive, along with
carrying some very special challenges.
The loss of a young twin
There are many immediate
challenges:
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planning
for a service and burial
Most families recommend including the survivor, no matter how young he or she
is, because later they appreciate knowing they were there to say goodbye to
their co-twin. Many recommend that the survivor, no matter how young, have the
chance to see and spend time with his sibling at the funeral home or elsewhere
as many times as they or the parents wish before the burial or cremation, and
to place some special things with them of his and the parents' choosing. This
is less frightening than having it seem like their twin disappeared from their
life, perhaps without a chance to say goodbye or tell them something important.
Parents who are grieving and distraught can ask for help from close relatives
or friends with planning for the funeral and with helping their child with
this, and with helping their child at the funeral. Parents also may face, and
need support in, a painful decision of whether to purchase at the same time
another burial plot so that the twins can eventually be buried next to each
other.
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the
survivor Parents may
have a young survivor who is very upset by his twin's death, and may (for
example) have witnessed the accident that caused it. Some parents have had a
young survivor who -- like the parents -- was especially distraught at night
and had difficulty sleeping without the parents' complete care. In other
families, the child may not seem to "notice" or react just yet, but needs the
care of parents who are deeply grieving. It is important to communicate with
the child's physician, and seek the help of a counselor who is attuned to
bereavement in children. (The counselor, in turn, can consult by phone with
others who have experience with twin bereavement.) It can be especially
difficult to understand the reactions of preverbal and special-needs children,
and experienced counselors can have ways of seeing what the child is expressing
and suggesting what may be helpful. Again, it is important for parents to have
the help of relatives and friends in caring for young children while grieving
themselves.
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fear
for the survivor Parents
may find themselves feeling very protective of their surviving child, and
anxious about what may happen to him, especially depending on the circumstances
of the loss, and especially if the children were monozygotic ("identical")
twins. A family-oriented physician, a counselor sensitive to bereavement
issues, and supportive, trusted family and friends are very important here too.
(If someone is not sensitive or supportive, it's worth it to trust your
feelings and seek and find others who are.)
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dealing
with others Depending on
the circumstances, parents may have to interact with many others: media,
authorities, people who must be contacted about the death and the funeral -- along
with coping with the reactions of relatives, friends and new people. All of
these take a huge emotional toll and require support for the parents. Parents
are sometimes confronted by people who try to minimize their loss by saying
that they still have a child, or know what they would have looked like because
they were identical, and it is difficult to respond.
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immediate
decisions and realities in caring for the surviving child One mother writes, "We were confronted
with ‘the car seat' . . . oh my God, I can't tell how it impacted me when my mom
took out our daughter's car seat to make ‘room' in the car for another person
-- purely logistical but so poignant for me that even now I cry thinking about
it . . . it was just such a harsh reality. Also immediate was feeding our son
alone . . . whoever feeds their young twins separately? I remember throwing a
cup of yogurt across the kitchen and breaking down when I tried to feed my son
for the first time without her. It was unbearable -- and the same for bath
time, bedtime routines, you need help with those but at the same time you need
to keep some things the same for your survivor but also change some because
they are so painful. We still sang and read books to him as much as we could,
but we could NOT give him a bath. His dad started giving him a shower instead,
since we could not bear to bathe him in the bathtub alone. Having help or
someone staying with you helps this. Then there were all those firsts: going to
the grocery store with one child, buying clothes, going anywhere where you
brought them both is incredibly sad, overwhelming, and there's no getting away
from it . . . parties, vacations, trips to the hospital can all cause huge
panics, overwhelming sadness, and in a way isolation, because you just can't
absorb all that pain every day."
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physical
reactions One mother
said: "One of the immediate challenges was the physical ache for my child. I
felt that a part of me was actually missing, as I imagine so does the surviving
twin. Truly my body and heart ached for her for a LONG time -- years actually,
but you really don't know how to process this at the beginning." Sleep
difficulties and difficulties functioning normally physically are also likely
for parents over a period of time.
.
