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MANAGEMENT PROTOCOL FOR
PERINATAL MULTIPLE BIRTH LOSS
ELIZABETH A. PECTOR, M.D.
APRIL,2000
INTRODUCTION
Prenatal and early neonatal death occur more often in multifetal pregnancies
than in singleton pregnancies. This protocol addresses unique aspects of loss
in multiple birth to help professionals meet the physical and emotional needs
of families confronted with such a loss. The grief process is as individual as
the people who experience it, so statements made herein may not represent the
reactions that a given patient will have. This compilation is an attempt to
organize what has been learned from the experiences of many parents.
Bereaved parents of multiples face hidden losses in addition to the obvious
loss of their children. Many parents keenly miss the celebrity and challenge
they would have had in raising the original number of multiples. They can't
watch their children's unique relationships flourish over a lifetime together.
Parents with a total loss after infertility treatment may forfeit their last
chance at parenthood. Parents may grieve for the normal pregnancy or delivery
they didn't have. Parents whose survivors have special needs lose the chance to
raise a "normal" child.
Grief after loss of all multiples averages six months more than singleton loss,
and may be more intense. With survivors, grief may also be prolonged, and full
resolution may not occur until 3-5 years or more after delivery. Mourning may
be delayed or complicated in the event of multiple simultaneous crises, such as
unstable health or surgery in the mother or survivors. Some parents with
survivors may develop confusion between their dead and living babies, or have
flashbacks to the deceased child while caring for survivors.
OVERVIEW OF CAREGIVER RESPONSE
Care of bereaved parents of multiples requires tact and tenderness as well as
technology. It is helpful to not overemphasize the rarity of a situation when
talking with parents, so as not to magnify the parents' sense of isolation or
failure. Criticism of difficult decisions such as selective termination,
continuing a difficult pregnancy, or withdrawing life support, should be
avoided.
The manner in which situations are presented to parents influences how they
later explain the death to any survivors and to family and friends. Derogatory
terms should be avoided when discussing the babies (e.g. vanishing, weak,
deformed, acardiac monster, or one twin “stealing” circulation or “strangling”
the other.) Neutral terms, such as abnormal cord attachment, twin reversed
arterial perfusion, twin-to-twin transfusion syndrome (TTTS), anomaly, cord
accident, etc. are preferable. If no cause for death can be determined, many
parents prefer to tell people that twin pregnancies are higher risk just
because two babies are present instead of one, so there is a greater chance of
something going wrong.
Parents often want multiple pregnancies continuing after prenatal loss to be
referred to as consisting of the original number of fetuses, not the number of
survivors (e.g., two surviving triplets are not twins). After selective
reduction or termination, or early miscarriage in a multiple pregnancy, parents
should be specifically asked how they want to refer to the gestation. If all
children from the pregnancy perish, caregivers should avoid minimizing the
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MANAGEMENT PROTOCOL FOR
PERINATAL MULTIPLE BIRTH LOSS
ELIZABETH A. PECTOR, M.D.
APRIL,2000
deaths by referring to the multiples as "the triplets" or "the babies," as
though they were a single child. The children's unique identities need to be
established, with appropriate memories created.
Although some parents may have difficulty beginning the grief process due to
more pressing concerns, crucial decisions must be made. Some parents delegate
these decisions to close friends or family members. Staff should fully inform
parents, or their designated proxies, of the options for viewing and creating
memories of their deceased children. The parents or decision makers need
truthful but sensitive explanations of what happens to the child's body if the
hospital arranges for its disposition. Parents who seem reluctant or unable to
make decisions regarding their deceased children can be encouraged, but not
coerced, to see them and to participate in arrangements. Their choices should
later be reaffirmed as the best decisions they could make under very trying
circumstances. Photos and other mementos should be saved in a safe place by
the hospital, since parents who cannot cope at the time a death occurs often
seek out reminders months or years later.
Maternal needs may be very complicated in the event of a multiple birth loss.
In the course of conceiving, carrying and delivering more than one baby,
mothers may have had a medically traumatic pregnancy and delivery, with many
procedures, complications, prolonged bed rest or hospitalization. They may need
repeated opportunities over several days, not just in the delivery room or for
a few hours, to spend time with deceased children, and with dead and living
babies together. Families should not be hurried through these experiences.
The mother's partner should be actively included in discussions, beginning at
the time that loss is discovered or anticipated. Partners can be easily
overlooked, but they have many important roles in the event of loss and deserve
adequate recognition, information and support. The needs of any older children
within the family unit should also be adequately addressed.
