For most parents, the ideal birth experience is a
full-term health pregnancy with one or two babies, and bringing healthy
children home in a few days. When many parents learn they are expecting twins
or more, worries about premature birth, and loss of one or more babies, loom
large. The outlook for most multiples is fortunately quite good, with the vast
majority of multiple-birth parents eventually bringing all of their babies
home, even if they arrive early.
What can parents expect when they do suffer losses
during or soon after a multiple pregnancy? They may need to make tough,
practical decisions first, then begin the hard work of grief--adapting to life
without the outcome we expected. Grief for loss of a fetus or infant is a
highly individual process, different for each bereaved person who must slowly
weave the experience of loss into his or her life tapestry.
Mourning is complex when a multiple dies. There are
many possible loss scenarios. Parents may grieve not only for children who
died, but also for their past fertility problems, the premature end of
pregnancy, and disability or health problems in survivors. Whether some of the
babies survive, or whether parents' arms are devastatingly empty, mothers and
fathers have lost the dream of raising all of their children as a set--the
prestige and privilege of parenting twins, triplets, quads or more. Many
parents find it painful for years to see healthy, intact sets of multiples in
public. Parents may need more than the usual amount of time and empathy to
cope.
Several studies show that mothers and fathers feel a
similar intensity of grief and use similar coping strategies after
multiple-birth loss. Yet differences, such as longer-lasting sadness in mothers
or distraction through work and recreation in fathers, also exist. A good
discussion of these issues is in Deborah Davis’s book, Empty Cradle, Broken
Heart. Learning about typical gender differences in mourning can help a
couple avoid misinterpreting each other’s behaviors, especially when they are
also dealing with infertility, long hospitalization of a preemie survivor, and
other issues.
The Center for Loss in Multiple Birth, http://www.climb-support.org, has been
working for 13 years to support parents and professionals affected by multiple
birth loss. Anyone suffering a loss in multiple birth is strongly encouraged to
contact them for empathetic advice tailored to their needs. Lynda Haddon of
Multiple Births Canada, www.multiplebirthsfamilies.com,
has likewise aided bereaved parents of multiples for over a decade. Her
leaflet, Loss in Multiple Birth, http://www.multiplebirthsfamilies.com/articles/ber_q1.html.
outlines some of the important things parents can get and ask from their
caregivers.
Families have a short time to create priceless memories.
A keepsake box with mementos of each child, including ultrasound or photo
images of all multiples together, prenatal monitor strips, clinical items used
for a preemie’s care, caps, clothes, blankets, crib cards, ID bands, hand- or
footprints, hair or fingernail clippings, should be offered after birth by the
hospital.
The most valued mementos are often images or sketches
of all babies together. It is important for parents to have a chance to see and
hold all babies together, at least once, or to be with them all in the same
room if survivors can't come out of their isolettes. Parents who lose their
entire set of multiples also need individual photos and mementos of each child
to show each one's uniqueness; they have not lost a "combined baby,"
but two, three or more cherished lives. Even if parents or caregivers feel
squeamish about placing a deceased baby next to a living one, most parents are
glad later to have these memories. Without these experiences, parents may feel
denial or confusion. In my case, it didn't seem that I had truly given birth to
twins since I never saw my living and deceased babies side by side. Another
woman who did not see her stillborn twin felt she was dressing her survivor for
his own funeral instead of his brother’s memorial service. Some cultures
discourage contact between the dead and the living twin. Parents who do not want them together need to
inform their caregivers so their wishes are respected.
It is vital for parents to learn as much as possible
from their medical professionals about the cause of loss. Autopsy and analysis
of the placenta often reveal a great deal, even when death happened long before
delivery. Autopsy is done with respect,
and there is usually not much change in the appearance of the baby’s body.
Certain tissue samples must be obtained promptly to maximize the information
learned, but a full autopsy can be delayed for a day or two if the mother is
very ill and wants to see the baby before the procedure. Some parents refuse
autopsy unless it will help their surviving child or other babies with a
similar condition.
