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Monitoring Survivors |
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Monitoring Survivors
Doctor Elizabeth A. Pector
Raising children is a tough job, even when good advice is easy to find.
Parents guiding survivors of a multiple birth loss find themselves
navigating uncharted waters without a paddle. To help us steer a bit
better, I have brought together medical and psychological facts, parent
anecdotes, and recommendations from experienced counselors who work
with bereaved parents and survivors.
Introductory cautions
We may never know whether medical problems or unusual behaviors in a
surviving multiple are related to the child's inborn genetic traits,
pregnancy or birth complications, physical or psychological trauma from
the loss, parenting style, or family grief responses. Psychological
relationships between intact sets of multiple children have not been
studied as thoroughly as one might expect. Psychologists' opinions vary
on the impact of womb experiences on children and adults. Many are
skeptical about the significance of losing a wombmate shortly after
birth. On the other hand, anecdotes and studies verify the importance
of these losses for survivors and their families. Each family needs to
draw their own careful conclusions after considering the information
that applies to their particular circumstances.
How often do twins vanish or die in the womb?
Between 1 in 2 and 1 in 5 pregnancies that start with two or more
fetuses result in a twin or triplet vanishing in the first 12 weeks. If
no loss occurs during the first trimester, death of one multiple later
in pregnancy occurs in 4-8% of twin pregnancies, and 11-17% of
triplets. Identical (monozygotic) multiples are at greater risk of
prenatal complications and loss than fraternal (dizygotic), mainly due
to placental problems and a higher rate of anomalies (malformations).
Male multiples have a slightly higher risk than females of dying during
or shortly after pregnancy. Looking at birth order of multiples,
the first multiple baby out of the womb has a slightly better chance of
survival than the second- or third-born in the same pregnancy, although
these differences have become minor since medical care for multiple
pregnancies has generally improved since 20-30 years ago.
What is the infant mortality rate? (How many twins or triplets die in their first year?)
1997 U.S. statistics revealed that 3.2% of live-born twins and 7.18% of
live-born triplets died in the first year. Most of these losses
occurred soon after birth. Prematurity contributes to many multiple
losses. Multiples arrive early much more often than singletons, with
half of twins and 9 out of 10 higher order multiples born before 37
weeks of pregnancy. The risk of SIDS is about twice as great for a twin
baby as for a singleton. Loss of both twins from SIDS is thankfully a
rare event, with fewer than one in 100 families who lose one twin to
SIDS at risk of a second heartbreak. Monitoring survivors of a
co-twin's SIDS death is still usually recommended as a precaution.
Medical consequences of twin loss
Medical studies show that death of a co-multiple before 16 weeks of
gestation generally does not result in any increased risk for the
mother, or for the survivor, during pregnancy. A recent study,
published in Lancet, revealed that about 20% of surviving multiples are
at risk for neurological problems or delayed development if their
co-multiple died in the womb. It is unclear how this compares to
intact sets of multiples, who are also at greater risk of neurologic
problems and developmental delay than singletons. Monochorionic
(one-placenta identical) surviving multiples are probably at greatest
risk of problems. Small studies have documented some fortunately rare,
but serious, side effects in the survivor after a co-twin's death in
the womb. These include brain, skin, kidney, gut or lung problems.
Luckily, the outlook is very good for most survivors, but it is
worthwhile to inform surviving child(ren)'s doctors of these findings
so they can be on the lookout for problems in your little ones as they
grow. Early intervention with therapy or special education can help
children with challenges make great strides.
What do we know about multiple interactions in the womb?
It is important to keep in mind that even genetically identical twins
don't have an identical environment, even before birth. Differences in
placenta circulation, fluid in the amniotic sac, and position in the
uterus make each child's stay in the womb unique. Ultrasound studies
can reveal differences in multiples' temperaments by the fourth month
of pregnancy, with clear differences even in monozygous ("identical")
pairs. Traits shown by each baby in the womb tend to persist after
delivery, including tendencies to be active or quiet, to have regular
or irregular cycles of movement, and to seek or avoid physical contact.
Intriguing ultrasound studies done by Alessandra Piontelli showed that
at 10-12 weeks, most monochorionic (one-placenta) twins, who are
usually separated by a thin membrane, respond to their neighbor's
movements. By 13 weeks, the dizygous (fraternal) multiples start
responding to co-twin kicks, and by 15 weeks, all multiples react to
stimulation by their wombmates. Patterns of interaction that develop in
the womb between multiples tend to remain similar after birth, until
about age 2-3, when other factors start to influence the twins'
relationship with each other.