Surviving multiples don't eliminate or decrease the need to grieve. Many
parents have been advised to ignore or suppress grief "for the sake of the
survivors." Grief denied is grief delayed, and healthier parenting of survivors
will be possible if adequate mourning for the lost children is encouraged from
the outset. Encourage parents to discuss both the dead and the living children.
Keep up-to-date resource information on hand for local infant loss support
groups, multiple birth loss support groups (with phone numbers, meeting
locations and times if possible), perinatal bereavement counselors, CLIMB, and
books or pamphlets dealing with infant loss in general, and multiple loss in
particular. Resources accompanying this protocol can be used as a start.
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MANAGEMENT PROTOCOL FOR
PERINATAL MULTIPLE BIRTH LOSS
ELIZABETH A. PECTOR, M.D.
APRIL,2000
Where physicians are specified in this protocol, the same principles would
apply to other providers, e.g. nurse midwives, nurse practitioners, or
physician assistants. This protocol is not intended to prescribe details of
medical care, but rather to indicate how the grief process can be sensitively
addressed by caregivers during clinical encounters with bereaved patients.
I.
Delivering bad news during pregnancy
A. The professional (e.g. nurse, radiologist, perinatologist) who
discovers an intrauterine demise should discuss the situation
with the patient’s primary obstetric provider. Decide who will
inform the patient. If an anomaly or high-risk condition is
discovered, brief and sensitive discussion of the problem
should occur initially. An appointment should be scheduled
with the primary obstetric provider or an appropriate
specialist (geneticist, perinatologist, etc.) to thoroughly
discuss the condition, its medical and practical implications,
and available management options as soon as possible after
diagnosis.
B. The spouse or another support person should ideally be present
when bad news is delivered. The presence of a nurse during the
discussion can be helpful, so that questions can be
knowledgeably answered after the informant departs. A woman
should not be left alone immediately after receiving bad news.
However, she can be offered some privacy and telephone access
to discuss the news with her partner if he could not be present
for the initial notification.
C. Parents should be informed in person. A show of tears or a
physical touch (hand-hold, hug, or a hand placed on the
shoulder) by the professional may be reassuring.
D. Use clear, direct language and express your sorrow. “I’m so
sorry to have to tell you this, but Twin A has died.” Some
parents don't understand clinical terms such as "vanishing
twin," "demise" or "absent cardiac activity." Be sure they
comprehend what was said before leaving the room. Avoid wellmeaning but hurtful comments (see IX). Don’t hide a definite
demise in uncertain terminology (“We’re having trouble seeing
twin A on ultrasound,” “There’s a problem with one baby so you
need further tests,” etc.) Refer to the demised fetus as a
baby, multiple (e.g. twin or triplet), son or daughter, not
“the female (male),” “the fetal demise,” or "your product of
conception."
II.
Fetal loss before viability
A.
Miscarriage (first trimester)
1.
The earlier a fetal loss occurs in pregnancy, the better the
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MANAGEMENT PROTOCOL FOR
PERINATAL MULTIPLE BIRTH LOSS
ELIZABETH A. PECTOR, M.D.
APRIL,2000
prognosis for any remaining fetus(es). Emotionally, it is best
to discuss the pregnancy as a twin (or higher order) pregnancy
with an early loss, and to encourage the parents to grieve the
loss of one (or more) of their babies. More complete grief
resolution during a continuing pregnancy may be possible with
earlier compared to later losses.
B.
2.
Parents who suffer a complete pregnancy loss after infertility
treatment may be at increased risk of depression or low selfesteem.
3.
Grief during pregnancy is difficult, and some parents may defer
grieving a partial loss until after delivery. The patient can
still be asked during office visits how she is coping with the
loss. Ask parents how they want to refer to the pregnancy: as
the original number of fetuses, or as the number remaining.
Caregivers should acknowledge the parents' view of the loss's
significance, without either pressure to forget demised fetuses,
or prolonged dwelling on the topic of loss.
4.
Death of a remaining fetus later in pregnancy may reawaken
earlier grief and guilt.
5.
Ultrasound pictures and video from early pregnancy may
become treasured mementos, possibly the only evidence of the
entire set of multiples. Images printed on thermal paper will
deteriorate with time and exposure to heat and light. To
preserve them, photographic negatives of ultrasound images can
be made inexpensively, then converted to permanent prints.