A conference with doctors a few weeks after delivery,
when test results are back and parents are less stunned, gives families the
best chance to hear and remember crucial information about their child’s
death. A list of questions and a notepad
are essential tools. Parents often ask
if such a tragedy could happen again, if there will be any long-term effects of
the loss on any surviving multiples, and when they can consider another
pregnancy.
Sometimes, even with written notes, a parent’s memory
gets confused. New questions may pop up months or years later, perhaps when
planning another pregnancy. Parents may just need reassurance that they or the doctors
made the best possible decisions. Parents need not be afraid to contact doctors
for additional answers and discussions. While information can be found
elsewhere about the conditions that led to death, the professionals who treated
the child are best able to answer specific questions, taking into account the
child’s and family’s unique factors.
Important choices must be made for final arrangements
when one or more multiples has died. Some parents are simply too overwhelmed to
make these decisions themselves. A trusted relative or friend can then discuss
the available choices with a hospital bereavement counselor or clergyperson.
It is hard for some parents to make final decisions
for deceased child(ren) when their sick survivor(s) are clinging to life. Some
choose to wait until surviving babies’ outcomes seem clearer. If other multiples die, these grieving
parents find a small sense of comfort in knowing their children are together in
death. However, most parents with survivors prefer to finalize arrangements for
the deceased baby within a few days. They can then focus positive, hopeful
attention on their living children. It is normal for parents to feel guilty
about leaving a survivor’s side, even for a brief memorial service for the
equally loved sibling.
It can also be difficult to decide what to do for
a "fetus papyraceous," a fetus
who died in the womb between about 12 and 20 weeks gestation. This fetus is
often identifiable in the placenta or in its own sac when its multiple siblings
are born after a prolonged pregnancy. Parents must clearly let the hospital
know their wishes for final disposition. Private burial and cremation are often
preferred, and are not extremely expensive. Another option is hospital disposal,
which is like cremation, but the dead fetus's body is not separated from other
hospital tissue samples, and parents will not be able to get their child's
ashes. Some hospitals offer periodic group burial of miscarried fetuses when
death occurs before 20 weeks of pregnancy, or when a stillborn baby weighs less
than one pound. The group burial site may be marked (although not with an
individual headstone), and a ceremony may be held at the time of burial or
annually.
A family clergyperson or hospital chaplain can be
called for a special blessing, urgent baptism of a dying child, or a religious
service after death. A service that recognizes all multiples as an intact set
can be very healing. Some parents combine a memorial service for deceased
child(ren) with baptism or dedication of survivors, either in the hospital or
long after birth. There are services
that can be developed to recognize the desire to baptize deceased children;
some are available in Not Out of Mind by Althea Hayton http://www.wrenpublications.co.uk/.
My
website, www.synspectrum.com/multiplicity.html,
lists abundant resources for complications in multiple birth, including loss.
Organizations, publications, websites and Internet support groups offer help
for any scenario imaginable. For online support, ELIMBO, LAMBS, and Multiple
Angels Network are among the larger. http://www.tamba-bsg.org.uk/contacts.htm
lists some
In addition to specific resources in this article,
many books on perinatal loss are available through organizations listed below
and through online booksellers. Deborah Davis' Empty Cradle, Broken Heart
has been cited by many parents and has excellent advice for parents who have
suffered multiple birth losses.
Organizations:
SHARE www.nationalshareoffice.com
Compassionate Friends
www.compassionatefriends.com
The Centering Corporation www.centering.org,
Perinatal Loss in
Pregnancy and
SANDS (Stillborn and Neonatal Death),
Professional
resources (and for interested parents):
CLIMB articles: Multiple Birth Loss and the Hospital
Caregiver, and articles for counselors in loss of one or loss of all multiples.