Although these observations are meaningful for parents who try to
imagine how their children might have interacted, ultrasound findings
don't prove the existence of complex prenatal social relationships. We
know fetal multiples sense and respond to each other's movements, but
we can't know if they interpret these movements as a sign that they
have company next door. Detecting emotions such as love, jealousy, or
longing for one's co-twin isn't possible with ultrasound. Even newborn
twins often are surprisingly indifferent to each other. Some cry when
they are placed close together, preferring to have their own separate
corners of a crib. We do know that most survivors whose twin or
triplet "vanished" in the first trimester would not have been
physically aware of their co-twin in the womb before the early
miscarriage.
Some mothers who have experienced intrauterine loss of a multiple
report a period of peculiar, or increased, activity in the womb around
the time one baby died. Whether this movement was from the baby who
died or from the survivor is unknown, and doctors have not discussed
such reports in medical literature.
Are memories from the womb real and reliable?
I am aware of children (usually starting about age 4) and many adults
who report feeling unusually lonely after early loss of one or more
co-multiples in the womb. Some children were never told that a co-twin
or other co-multiples existed, yet state they felt sad inside their
mother or ask where their twin or sibling is. Some sets of two or more
surviving multiples have been overheard by their parents, again around
age 4, talking about their memories of the "good ol' days" inside mom,
including mention of co-multiples who died. Elizabeth Noble, author of
Having Twins, believes she herself is a survivor of the early death of
her co-twin in the womb. One mother of surviving multiples is a
counselor who uses hypnosis in her practice. She has verified the
accuracy of many prenatal or early childhood experiences recounted by
her patients. There may be something real in such reports--something
that scientific, analytical studies cannot easily identify. However, it
is still important to take a careful, skeptical approach, as my
counselor acquaintance does, and confirm as much factual detail as
possible before drawing any conclusions.
Controversial techniques discussed in Noble's book, including primal
therapy and hypnotic regression, produce troubling accounts from
patients who "relived," under therapy, prenatal emotional trauma
purportedly caused by the death of their co-twin. Prenatal awareness
and prenatal memory are just as controversial as the techniques used to
explore them. It is important for expectant parents who just learned
about the death of a multiple in the womb to try to put these accounts
in perspective. Even if there is some truth in tales evoked by hypnotic
regression, studies reveal that most adult surviving multiples are
psychologically well-adjusted, although some have a very real sense of
loneliness or something missing. (More on this later).
Selective reduction, conjoined twins, selective termination
Several studies have been done on couples who selectively reduced a
high-order multiple pregnancy from three or more fetuses to one or two
in hope of a better outcome for the remaining children. These studies
show positive psychological outcome in the parents, and no obvious
difficulties in early childhood for the live-born children. Several
sole surviving conjoined twins whose co-twin died during or after
separation surgery have also been reported to have satisfactory
psychological adjustment, although questions sometimes arise about
their unique birth, surgeries and co-twin's death. Psychological
studies of surviving co-multiples born after selective termination of
one abnormal fetus have not been done, but it is reasonable to expect
the outcome would be every bit as positive as the preceding two
situations. Careful counseling of parents in all of these situations
before any procedures are undertaken is imperative so they can be as
knowledgeable as possible about the possible physical and psychological
outcomes of any proposed treatments.
How can parental grief reactions affect children?
Most studies of multiple birth loss have focused on the parents' grief
reactions to loss. These studies reveal that parents grieve just as
intensely for loss of a twin as for loss of a singleton. The grief
process is, if anything, more complicated than singleton loss. One
obvious reason for this is that parents are trying to attach to an
infant while simultaneously mourning deeply. Parents also are working
through the loss of a special type of parenting (raising a full set of
multiples together). They may additionally be adapting to other
complications such as prematurity and special medical needs in
survivors. Parents have been known to reject a surviving child, or
alternatively might become smothering, overprotective and unreasonably
fear that the survivor will suffer illness or death. As with any child,
parents raising surviving multiples must strive to protect their
children from infection or injury while still allowing him or her to
explore the world, take risks, and learn from their own mistakes.
Parents who have lost a child, those who have been treated for
infertility, those raising intact sets of multiples, and those who are
raising premature or special needs children are all at greater risk of
depression than the average singleton parent. Marital problems are also
more likely in these situations. It is important for parents to take
steps to enhance their own psychological health. This will prevent
overburdening children with issues beyond their understanding, or
saddling them with feelings of inadequacy, failure or guilt. Our
children cannot, and should not, be our therapists. Some adult
survivors report feeling rejected by their parents because they were
not the same gender as the child who died, or feeling inadequate
because however hard they tried, as a single individual they could
never be "twins" to make up for their parents' disappointment.