Alternatively, color copies of ultrasound images made on a color
copier can produce an easier-to-handle photograph, although
there may be risk of the original image deteriorating faster due
to light and heat exposure from the copier.
Multifetal pregnancy reduction (MFPR)
1.
Most parents eventually have a positive psychological outcome
after MFPR compared to the stress of parenting high-order
multiples. Infertility, and the struggle to conceive, are more
stressful for most parents than undergoing MFPR.
2.
The procedure itself is stressful, with most parents
experiencing sadness, anxiety, guilt and/or distress on the day
of the procedure. Grief may last an average of a month
afterward, although some parents don't grieve at all and others
do so for years. Fear for loss of the entire pregnancy is the
greatest stress thereafter. Risk of depression is not increased
after successful MFPR, except in patients who already have
living children.
3.
More intense grief might be seen in younger parents, those who
have seen the fetuses more frequently on ultrasound, more
religious patients (although studies vary on this point), and
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MANAGEMENT PROTOCOL FOR
PERINATAL MULTIPLE BIRTH LOSS
ELIZABETH A. PECTOR, M.D.
APRIL,2000
those who have a total pregnancy loss after MFPR. Special
attention should be paid to these parents' psychological state
at followup obstetric visits.
4.
C.
Parents should be told they may expect to have occasional
thoughts about the sex or appearance of reduced fetuses, or
thoughts about what it would be like to raise the original
number of multiples. Parents often feel relief to only have two
children to raise. Some parents have anniversary reactions the
first year after the reduction. By two years most parents have
adapted to the results of their decision and the vast majority
would make the same choice again.
Second and third trimester loss before viability, and “going longer”
with survivors
1.
What is it like to go longer after intrauterine demise, carrying
life and death together? Some mothers have expressed feeling
isolated, as though they are "freaks" or "walking coffins." Some
may feel unrelenting raw, intense emotions for weeks, with no
closure until after delivery. Others feel they're riding an
emotional roller-coaster, up one day and down the next. Still
others can relax and enjoy the pregnancy somewhat. Sorrow for
the dead child, anxiety about its appearance at birth, and
worries for the survivors' health will usually be major concerns
until delivery. Some parents consciously delay grieving and
dedicate themselves to concern for the survivors' wellbeing.
Certain sensations are indescribable: feeling a living child's
activity move its dead sibling's body in utero, or holding a
dead child at delivery while the survivor is still inside
waiting to be born. Parents who feel up to it appreciate the
chance to plan delivery and memorials in advance. However, some
parents, fearing the possibility of additional loss, find it
difficult to bond to their survivors during the rest of the
pregnancy, or plan for their birth or homecoming. Some mothers
find meaning and comfort in cherishing the rest of the pregnancy
as the only time they will have to mother their deceased child
and to have all multiples together. Anxiety and grief may
intensify at delivery for some parents, with feelings of both
relief and regret. Attention to factors outlined below may help
families achieve a sense of closure after delivery.
2.
If pregnancy is continued, parents may need repeated
explanations of the benefits of delayed delivery for the
survivor. Parents or those close to them may wonder why you
don’t just “get the other baby out.”
a. Carefully assess the placenta to determine if it is
monochorionic, since monochorionic multiples are at higher
risk of subsequent mortality or compromise after intrauterine
demise of one fetus.
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MANAGEMENT PROTOCOL FOR
PERINATAL MULTIPLE BIRTH LOSS
ELIZABETH A. PECTOR, M.D.
APRIL,2000
b. Parents will be especially concerned about the health of
remaining fetus(es) in the pregnancy. Frequent prenatal
visits may be reassuring.
c. Parents should be instructed on actions they can take to
help monitor maternal and fetal health. This can help them
regain a sense of control of the pregnancy.
d. Prepare the parents for the likely size and appearance (e.g.
state of decomposition) of the deceased twin at the time of
delivery of the survivor. Recognizable remains are probable
with loss after about 16 weeks. Be specific with your
remarks, and don’t dismiss concerns with comments at either
extreme, such as “There won't be anything left," "Your body
will reabsorb it” or “It will look like a baby, of course!”
The baby won’t look “normal,” but parents should be strongly
encouraged to plan to see their child, with reassurance that
a physician or nurse will describe the baby to the parents
prior to their viewing it. One mother’s very understanding
physician allowed her to hold a model of 20 week twins during
a prenatal checkup, so she could visualize the size of her
baby who had died. Useful information to guide professionals
and parents is available in the following references: (1)
Pauli R, Maceration and the timing of intrauterine death,
WiSSPers 1995 Jan;2(1):2-5. (2) Wigglesworth JS: Perinatal
Pathology. Philadelphia: WB Saunders Co., 1984 pp 84-92. (3)
Our Newsletter, Spring 1996, Center for Loss in Multiple
Birth.
e. Parents should be asked if they would want an autopsy done.