Multiple Births Foundation: booklets on bereavement,
multiple pregnancy and special needs in multiples
Dr. Pector & Dr. Smith-Levitin's articles in The Female
Patient and in Seminars in Neonatology on loss in multiple birth. We have also
coauthored a chapter in Dr. Louis Keith and Dr. Isaac Blickstein’s forthcoming
revision of Dr. Keith’s classic Multiple Pregnancy book.
Limbo and Wheeler's When a baby dies: a handbook for healing and
helping.
James
R. Woods, Jr. and Jenifer Esposito Woods, Loss During Pregnancy or in the
Newborn Period
Michael Berman’s book Parenthood Lost and his
website, www.hygeia.org
When grieving parents are patient and gentle with
themselves, communicate honestly with each other and with caregivers, and seek
professional help and peer support when needed, they maximize the chance of a
gradual, healthy adaptation to their child(ren)'s sad death.
A
very thoughtful photo booklet by Judy Kidder, The Special Brother,
explains to young children from an older brother's point of view the death of a
newborn twin, the parents' sadness, the funeral, and the continued importance
and special status of each child in the family. Kidder is the grandmother of
twins, one of whom died after surgery.
Suggestions to parents on how to explain death to their children are found in:
·
Dr. Sheri Siegel's compilation of developmental stages of grief, http://www.synspectrum.com/childgrief.doc.
·
Elizabeth M. Bryan, Twins, Triplets and More.
·
Eileen M. Pearlman and Jill Alison Ganon, Raising Twins : What Parent Want to Know (And
What Twins Want to Tell Them).
·
Elizabeth Noble, Having Twins.
Support for adolescent or adult surviving multiples is
available through the Lone Twin Network in
Support
for parenting surviving multiples is available through CLIMB’s group SNAPS
(Special needs and Preemie survivors) and through specpar (www.groups.yahoo.com/group/specpar.)
Many specpar members carried quadruplets or quintuplets. Some specpar parents
have not suffered losses, but many have. The group is somewhat inactive, but
does respond to questions from new members. My special needs article,
“Parenting special needs multiples,” also offers some practical tips.
The silence is deafening when all babies die, as a
mother of 37-week stillborn twins remarked. The sense of grief, failure and
depression can be especially overwhelming if the multiples were conceived after
long, expensive treatment for infertility, or if parents endured a complicated
pregnancy or a long stay in the neonatal intensive care unit (NICU). Grief may
be more intense than for loss of a single child. The parents, after all, lost
two or more unique babies. Mourning might also go on longer than after a
singleton’s death. Two books that poignantly describe the depth of grief and
challenges of life after both twins die is Christine Howser’s A Different
Kind of Mother from www.1stbooks.com and
Donnali Fifield’s William and Wendell available through www.timestwopublishing.com.
When some, but not all, babies die, parents face an
emotional paradox: grief, hope and joy together. Mothers may feel
confused--that they delivered one baby, half alive and half dead; or had two
separate pregnancies with different outcomes, instead of twins. Parents, and
those around them, may expect survivors to make up for the loss and eliminate
sorrow. They bring consolation, but are
not compensation. Jean Kollantai of Center for Loss in Multiple Birth has
remarked that no person can replace another, even a genetically identical
individual born at the same time. Most parents feel their surviving multiples
are a source of joy...yet sadness may persist indefinitely. Occasional parents
even feel resentment or blame toward survivors.
The sorrow for losing one twin or triplet is just as
intense as when a singleton baby dies. For some families, sadness dominates,
and parents are afraid to bond to a survivor because he or she could also die.
Other parents are so busy with preemie survivors, or even a term baby, that
grief is temporarily put on the back burner. Some of them feel guilty that they
don’t feel sad enough about the loss during these months. Delayed or
interrupted grief is a normal reaction to a very unexpected multiple-birth outcome.