Psychologists, survivors and bereavement organizations reinforce the
point that parents need to seek help for their own grief, for the sake
of their children's mental and physical health.
It is important to avoid idealizing the child who died. In this regard,
referring to a "guardian angel" or "angel twin" might have some
negative impact on a surviving twin whose behavior is less than
angelic. Many parents believe their deceased child's spirit is
guiding their survivor, and I myself have referred to my deceased son
being "with the angels and God." However, as children get older and
understand our words, we should make sure we're not unintentionally
conveying the message that the deceased child is perfect or better than
the child who lived.
Finally, it is wise not to burden children with decisions about final
disposition of their co-multiple's remains. Parents who have cremated
deceased multiples, or have buried them in a "Babyland" section of a
cemetery, wonder whether the surviving child should determine when, or
where, to scatter ashes or determine a final resting place for the
child who died. Some survivors may want to take part in such decisions
as adults, but it is probably best to spare younger children from these
choices. This issue hasn't been explored in professional literature,
but parents have wisely pointed out that it could be unhealthy to keep
cremated remains in a survivor's bedroom, or to place them too
prominently on a shelf in the home.
How do surviving children react to early twin loss as they grow older?
This question has received surprisingly little attention from
researchers. An ongoing study in Australia should give us more answers
about the medical and psychological effects of multiple birth loss.
Studies of surviving multiples have involved adults who had lost twins
at varying ages, and most of them actively responded to researchers'
public calls for surviving multiples who wanted to take part in
research projects. Virtually all writings about childhood survivors
report on small numbers of children. There are important limitations in
such data. For example, it is impossible to know without a systematic
survey whether surviving twins have imaginary playmates more often than
singleton children. Anecdotal reports might not represent the majority
of surviving multiples. Keeping these cautions in mind, the following
is a summary of what is known.
Nancy Segal found that female survivors seemed to consider their twins'
loss more significant than surviving twin men. Identicals in her study
seemed more affected by loss than fraternals. Betty Jean Case and Joan
Woodward noted the same trends in their interviews with survivors.
Anecdotes shared by a few dozen parents with me over several years, and
reported in print by Dr. Elizabeth Bryan, Elizabeth Noble, Eileen
Pearlman and others, indicate that some, but not all, surviving
children exhibit behaviors that are typical of children affected by
other types of loss and grief. A child's responses will obviously
depend on his or her age and ability to understand death and twinship.
Talking with survivors about the loss from the time of birth is
recommended by all authorities. Teens who are not told about their twin
until adolescence may feel betrayed by their parents' withholding of
vital information. However, other children told later about their twin
are only vaguely curious about their co-multiples, or even proud of
their newfound special history. Adults often find revelation of their
twin's death to be a relief, giving them a reason for their lifelong
sense of loneliness and incompleteness. When talking to younger
children, you can mention the dead child's name, and that you are sad
he or she died but also quite joyful that your survivor lived. Dr.
Elizabeth Bryan has recommended that parents avoid creating a "shrine"
for the child who died, although displaying photos or mementos around
the house is a helpful way to maintain awareness of the deceased
sibling.
In infancy, according to Dr. Eileen Pearlman, babies tend to absorb the
emotions of people around them. It is therefore important for parents
to get support for their own grief and to seek help from others to be
sure their surviving children's emotional and physical needs are met
during the time of the parents' most acute grief.
Some survivors have cried in a uniquely distressed way at the moment of
their sibling's death, even if it occurred miles away. Others actually
seemed to stabilize when a co-multiple died in NICU. Infant and toddler
twins have reportedly been very clingy, sometimes wanting to be held or
cuddled more often. A tendency for survivors to seek sleep or cuddling
positions that mimic crowding or positioning in the womb have also been
noted. Several parents have mentioned that their older infants and
toddlers will stand in the crib, staring into space or babbling to the
empty room. Mirror fascination starting at an early time in infancy has
been noted by many parents, especially those with surviving identical
twins. Sleep problems, including night terrors or nightmares, frequent
awakening, or wanting to sleep with parents or older siblings has been
mentioned by some parents. My son dances with his shadow, as does at
least one other survivor I've known.
Consistent, tender loving care is critical for your living multiples in
infancy. They depend on you and other adults to meet all their needs,
including nourishment, stimulation and affection. This can be hard to
provide if you, like some parents, feel distant from your survivor(s),
possibly even struggling with feelings of rejection or blame toward
them. Try to make sure that someone reliable will help care for your
infant's physical and emotional needs if you are unable to do so. This
may help minimize the long-term impact of parental grief.