Explain the process, and what information might be learned.
f. During maternal-fetal evaluations and testing before
delivery, show compassion and treat the mother as a
person who’s lost a child, not just an “interesting case.”
g. Mark the mother's chart prominently at the office and
hospital to alert staff that one or more children from the
pregnancy have died. One mother faced a different technician
for each post-loss ultrasound and had to respond each time to
the tech's query "Oh, you're having twins?" A simple
brightly-colored sticker can prevent such awkward encounters.
3.
Emotionally, the parents must begin the difficult process of
grieving the loss of a child while still carrying one or more.
Refer to hospital perinatal bereavement counselors. In addition:
a. Refer parents to CLIMB for their excellent spring, 1996
newsletter on “going longer” after intrauterine demise of one
or more fetuses. Parents may feel isolated & socially
uncomfortable. Other parents who have experienced the same
type of loss can offer valuable support. If you personally
know of other women who have experienced this situation,
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MANAGEMENT PROTOCOL FOR
PERINATAL MULTIPLE BIRTH LOSS
ELIZABETH A. PECTOR, M.D.
APRIL,2000
contact them and ask if they’d be willing to talk to your
current patient. A local support group for parents currently
pregnant after a previous pregnancy loss may also be helpful.
b. Encourage the parents to develop a birth plan. A sample is
available in the appendix to Elizabeth Noble's book, Having
Twins. Points to include are: choice of delivery mode (NSVD
vs.C/S), anesthesia and analgesia, person(s) to be present at
the delivery, naming the children, deciding if and when to
view the deceased children (at delivery vs. later), order in
which to view the children, selecting music to play during
delivery, photography in the delivery room, clergy attendance
at or after delivery, and specifying what they want done for
themselves and their deceased child during their hospital
stay. Parents who feel emotionally too distraught to do this
should be reassured that staff will help them through the
process step by step when the time comes.
c. Parents or their designated proxy should specify to the
hospital what they want done with their child's remains,
especially with demise occurring before 20 weeks, so the
hospital doesn't accidentally dispose of the body in a
mistaken attempt to be “helpful” and spare the parents the
pain or expense of arranging burial. If parents ask the
hospital to take care of their child's remains, they should
be told in a sensitive manner how they will be disposed (e.g.
incinerated with other surgical specimens, or buried in a
common grave). Parents have been distressed to discover this
information later when they seek their child's burial site or
request ashes. Make their choices known in their office and
hospital medical records.
d. The loss must be addressed not only at the time of
diagnosis, but throughout the duration of the pregnancy.
Ask how the parents are coping, and continue to refer to
the pregnancy by the original number of fetuses. (e.g. death
of a triplet does not create a twin pregnancy.) Offer to
show the parents the baby(s) who died, when conducting
ultrasound exams on survivor(s) at later office visits.
They may not initially want this, but appreciate the offer
and may take advantage of the opportunity later.
e. Help parents remember something about the lost fetus that
was unique: sex, activity on ultrasounds, maternal
sensations of movement, nicknames, location in the uterus,
etc. This will help them think of the child as an
individual, important in later grieving and family memories.
4.
Address common parental fears during prenatal visits, including
the possibility of premature labor, and pre-viable delivery or
intrauterine death of the remaining fetuses.
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MANAGEMENT PROTOCOL FOR
PERINATAL MULTIPLE BIRTH LOSS
ELIZABETH A. PECTOR, M.D.
APRIL,2000
5.
D.
E.
Due to the opportunity to plan ahead after working through the
initial shock and denial, parents should be encouraged to plan
birth/death announcements, funeral or memorial services, burial
or cremation arrangements, and any other post-hospital needs,
during the remainder of the pregnancy.
Delayed interval delivery
1.
Most issues will be similar to those in demise occurring before
viability. However, while trying to delay delivery of the
remaining child(ren), still-pregnant mothers may be coping with
worry about their firstborn extremely premature infant(s) whose
ultimate fate is unknown, or mourning the death of the firstborn
child while hoping that the co-multiples won't suffer the same
fate. Some parents may defer grief and final arrangements for a
deceased firstborn multiple's body. Opportunities to discuss
anxiety and grief can be offered by obstetricians for the
duration of the pregnancy, with respect shown to those parents
who indicate they do not want to discuss the loss.