If a survivor will be in NICU for a long time, parents
must tell caregivers how much they want to discuss their loss, if at all. Some
deeply want to talk about children who died, while others, in the words of one
parent, "keep grief in a shoe box under the bed" while concentrating
on the complicated course of their survivors. Parents also should clarify with
staff what they want surviving children to be called, and what labels they want
on isolettes, e.g. triplets B and C, or Bryce and Caitlin Jones. Death of one
triplet doesn't create a pair of twins. Most parents consider a living multiple
to be one of the original number conceived, especially after a late pregnancy
or newborn death. One mother of quads
feels she has B and C without A and D…two of her children will always be
missing. Some parents, however, do call two survivors twins, especially after
an early pregnancy loss.
Each parent finds his or her own way to cope with the
emotional tug of war deep in the heart. Most authorities who work with bereaved
parents of multiples say the sadness must eventually be faced...but it can take
a few years for parents with premature or special needs survivors to have
enough emotional energy to mourn for their child(ren) who didn't survive. Amy
Tracy’s article, A Silent Sorrow, from Twins Magazine is a good review of
typical parents’ feelings (including my own). http://www.preemieparents.com/articles/silentsorrow.htm.
One practical concern is how to announce the birth.
CLIMB has sample birth announcements which have proven helpful to newly
bereaved families trying to find the right words to express their mingled joy
and sorrow.
Parents may face hard choices in their quest to build
a family if they had difficulty conceiving before their multiples. While
heartbroken, they must decide if they can physically, financially and
emotionally go through assisted reproduction or pregnancy again. Some may need
to try again quickly due to their age. Others will be unable to try again, and
need to consider other options such as a surrogate mother, adoption, foster
care, or a child-free lifestyle. Resolve, http://www.resolve.org/,
and Inciid, www.inciid.org, two national
organizations for infertile parents, offer peer support and information on
these options.
Some parents crave a chance for a repeat multiple
pregnancy, while others are terrified of the thought. It is important for
parents to realize that no other baby, including even other multiples, will
make up for the previous loss, although they may bring some joy and healing to
bereaved parents. CLIMB now includes many families with "multiple sets of
multiples," with various outcomes including loss. Online groups also help
parents deal with anxiety following a multiple pregnancy loss.
In
the sections below, each circumstance discussed is accompanied by resources and
suggestions.
With more than one fetus in a
pregnancy, situations quickly become complicated.The threat of loss hangs over
parents for days weeks or months in some high-risk situations. The anxiety can be draining. Parents should
seek whatever support they can from family, friends, medical caregivers,
community and clergy. Other help includes:
Most parents, especially those who were very worried
about carrying two, three or more babies to term, adjust well to the
reabsorption of one fetus in the early weeks of pregnancy. However, parents who
greatly wanted twins, or who knew about all of the fetuses soon after
conception and saw them several times on ultrasound, may feel some grief.
During the rest of the pregnancy, these sorrowful feelings usually ease.
Parents have time to choose if, and how, they want to memorialize the fetuses
who died early. They may or may not want
to consider the ongoing pregnancy to still be twins, triplets or more. Lynda
Haddon offers some thoughts on Vanishing Twin Syndrome at http://www.multiplebirthsfamilies.com/articles/ber_q10.html.
Medically, a fetal loss before 16 weeks does not
appear to put the mother or surviving fetuses at any greater risk. There may not be much fetal
tissue identifiable at the time of delivery when the death occurred before
10-12 weeks. Most parents choose to have the hospital arrange for disposition
of fetal tissue with the placenta after delivery of surviving babies. Doctors
and pathologists need to be notified after birth if parents want them to search
for a fetus papyraceous so private disposition arrangements can be made.
For parents who feel strong sorrow after early
pregnancy loss, it is hard to express feelings when there is little tangible
evidence of loss. Some parents name the fetus, and remember with the help of an
early ultrasound photo showing all fetuses together, scrapbooks, poetry,
journaling, memorial websites or gardens, angel figurine collections, or a
sketch of the surviving baby(s) with an angel or other symbol for the deceased.