. . and then:
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the missing twin One of the biggest challenges, during and after those first
days, is what some have called having to adapt to a one-baby or one-child life,
or (if there are other siblings) a family without "the twins." You will always
be the parents of twins: but deciding what to do about sleeping arrangements
for the surviving child . . . what to do about all the things of the twin who
died . . . going out as what seems to be an ordinary, singleton family . . .
seeing your child play alone . . . changing the way you did so many things
because there were two . . . all of this and more are major, heart-wrenching,
ongoing challenges for parents and families. Parents stress that it's very
important that these decisions about the child's things be family decisions,
and not to permanently remove things immediately. The feeling of seeing half of
what once was a whole, the feeling of half of a broken set are of course very
common, along with being concerned for the survivor and what he is or may be
feeling. There are also the constant reminders, especially for parents of
identical twins who constantly see the image of who they also lost. With twins,
most photos tend to be of both of the babies or children together, and there is
really no way, even if parents wanted to, to go back and make "history"
different . . . How to display photos, and if, when and how to let others know
that their child is the survivor of twins and of a tragic loss, is a major
challenge.
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loss of "our twins" Loss of being the parents of twins in the eyes of society,
and of people who don't know the family, is also huge. At the same time, many
mothers are involved in twins and multiples clubs, and find it a major
challenge that now all their friends have living twins. Other mothers of
multiples can empathize almost better than anyone else, and clubs can provide
vital support, but it is difficult too. Many mothers find themselves realigning
their social world and their support networks at a time when they are already
feeling isolated and challenged emotionally and spiritually, and when what used
to be the simplest thing can be a struggle.
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the survivor An ongoing process is talking with the surviving twin, and
relating to all of his emotions and his questions, which will depend on his age
and developmental stage at the time of the death of his twin, and then come up
again and again in different forms as he grows and goes through more
developmental stages. The mother whose twin daughter died at age 2 in a home
accident shared the questions that her daughter's twin brother asked then and
in the coming years:
Questions Kevin asked after Kylee died
Why do some sisters have to die?
Why can't Kylee come down from heaven to
play with me like Mary Poppins does?
How did Kylee get to the church (for the
funeral)?
Why did Kylee go away at church (after
the funeral)?
When/how did Kylee go to heaven?
Why did Kylee's body stop working? How
did she get stuck? Why couldn't the doctors save her?
Was it my fault Kylee
died? Was it Pam's fault Kylee died? Or was it Kylee's fault?
What does Kylee do in
heaven?
Is your heart cracked
because Kylee died?
When will I get to see
Kylee again?
Why did you have
to put her body in the ground? Can't we dig it up and get her?
Why do you have Kylee's picture on those
papers for the Giving Tree?
The same mother also writes: "You just
feel like life is a fog. Everything is changed, and it never is the same. It is
really a sad, lonely, isolating few years even with TREMENDOUS support and
doing all the right things (counseling, Compassionate Friends, etc.). You spend
a lot of time trying to make sense of what happened; you just feel no grounding
for a long time. I think it is best to listen to your instincts about when you
are overwhelmed or too tired or too sad. A lot of rest and healthy diversions
are needed."
A little further on . . .
We have the impression that the initial
adjustment period -- the painful, complicated time involved for the family and
surviving child to begin to adapt and regroup to the loss and to the changed
family and be able to cope with the ongoing challenges -- is something like one
to three years
And even then there are the ongoing
challenges, "what abouts":
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birthdays -- especially the first one, and especially if
the birthday falls not long after the anniversary of the death. It can be
really helpful to talk with others and see how they dealt with them. We have
the feeling that for the first birthday after the loss, especially if it is not
too long after, an appropriate goal for the parents and for the surviving
child(ren) is just making it through. After that, traditions start to evolve in
the family about how to include the child in some way who died while honoring
and celebrating the living child, depending on what the living child needs and
wants at that time. It can be really helpful for parents to take the day before
the birthday to focus on the child who died, and to do anything that they want
to in relation to that child (including feeling as badly as they want without
having to put on a good face, and to do nothing else all day if that's what
they prefer).