2.
Due to the mother's medical condition, she may not have the
opportunity to view or hold a child who dies, or participate in
a memorial service. Parents may need to verbalize their guilt or
grief about lost opportunities. Discussions with the morgue or
funeral home about options for delaying burial or memorials may
reassure some parents, enabling more complete participation of
the mother and perhaps allowing both parents an opportunity to
see their deceased and living children together after delivery
of the remaining children, or to bury or cremate all together in
the event that the entire pregnancy is lost.
3.
Some parents who have delayed interval delivery won't have an
opportunity to experience their multiples together as a set.
Some parents wonder if the survivor still in utero "misses" its
wombmate(s). It may be possible for a mother to hold the dying
or deceased child to her abdomen for it to "say goodbye" to the
other baby still in utero. This symbolic respect for the twins'
unique relationship may be appreciated by mothers who may never
be able to hold their twins together outside the womb.
4.
Encourage parents to make use of support resources (CLIMB,
Sidelines, other relevant organizations) and planning as
detailed in II.C. above.
Lethal anomaly or conjoined twins, with expected intrauterine or
early neonatal demise
1.
Many issues are similar to those with second or early third
trimester demise, especially the opportunity to create
birth plans, choose names, and plan for a funeral or
memorial.
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MANAGEMENT PROTOCOL FOR
PERINATAL MULTIPLE BIRTH LOSS
ELIZABETH A. PECTOR, M.D.
APRIL,2000
2.
The parents may cling to hope that the baby(s) will survive, or
was/were misdiagnosed. Without being unrealistically
optimistic, parents can be informed that the child may in fact
live longer than expected. Options to bring a child home to care
for, with appropriate medical assistance and comfort care until
death, can be offered to the parents. Refer the parents for
prenatal consultation with neonatologists, and see VI.A.3 below.
3.
Refer parents to CLIMB, and appropriate support organizations
for the specific circumstances (e.g. lethal fetal anomaly or
disease, conjoined twins).
4.
The option of selective termination of the anomalous fetus
should be discussed. Providers must realize the parents may
still have bonded to this child, despite the existence of a
lethal defect. Be sure they have adequate psychological support
before and after termination, and for the duration of the
pregnancy, if this option is elected. Grief may be as intense
for wanted fetuses terminated for anomaly as it is in parents
who suffer a spontaneous pregnancy loss, and parents should be
so informed and referred to appropriate sources of support (see
Resources accompanying protocol). Parents who know in advance
that they are at risk of having a child with a genetic disorder
may cope somewhat better with diagnosis of a fetal abnormality
than those who learn of a totally unexpected problem after
routine prenatal screening.
5.
Be very careful with language used to refer to the abnormal
fetus. The parents in many cases will still develop loving
attachment to the baby. If the malformed baby survives birth,
the parents should be encouraged to spend as much time as
possible with that baby in addition to the healthy one(s).
6.
Parents usually fear how an anomaly will appear at the time of
delivery. Offer to show them photos of similar babies. Reassure
them that most anomalies can be draped with towels at delivery
in such a way that only the most normal features are exposed.
Parents can be informed that professional literature states that
viewing an anomalous child is beneficial for the grief process,
and that parents generally imagine anomalies to be worse than
reality. Apprehensive parents could plan to view a Polaroid
photo of their child at delivery before deciding whether to see
the baby in person.
7.
Conjoined twins should definitely be considered two babies.
Professional reassurance to the parents that they do have twins
(two individual children) can help them properly consider the
ethical dilemmas involved in potential therapies or prepare to
confront possible loss scenarios. Parents may appreciate
consultation with specialists experienced in managing conjoined
twins. Loss issues should be addressed, and support provided, if
treatment has a high likelihood of resulting in death of one or
both twins.
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MANAGEMENT PROTOCOL FOR
PERINATAL MULTIPLE BIRTH LOSS
ELIZABETH A. PECTOR, M.D.
APRIL,2000
III. Intrauterine loss at the limits of viability: In hospital
IV.
A.
Explain the recommended medical procedures, consultations,
hospitalization, prolonging the pregnancy vs. urgent delivery,
monitoring/testing, labor induction, emergency cesarean, etc.
The parents will likely be in shock emotionally, and unable to
comprehend much of the information presented. Keep it simple,
and limit the initial information to concerns such as imminent
delivery, need for transport to a tertiary center, chances of
survival and quality of life if remaining multiples are
delivered immediately, and danger to mother and survivors with
immediate delivery and with deferred delivery. Nursing staff
can be very helpful in remembering and repeating information
to parents, and a written summary of information discussed
will enhance retention.