There is controversy about the psychological impact of
a vanished twin on survivors. From ultrasound studies by Piontelli, we know
that one multiple fetus does not respond physically to a co-multiple's
movements until about 12 weeks in a monochorionic pregnancy (one placenta, with
thin membranes between fetuses) and about 15 weeks in a dichorionic
(two-placenta) pregnancy, where the membrances separating twins are thicker.
Although some adults whose co-twin died early in pregnancy consider themselves
emotionally traumatized, most research does not suggest this is common or
inevitable. The remaining babies have an excellent chance of healthy life and
near-term delivery. For the mainstream viewpoint, see Joan Woodward's The
Lone Twin and Nancy Segal's Entwined Lives. For the controversial
viewpoint, see www.vanishingtwins.com, Elizabeth Noble's Having Twins, OPPERA
http://www.oppera.org.uk/ and William Emerson's writings on prenatal and
perinatal psychology, http://www.birthpsychology.com/healing/point2.html.
Regardless of one's opinions, a positive parental attitude and consistent,
loving care in infancy go a long way toward nurturing the mental health of
survivors.
Some parents face the unthinkable dilemma of being
pregnant with "too many" after years of being unable to conceive. The
option of reducing the number of fetuses, through multifetal pregnancy
reduction at 10-12 weeks gestation, permits a better outcome for a pregnancy that
otherwise might have been doomed to complete miscarriage, extreme prematurity,
neonatal death or severe disability. Knowing that results are better for a
smaller number of fetuses does not make this an easy choice, and decisions
often must be made quickly.
For information about the procedure, see ASRM's
pamphlet, http://www.asrm.org/Patients/FactSheets/Multiple_Gestation-Fact.pdf,
and Dr. Tal Rapaport’s booklet, The Dilemma within a Miracle,” available
through her at empathy4me@yahoo.com.
An essay by Vicki MacLeod on factors considered by parents is available through
loss@multiplebirthscanada, and a
similar thoughtful essay by Dr. Deborah Davis is available through CLIMB.
The procedure itself distresses many parents, and
grief reactions are fairly common for about a month in most cases. A minority
of couples in some studies--about one-fourth to one-third--had anniversary
sadness one to two years after the procedure. The vast majority of parents feel
they made the right decision, even if a complete miscarriage occurred after the
procedure, a possibility in 5% or more. Many parents are quite private about
the reduction and tell no one, including immediate family. For thoughts on
whether to tell surviving multiples or others, see Dr. Rapaport’s The Dilemma
within a Miracle, and Lynda Haddon’s article at http://www.multiplebirthsfamilies.com/articles/ber_q11.html.
One woman told me she planned only to tell her surviving children that other
babies had died before they were born…without mentioning that it was during the
same pregnancy.
Parents sometimes ponder the sex or appearance of the
reduced babies when they give birth to the remaining singleton or twins. They
may wonder if they should have reduced at all, or to a different final number.
Like many other decisions in multiple birth, parents would like to know where
the other fork in the road would have led…and there is, unfortunately, no way
to be sure.
Lynda
Haddon’s article, I Am Pregnant With Twins. One Is Alive, One Is Not, http://multiplebirthsfamilies.com/articles/ber_q14.html
summarizes the emotions and options parents face. Lynne Schulz's book, The
Diary, journals a mother's long hospitalization after one twin died in the
womb.
It
is common for parents continuing a pregnancy after one fetus's death to feel
isolated, fearful, or freaky. Some parents grieve deeply and continuously until
delivery and have trouble attaching or feeling hopeful toward remaining babies.
Others push grief aside until after delivery, concerned that their grief could
trigger labor or hurt the living babies still inside. Most parents feel
distress initially, then compose themselves enough to consider options more
calmly. In addition to Lynda’s excellent article, CLIMB provides a newsletter
with articles by parents who have faced this scenario. Some parents find it
helpful, while still pregnant, to contact CLIMB and communicate in online
networks such as ELIMBO to get support for prenatal loss of a multiple.