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Of course, much of this goes for holidays too, and it
is especially difficult if Christmas or another special day is around the time
of the loss. It is really important that parents make decisions about how thing
are done, and be honest about what their emotions and needs are, rather than
going with pressure from others to ignore the child who died. Many families
have special traditions they follow to include and honor the memory of their
missing multiple.
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counseling for parents Sensitive counseling by a counselor
attuned to bereavement issues has been really essential for almost everyone
we've known, and especially if there are some special sticking points like
guilt and self-blame (as there often is in accidental deaths) . . . Many
parents recommend it as an "insurance policy" on coming through it all
emotionally healthy, no matter how much other support there is. Some have been
helped anti-depressants, though we don't know anyone who felt helped by them if
they were not also accompanied by "talk therapy."
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Most parents have found that they needed and benefited from marriage
counseling. Men and women tend to grieve differently, and even when they
don't, it is all a heavy burden for a marriage or relationship. With multiples,
one parent may tend to focus on the child who died, and the other on the
child(ren) who lived, and that can make things complicated too.
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counseling for the surviving child Many children have been
helped by a counselor attuned to children's bereavement. Some have used a
technique involving sand tray play with miniature people and objects to bring
out what the child is experiencing and learn what would help most. Sometimes a
local counselor can consult by phone with another therapist who is experienced
in the "multiples" aspects if one is not available locally. More local programs
for grieving children are being established and many children (including the
little boy who is quoted above) have been really, really helped by
participating in one for several years, and in summer camps and other
activities for grieving children. A girl who witnessed her twin brother's
drowning when they were 8 was helped by regular counseling and participation in
summer camps and other events for bereaved children. The child may need to
revisit therapy as needed if he or she is having trouble in school or
reexamining aspects of their twin's death because of entering a new
developmental stage. This counseling can also help parents know what is
helpful. One mother writes, "We were told by several professionals to keep her
things out, make a picture book for her twin, let him see, feel, touch her things
when/how he wanted. We did this and he went to it when he needed/wanted to."
Another mother says that one of the things that helped her son, whose twin
sister died when they were 10, most of all was when he met another surviving
twin teenage boy.
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support groups Many parents and grandparents who have lost a young multiple
have immensely benefited by participating in a chapter of The Compassionate
Friends or a similar group for the loss of a child (as opposed to pregnancy,
birth, infant loss). All bereaved parents have so much in common, no matter
what else our circumstances. We recommend checking out a group in advance by
talking to the leader. These groups can also be a valuable source of other
referrals in the community, including experienced grief counselors, and a
source of resources such as books for bereaved parents.
and:
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the family -- whether or not it is possible to have another
child or children and if so, whether or not to do so. Some families gave birth
to their twins at an age when they were grateful to have them as their entire
family, or as the final additions to their family, and are now at an age when
childbearing (and also often adoption) is usually not possible. Others face
decisions about trying again, including with fertility technology, and then
about whether they may have twins or higher multiples again. (If they do, there
is the challenge of their survivor seeing what he is missing, and of others
needing to know that these are the family's second set of twins.)
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how to incorporate and remember the child in
the life of the family for all the years to come . . .while relating to the
survivor's feelings, and to the many landmarks that come along, whether it's
the first day of school, or so many other things. As the living child gets
older, his relationship to his twin and the death of his twin, how important it
all is or not to him, becomes more of a determinant in what the family does,
and in most families this all evolves over time as well, and can change
constantly as children go through developmental stages and life events. With twins and multiples, there are some
special challenges: when families talk about the birth of their surviving
child, it is "when they were born," and what it was like when "they"
were babies; photographs of the living child almost always include their twin,
and so the twinship can always be an issue including with people who didn't
know the surviving child or family before their loss. It's not really possible
to not have the child who died not in the family history even if anyone wanted
to do that, and yet it is a challenge of how to relate to others about the
co-twin and the loss in so many different situations, and for the surviving
child to do so.
From what we have seen over the years, we
think that that the overall process of being in a "new normal" life that is
truly satisfying -- even though the child will always be dearly missed, and
even though the parents will never be the same, "innocent" people that they
were or as if the death of their multiple birth child had never happened -- is
5 to 10 years, depending on a lot of these variables. At the beginning, that
seems like an impossibly long time . . . later on it doesn't really . . .