B.
Consultants should introduce themselves, acknowledge the loss
and the parents’ shock and grief, then briefly explain their
role in the process. Leave a business card with a number where
the parents can contact you. Be honest about the quality of
life the survivor(s) would likely encounter; hard decisions may
need to be made regarding whether or not to prolong the pregnancy,
or whether to initiate resuscitation efforts.
C.
Do’s: Ensure that staff members responsible for bereavement support
visit the parents. Refer to the deceased fetus as a baby girl, boy,
or multiple, not “the female,” or “the demise.” Translate medical
terms into language the parents can understand. Address the father
or support person directly, and make eye contact. Be available for
questions. Defer appropriate questions or decisions to more qualified
consultants. Spend extra time on hospital rounds to ask how the
mother’s coping with the situation.
D.
Don’t’s: Don’t assume someone else told the parents what happened so
that you don’t need to discuss it. Don’t ignore the dead fetus in
all subsequent discussions as though it had never existed. Don’t
assume the existence of surviving multiples lessens the grief for the
lost one. Don’t leave delivery of deceased fetuses to nurses, if all
multiples died.
At delivery after intrauterine fetal demise, or for extreme prematurity
A.
Before delivery, nursing staff should ask if there is anyone the
parents want to be present (grandparents, older siblings, etc.) and
if the parents want clergy present for a blessing, baptism, etc. If
social service or pastoral care support is available to help counsel
older siblings, offer such aid.
B.
Review the parents’ birth plan if they developed one after
learning of a demise. Announce the birth of each child/fetus, using
names if known. If possible, make a positive comment about a
deceased fetus such as presence of hair, resemblance to survivor,
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MANAGEMENT PROTOCOL FOR
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ELIZABETH A. PECTOR, M.D.
APRIL,2000
“perfect features” or “well-formed.” Allow the parents to see a
stillborn child right after delivery if requested, after preparing
them by describing what they’ll see.
C.
Treat the deceased fetus’s body with respect, even if the
demise occurred weeks earlier. Don’t just lay the body
roughly on a table or in a specimen basin. Encourage the
parents to view, photograph, and hold the deceased child. If
possible, allow the father/support person to hold the deceased
child in the delivery room. If a cause of death is immediately
apparent at delivery, inform the parents. Knowing that there
was a logical cause for loss often prevents anguishing grief
and questions later.
D.
If parents have decided against resuscitative measures in previable or borderline-viable multiple deliveries, allow them to
hold the infants together as well as separately, and have staff
take 35 mm photos (preferable to Polaroids) of parents holding
the babies. If neonatal death is imminent in the delivery room
(e.g. C-section room), allow the parents time to be with the
babies and avoid rushing the mom to recovery if she’s medically
stable. They should be allowed to spend as much time with
their deceased babies after delivery and during the rest of the
hospitalization. Don’t take the dead child’s body back until
the parents are ready to give him or her up.
E.
Support the mother’s breastfeeding attempts with survivors.
1.
Giving up on breastfeeding too early because of prematurity,
infant feeding difficulties, medical complications or
difficulty initiating lactation introduces yet another
loss to the mother. Involve the lactation consultant.
2.
Breastfeeding has been, for some mothers, a way of coping
and working through grief. It may also, however, create
acute sadness when a mother who had planned to nurse all
her babies is confronted again with the reality that one
is missing. Grief counselors, nurses and lactation consultants
should help the mother work through this.
3.
Be aware it may take longer for grieving multiple-birth mothers
to establish a good supply due to a number of medical and
emotional factors. Encourage continued efforts at nursing or
pumping, involving outside consultants (e.g. La Leche) if
necessary. Be careful not to make a mother feel guilty if,
after significant effort, it just doesn’t work out.
4.
Colostrum or breast milk can be used to moisten a critical or
dying NICU baby's mouth and lips during mouth care. This
consoled at least one mother who knew her baby tasted her milk
although she was never able to breastfeed her daughter before
death.
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MANAGEMENT PROTOCOL FOR
PERINATAL MULTIPLE BIRTH LOSS
ELIZABETH A. PECTOR, M.D.
APRIL,2000
5.
Some grieving mothers have expressed a desire to donate excess
milk to a human milk bank, or to feed other hospitalized infants
at the institution where their child died. This option, if
technically feasible, may represent an opportunity to do
something positive in memory of a deceased child.