Possible
choices include:
·
Obtaining ultrasound images from earlier pregnancy as a memento
·
Scheduling doctor’s visits when other mothers expecting multiples
aren’t there
·
Deciding whether to view the deceased fetus on ultrasound during the
rest of pregnancy
·
More frequent exams, ultrasounds or testing for the mother's and
remaining baby(s)’ health
·
Naming the baby who died to help parents, survivors and siblings
discuss feelings
·
Photographing the deceased baby and all babies together after delivery
·
Choosing burial, cremation or hospital disposition
·
Deciding whether to view the baby at delivery, or later at the hospital
or funeral home
·
Developing a memorial service
In
another situation unique to multiple births, sometimes one baby is delivered
before it can survive, or when viability is questionable. Doctors may then
hospitalize the mother and use medication to try to prolong the pregnancy. This
can be successful for up to 3 months…but at other times does not work, and the
rest of the babies are delivered within a few days or weeks. Of reported cases,
roughly 40% of all the babies survive. Parents and doctors are guardedly
optimistic.
Sometimes
the firstborn lives in NICU for weeks or a couple of months while the mother is
hospitalized on another floor. She is already a mother, yet unable to act out
her role due to her continued high-risk pregnancy. This obviously causes
frustration. It is important for a mother whose firstborn multiple is living to
get pictures, see and touch her child as much as possible.
At
other times, the firstborn dies, or is taken off life support, before birth of
the other children. Doctors may hesitate
to allow a still-pregnant, high-risk mother to hold a dying child. Either the
grief of saying goodbye, or the mother’s anguish at not holding her child
alive, could trigger more contractions. Neither situation is easy. The mother
may be afraid to hope or to grieve, feeling she’s in limbo, “waiting to
exhale.”
Some
mothers describe feeling “not pregnant” after giving birth to the first
multiple, or missing “my twins.” Mothers sometimes worry that the firstborn
baby struggling for life misses those in the womb, or that the remaining babies
in the womb are lonely. Due to sadness at a first baby’s death, they may not
feel much interest in the ongoing struggle to save the remaining children. On
the other end of the spectrum are mothers who want no part of funeral
arrangements when there are babies still waiting to be born.
As with a fetal loss in ongoing pregnancy, this
situation raises many concerns and urgent choices at a time of high stress and
emotion. Parents can consider:
Parents
whose children are born very prematurely often do not know if the babies will
live, or their future quality of life. Parents alternate between hope and
despair, joy and sorrow, confidence and terror. With multiples, these feelings
are additive and often conflicting. One may be doing well on the same day his
or her sibling is at death’s door. Parents are dealing with the shock of
preterm delivery, learning the ropes of NICU, and trying to comprehend the
reality that they indeed birthed two or more unique babies at once. William
Woodwell’s book Coming to Term: A Father's Story of Birth, Loss, and Survival,
Not
surprisingly, the stress of NICU seems to be a bit worse for parents of
multiples than for parents of singletons. Attaching to multiples in NICU may
take longer than for singletons. It is important for parents to work with the
entire NICU team: doctors, nurses, social workers, clergy, ethicists, and
later, discharge planners, to make this stressful experience as understandable
and positive as possible. Many parents have suggested that team discussions
with many staff members (for instance, medical, social work and clergy) are
worthwhile for complicated scenarios, such as deciding to continue or
discontinue life support, contemplating surgery or an experimental treatment,
and before discharge of any survivors.
If
a baby is expected to die in NICU, most parents want to be present during
resuscitation efforts and want to hold the baby alive before he or she dies.
Photos before and after discontinuing life support, and if possible, photos
with the other multiples, are treasured.
Parents may want to bathe and dress the baby and have private time
either in the NICU itself or a family room near the unit. Parents can choose to
have clergy present during this time.
The
first return visit to NICU after one baby’s death is often the hardest. One
woman described taking a shower, putting on make-up and getting ready for her
“Academy Award-winning performance.” The last place a grieving parent wants to
be is right back in NICU. Some grief-stricken parents of preemie surviving
multiples expect the remaining child(ren) to die, too, and do not dare to hope
they will bring home a living baby. They may find it emotionally hard to visit
their survivors, and may delay planning for discharge until the last minute.