Loss of a young triplet (or quadruplet or
more)
Almost all of these things are also true
for families with the death of one of their young triplets . . . but with some
challenges from having multiple surviving multiples. It can be even more
important to have the support of a caring physician, a sensitive counselor, and
helpful relatives and friends in coping with the physical, emotional and other
challenges while caring for the living children and for their needs in relation
to the loss of their co-sibling. We have the impression that the period of
acute grief and depression may be even longer for these parents, especially the
mothers, because of their being stretched out, pulled in many directions by the
care of the other children.
If the child who died was an "identical"
(monozygotic) twin to one of the living children, there may be more concerns
about how that child is relating to the death, and about his or her health and
safety, than for the other, fraternal child. No studies have been done, but it
is possible that the identical child is even more deeply affected than a
fraternal survivor -- but it could be the reverse, depending also on gender and
relationship issues. The child who died may have been a special needs child
after prematurity or other complications, and everyone may have had a "special"
relationship to him or her. Or he or she may have been the healthiest of
triplets who had been premature, and the loss was a special shock.
It is very difficult for most parents to
go from the special status of being the family of triplets/high order multiples
to appearing to be a family of "just twins"; and if the parents are members of
a group for high order multiples, there are issues similar to those of twins
parents with twins and multiples clubs. As the living children grow and
develop, they may each have different feelings at different times about their
lost sibling, and about whether they wish to be known as twins or as surviving
triplets (or both depending on the situation). They may have different feelings
about whether and how to include their sibling who died in their birthday, just
as they may have feelings about whether to have a separate or joint birthday
celebration with their living co-multiple.
Because the surviving children are
multiples, and usually visible as multiples to others, there can be many daily
challenges. One of the most difficult for all who have lost a high-order
multiple is whether to allow their living children to be called, or known as,
twins instead of triplets, or triplets instead of quads or more; and if not,
whether to always refer to them as surviving triplets, quads or more. This is
an intensely-felt issue that has so many dimensions, and families' ways of
relating to it tend to evolve over time and experience. Another is events such
as photographs: some families who have lost a young triplet always include a
special teddy bear with the kids in their annual photo portraits.
Remembering
All families -- twin, triplet and higher,
and no matter at what age or circumstances their child died -- have found that
with time, they have mementos and remembrances, and ways that their child is
always part of life. Some of these are: website posts, annual memorials,
sending balloons to heaven, money to charities in their name, a bench in their
name, a plaque, a rose garden, making stepping stones together . . .
butterflies and candles at special milestones like graduations. Some families
have founded annual walks and charitable foundations in the name of their
child, with the participation of their surviving children. Some have become
active in bereavement support. One mother, who lost her twin daughter when the
children were 10, had the opportunity to sit and talk with a number of others
who had also lost a child who was a twin or triplet and writes, "We also spoke
about the answers we give to ‘how many children do you have?' For some it was
natural to mention their child who died, for others it depended on the
situation and who was asking the question. But we all agreed that we always
remember our precious children."
There are no published studies, and few
resources in this area . . .we very much hope that there will be some, as well
as more mental health professionals' becoming knowledgeable in it. Some of what
does exist, and some personal stories by parents, are included in CLIMB's
website . . . A national and international parents' support group especially
for the loss of a multiple in childhood is very, very much needed and hoped
for. This article relates to the loss of a multiple who is about 10 years old
or younger -- information, research, resources and support are also intensely
needed for the loss of a multiple in adolescence, teens and young adulthood.
Jean Kollantai,
Center for Loss in Multiple Birth (CLIMB) Inc., September, 2007
With thanks to Traci Lillich, Pam Bennett-Santoro (parents)
and Elizabeth Pector MD (editor)
© Center for Loss in Multiple Birth, Inc.
P.O. Box 91377, Anchorage, AK 99509
(907) 222-5321
web: http://www.climb-support.org
e-mail: climb@pobox.alaska.net
Some pamphlets are also available in Spanish and other
languages. Please contact CLIMB for additional information.