F.
Be sure the mother gets the time she needs to be with her deceased
child(ren), and be sure her older children or any other visitors can
see the body whenever desired in the hours and days after delivery.
It may be possible for the morgue, or a funeral home, to keep the
body for weeks or even a month or two if the mother's physical or
emotional condition prohibits her from seeing her dead child's body
until that length of time has passed. Don’t rush the parents through
decisions about disposition of the body, or planning memorial
services or obituaries.
G.
Careful placental analysis and zygosity testing should be performed.
Autopsy should be encouraged, especially when cause of death is
unknown or multiples were monozygous. Blood or tissue samples must be
obtained promptly after delivery for chromosome analysis or zygosity
testing. This can prevent the need for costly DNA analysis later.
With refrigeration of the body after obtaining these samples, autopsy
can then be postponed for several days if necessary. The child's body
can be refrigerated for 24 hours or possibly a few more days, with
little alteration of postmortem findings, if the parents are
undecided about autopsy or if the mother's health after delivery is
unstable and she has not been able to see her child. The body should
be re-warmed shortly before parental interaction with it. (courtesy
R. Pauli, personal communication)
H.
Zygosity will be important both medically and psychologically for the
parents and surviving multiples. Zygosity is also important when all
babies died, to determine risks of multiples or complications in
subsequent pregnancies, and to help the parents visualize their lost
children. Monozygous multiples are found even in fertility patients
or those with 3 or more spontaneous fetuses, so this possibility
should always be considered.
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V.
NICU care of terminal babies or surviving multiples
The NICU experience can be extremely stressful and isolating for parents.
This is especially true for grieving parents, who may feel different from
successful parents. They may feel a need to avoid discussing their
experience in other NICU parents' presence, or such parents may in turn
avoid them, not wishing to hear about babies that died.
Attention to the following points may decrease some of the stress for
neonates, parents, and professionals. Parents should be well-informed
and involved in decision-making and daily care tasks. Success is
facilitated by clearly written care plans; consistency, communication and
cooperation between professionals; and attention to psychosocial needs of
all family members. Early orientation of parents to the rules and
routines of NICU may reduce stress, so they know what they should expect
of professionals and what is expected of them. Referral to information
and resources relevant to their children's conditions (books or
pamphlets, Internet web sites, organizations and/or support groups)
should be given early in the child's stay. Staff should encourage
contact with other current and past parents of NICU infants for support.
Parents should be forgiven for seemingly irrational outbursts or
moodiness. Multiple pregnancy, the death of a child, and the NICU setting
are each significant stressors in their own right, so the three combined
can easily overwhelm even the strongest of people.
Many loss scenarios can occur in NICU, including: 1) An intact set of
extremely premature liveborn multiples, some or all of whom die during a
NICU stay of variable duration. 2) A baby critically ill who endures a
prolonged stay, often with many procedures, but ultimately dies. Healthy
co-multiples may be home with parents, and/or others with serious
problems may still be hospitalized. 3) Prolonged hospitalization of
survivor(s) after the fetal or neonatal death of one or more multiple
sibling(s).
A.
Emotional and family considerations
Parents commonly feel deep guilt, fear, anger, and a sense of
failure. If delivery was premature, the mother may feel her body
failed her babies, or that she neglected warning signs of impending
delivery. If there was a traumatic birth, with severe asphyxia or
other injury, parents may harbor anger toward the delivering
physician(s), or blame themselves for not seeking more expert care
for their pregnancy. The silence is deafening for parents who have
no babies home yet, after months of preparing for the chaos created
by two or more infants. If one or more multiples has died and a
survivor is in NICU for months, parents may feel there's no hope of
ever bringing home a living child, and thus may delay preparing for
homecoming until what seems like the last minute. They may focus
their thoughts on grief for already-deceased infants or grief for the
normal pregnancy and birth they didn’t have. Other parents may defer
dealing with grief issues due to overwhelming concerns about the
surviving child(ren), and may feel a need to compartmentalize their
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ELIZABETH A. PECTOR, M.D.
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grief and may not wish to discuss the deaths of one multiple while
visiting survivors at the hospital.
1.