Early childhood (three to five years old) is a time when survivors
still react strongly to their parents' emotions. They are developing
their own identity, show "magical thinking," and cannot understand
abstract concepts such as heaven and the permanence of death. Children
may think that they caused a death by wishing it, or might think their
parents can bring their dead sibling(s) back. They often don't clearly
understand what twins are until age 4, 5 or older.
Many parents of 2 - to 7-year-old survivors have observed their
survivors playing with a fantasy playmate of the same age and sex as
the child who died, even if they hadn't been told of the loss. Some
children complain of loneliness or sadness. Dreams about the co-sibling
by name (even if parents didn't tell the survivor about the twin who
died), and/or sightings of an invisible person or child in the bathtub
or on the stairs have been noted. Some solo twins may draw two people
in a self-portrait, or one person with parts missing. A few children
seem particularly drawn to intact sets of twins in preschool or daycare
as best friends and playmates. Others become angry at intact sets or at
drawings and photos of twins together, or tend to point out toys with
broken or missing parts. Children may ask why their twin can't come
visit from heaven to play with them.
Children need explanations about death to be as clear as possible.
Avoid confusing euphemisms, such as explaining that their brother is on
a long trip or is sleeping. Try to react neutrally to your child's
pretend play and questions about death. Avoid overemphasizing your
regrets about not being able to raise all your multiples together. A
survivor shouldn't be made to feel she is inadequate because there is
only one of her. Play with puppets or toys, and art activities, may
help children express feelings about their loss. Picture books and
early childhood books about life cycles may be useful. Introduce the
topic of twins or multiples and reassure your child he/she is still a
multiple, although this should not a major focus in interactions with
your young child. Cemetery visits or memorial rituals to honor the
deceased twin, can be included in a survivor's life early on, although
he/she may not feel sad or understand your own sorrowful feelings.
Middle Childhood (five to nine years old) brings greater understanding
of death, although magical thinking is still apparent. School-age
children can better understand abstract concepts, and can begin to
understand the complicated feelings of parents raising surviving
multiples (sadness at loss combined with gladness at having a living
child).
Children at this age sometimes want to discuss the facts behind a
sibling's death in great detail, often repeatedly, sometimes searching
for causes. Survivors may feel guilt, wondering why they survived or if
they caused their twin to die. Curiosity about what it would have been
like to grow up with a twin might be expressed. They might tell perfect
strangers either matter-of-factly or excitedly about their siblings who
died at birth, or they might hide the fact from all but a few close
friends.
Patience, availability, and willingness to answer your survivor's
questions honestly while not blaming him or her for the death are
healthy actions. Encourage creative expression of thoughts and feelings
in writing or art. Accept your child's decisions about how and when to
reveal their history. At this age, two surviving triplets can make
their own choice on whether to refer to themselves as twins or as
surviving triplets. Visits to a cemetery or memorial offer
opportunities for survivors to express their feelings by releasing
balloons, or leaving toys, drawings, or poetry. Don't be surprised if
they decide to run off youthful energy around the cemetery, as my
2-year-old surviving son and a 7-year-old surviving twin girl did a
couple of years ago, when they chased each other during a visit to the
twins' graves.
Pre-teens and adolescents may have difficulty verbalizing their feelings. They
understand that death is not reversible and are both fearful and
fascinated about it. They are preoccupied with establishing their
identity and very concerned about how they appear to their peers. A
tendency toward perfectionism, or feeling one has to "live for two" to
prove their worth to their parents, has been described by some
survivors in adolescence and early adulthood. There are many books
about death or special needs in a multiple-birth sibling available
(check with Dr. Pector for a book list), and reading fictional accounts
of similar situations may help children of this age explore their
complex feelings.
Adult survivors, as earlier noted, sometimes report a deep sense of
loneliness or something missing. Since they don't have conscious
memories of their twin, they may find it difficult to verbalize exactly
what they feel they're missing. Many have found it incredibly healing,
even in their thirties, to visit their twin's gravesite, to hear about
their parents' memories of the twin pregnancy and birth, and to be
given tangible mementos of their twin. Some survivors who lost a twin
later in life have felt liberated by not enduring constant comparisons
to their sibling, expressing a sense of freedom to develop as an
individual.
Closing thoughts
Many survivors have entered helping professions such as medicine,
ministry or teaching. They often show surprising empathy toward
others in need. Studies in the 1970s showed surviving twin children, as
a group, to be intellectually equal to singletons, while intact sets of
twins showed delays relative to their singleton peers. Although
surviving multiples may need to be watched for medical or psychological
difficulties, the vast majority will prove to be normal, talented and
sensitive individuals of whom we can be proud.
From www.synspectrum.com and http://multiples.about.com
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