Other parents refuse to deal with grief until much later, living at the bedside
of their surviving babies and pouring all their love into them. Counseling may
help parents who find it hard to attach to the remaining child.
A
resurgence of grief is common on the survivor’s homecoming day, when parents
confront the fact that the babies who died will never come home. Rooming in for
one to two days before discharge, a formal discharge conference, and verifying
that all home health care equipment and home nursing and therapy are arranged
well in advance, enables a smoother transition home with survivors.
Grief
support and preemie parenting support are recommended after discharge so
parents don’t feel abandoned. It is normal for preemie parents to feel
unqualified to care for a child who was nurtured for months by a professional
team. It is even more common to feel this way when one or more of the baby’s
wombmates died soon after birth.
Ongoing
grief issues for some parents include second-guessing decisions to start,
continue or discontinue life support.
Later feelings of guilt may arise, regardless of the decision. Parents
have contacted medical professionals years later, asking for a frank answer to
whether they made the right choice. Reassurance from professionals involved in
these decisions might help. It is important to understand that people usually
make the best decisions they can with the best information available at the
time. Counseling may help parents become comfortable with their choices and
learn not to review them repeatedly.
Parents
pregnant with some normal and some abnormal fetuses in a multiple pregnancy
have heartbreaking options from which to choose. Sometimes the abnormal fetus
is certain to die within a short time after delivery. In other cases, the
abnormality might not be fatal, but the child’s quality of life would be
terrible. Parents make decisions out of love, choosing the better of bad
options while considering the quality of life their child would have, and the
impact of their decision on the healthy multiples. It is important for parents
to find support for their choice, since they may encounter criticism,
regardless of what they decide.
Decisions
concerning medical care of conjoined twins are complicated by medical and
ethical issues. Many conjoined twins are stillborn. Of liveborn sets, often one
is stronger and has the major share of common organs, while the weaker baby may
suffer from additional abnormalities that could be incompatible with life.
Undesired media attention hounds many affected families, and most prefer to
remain anonymous.
Some parents choose to terminate a pregnancy after
diagnosis of conjoined twins; others continue the pregnancy and hope for the
best. When parents opt for delivery, consultation with a center experienced at
managing conjoined twins offers the best chance for survival and good health of
at least one of the twins. Conjoined Twins International, available by phone at
520-445-2770 in
When surgery results in one conjoined twin’s death,
the adjustment of the survivor appears to be fairly good, according to articles
referenced by Raffensperger. Parents who lose one or both may have private
grief, not comfortable sharing their entire story in detail with others.
Affected parents may find loss support from CLIMB from other parents of
conjoined twins who died.
In
about 1% of monozygotic (identical) twin pregnancies, there is no dividing
membrane (amnion) between fetuses, and two fetuses share the same sac. The
risks of cord entanglement and/or twin-to-twin transfusion syndrome are quite
high, with up to 50% death rates of affected twins according to some studies.
Others have quoted more optimistic figures with very careful management.
Consultation with a high-risk perinatal specialist is mandatory. The
Monoamniotic group, www.monoamniotic.org,
is an online support network of parents who have been diagnosed with this type
of pregnancy. Parents who have lost twins to this condition, as well as those
with survivors, are members.
TTTS
affects about 15% of monochorionic pregnancies (pregnancies in which twins
share the same placenta). Dizygotic (two-placenta) twins do not experience this
condition.
TTTS exists in a number of forms: acute or chronic,
mild to severe. The prognosis is worse the earlier in pregnancy it is
diagnosed, and the greater the difference in size between fetuses. There are
several ways of managing this condition, including serial amniocentesis
(periodically removing fluid through a needle inserted into the mother’s
abdomen from the sac around the recipient twin) and laser coagulation of blood
vessels in the placenta. Either way, significant risk of loss can cause parents
worry. Parents sometimes second-guess their choices later, wondering if they
should have opted for a different form of treatment.
The TTTS Foundation, www.tttsfoundation.org, offers TTTS
information, discussion forums for loss of one or both twins to TTTS, and
excellent pamphlets on loss of one or both twins from any cause. Other specific
resources include:
·
Twin Hope, www.twinhope.com
Founded by a mother who lost both twins to TTTS.
·
Twin2Twin in the
·
The Florida Institute for Fetal Diagnosis and
Therapy, www.fetalmd.com. Support,
including bereavement support, is available for patients of this institute.
·
http://www.twinttts.8k.com/main.htm
a nonprofit site with information and support.
·
http://www.twin-twin.org/,
an Australian support network for loss from TTTS.
All
statements in this article about the complexity of grief when multiples die are
even more true when three, four or more fetuses were present at the beginning
of pregnancy. It is important to understand that even when all babies are born
healthy, parents of high-order multiples experience greater financial,
physical, marital and emotional stress than parents of singletons or triplets,
with higher rates of depression and possibly a higher risk of divorce.
Disability rates are significantly higher in sets of triplets, quadruplets and
more. Loss rates are also
correspondingly higher, and quadruplet and higher pregnancies are particularly
at high risk of fetal loss, premature delivery, and/or health problems for the
mother.
Parents
are first faced with the need to promptly decide if multifetal reduction is an
acceptable option. There are many potential complicated scenarios, such as a
set of identical twins, one anomalous fetus, and a healthy fetus all together
in a set of quadruplets. If no losses occur during pregnancy, parents of very
low birthweight babies may face the nightmare of two or more deaths in their
set of multiples…possibly taking none home in the end. A boy may need emergency
surgery during his triplet sister’s funeral. Survivors may have serious,
lifelong medical problems.
With
so many considerations, parents will react to each new crisis differently. It
is hard to stay afloat in a constantly changing sea of bad news, grief, and
hope. Parents may never feel they can completely grieve. Those with two
survivors may not be recognized as parents of triplets or more. They commonly
hear from both family and strangers about how cute their “twins” are, and need
to decide how aggressively to correct this natural misunderstanding. Parents
may not fully process what they've endured until years later…and should seek whatever
support they need, even if it's five years down the road. They will likely not
find total understanding from any one source, but high-order-multiple
organizations, preemie organizations, CLIMB, bereavement and special needs
parenting resources can supplement their own sources of support.
No
decision in a high-order-multiple pregnancy is easy, and parents may
understandably review their choices for years afterward, wondering if they
should have chosen differently. Parents who opt for multifetal pregnancy
reduction may wonder what the reduced babies would have looked like. Parents
who did not reduce might look at survivors, especially those who are very
disabled, and wonder if they made the right choices for their children.
8. Loss from suspected medical error
Parents
in this circumstance are in a touchy situation. They need information from the
same caregivers they suspect caused their loss. Survivors may even be under
care of the same team. Communication is vital, about both medical and emotional
issues. Not all parents will choose to
bring legal action. Poor communication and suspicion of cover-up are often at
the heart of lawsuits. I know of parents who requested transfer of a seriously
ill preemie to another institution because of lack of trust, and this may be an
option, although not to be considered lightly. One study documented that civil
litigation caused increased stress in people who were in psychotherapy for
another reason. Independent counseling may help parents decide for or against
litigation, and help them cope through the process. An emotional but insightful
book, Barry Werth’s Damages, follows a family, obstetrician and lawyers
for both sides as a suit is brought on behalf of a severely disabled surviving
twin following his birth with his stillborn twin. It might be difficult for
some parents to read soon after birth.
Whatever your personal loss circumstances happen to
be, please accept my deepest condolences on your very sad loss. I hope this
article gives you a few resources with which to begin your own unique journey
through grief…a healing process that brings new insights as well as pain.