Social service personnel can become involved early in the NICU
stay, assessing needs for counseling and help at home. They
should reassess parental needs and coping abilities regularly
during a prolonged stay. This can include questions about
feelings of guilt, fear, anger, depression, inadequacy as
parents, difficulty bonding with survivors, and inability to
cope. Parents are usually in shock initially and may refuse
counseling, not realizing what a severe loss they have
experienced. Mental health intervention can be repeatedly
offered, in addition to support group referrals. Mothers and
fathers may differ in the intensity of their grief or their
difficulty in bonding to survivors. They should be reassured
such differences are normal, but can create relationship stress.
Parents may be receiving little support from family members
after the initial crisis stage has passed. Please refer to VIII.
J and P for suggestions on assisting parents with decisions
regarding disposition of a deceased child's body and/or memorial
services. They should not be rushed through these decisions
when so much is happening at once.
2.
Nurses should attempt to involve the parents as much as possible
in comfort care for their babies: bathing, dressing, changing,
holding. Parents have expressed feeling like visitors, not like
parents, when visiting NICU. Attempt to have a limited number
of nurses assigned to the child(ren) or family, with appropriate
attention to the professionals’ needs to get a break from
an emotionally difficult situation. The parents need to have
a few primary nurses who will help them understand the
frightening technical environment of NICU, people they can
confide in and trust. Relationships established in the early
days are crucial. Understand that parents who have already
experienced the death of one of their babies will be even more
fearful of handling a baby whose size or medical condition are
fragile.
3.
Some parents are afraid to bond with a terminally ill neonate
or surviving multiple. They may refuse to hold the baby,
thinking, “If he/she dies (too), it won’t hurt so much if I
don’t let myself get attached.” If either parent seems
unusually detached from their child, ask if they’re afraid to
get close, and encourage them to try to get acquainted with
their baby. It helps to tell them that other parents in similar
situations have felt like they do, but later regretted not
taking advantage of every possible opportunity to get to know a
baby whose life was very short.
4.
Other parents feel the survivor(s) are a major factor in
"getting them through" their grief. They may become quite
attached and spend long hours in NICU. They should not be
criticized for hovering and hypervigilance. It is normal for
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them to want deep involvement with, and detailed information
about, their children's care.
B.
5.
Parents should also not be criticized for visiting too little.
If older siblings or healthy multiples are at home, or if there
are pressing responsibilities at work or for other
ill family members, parents may not be able to visit as often as
desired. The time they can spend with any one child may be
limited. Don’t be judgmental of them for not visiting. They’re
undoubtedly doing all they can manage for their hospitalized
child(ren). Call the parents with updates on their
child(ren) if they are unable to visit daily.
6.
Since deterioration can occur without warning, ask the parents
early in the hospitalization about their preferences for
clergy visits, baptism or anointing, prayer services or
a naming service for all the babies together. Create ways
to allow parents and extended family to celebrate the life
of their critically ill children and enjoy all their babies
together at least once.
7.
Maximize resources to enable the parents to spend time
with their children. Arrange for a bassinet, crib or cradle
in a room near the nursery so that healthy multiple siblings
who had already been discharged can be present at the hospital
while the parents spend time with a critically ill or terminal
baby. Contact mothers of twins clubs, hospital volunteers,
Triplet Connection, or Mothers of Super Twins groups in the
area to see if other multiple mothers would be available
to support the parents emotionally, provide rides to the
hospital, watch visiting older siblings or co-multiples, etc.
Investigate the availability of reasonable-cost child-care
providers who could care for older siblings while parents are
visiting their child(ren) in NICU.
8.
Encounters with intact sets of multiples are painful for many
parents. Warn bereaved parents when parents of intact multiples
are planning to visit their children, especially at the time of
discharge. Also be careful about how much fuss is made over
complete sets (banners over the cribs, special treatment such as
requesting the most comfortable chair from a grieving mother so
a successful mother can nurse both babies, etc.)
9.
Ask parents if they would like any surviving multiples moved to
a different area of the unit if possible, rather than being
placed directly next to a complete set of twins or triplets.
Some may prefer for their living child(ren) to remain near a
complete set in order to retain the same nursing staff and other
caregivers. Also avoid putting a surviving child in the space
where a deceased child had previously been located.
Critically ill multiples
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ELIZABETH A. PECTOR, M.D.
APRIL,2000
1.
If a complete set of multiples is critically ill in NICU,
encourage parents to spend approximately equal amounts of time
with each child.
2.
Team meetings attended by the parents and the neonatologist,
primary nurses, and main specialists involved in the multiples'
care should be considered periodically. This is especially
useful if all babies are in precarious health (even before any
death), if a child has a poor prognosis but is surviving for
many days or weeks, at times when decisions regarding the
aggressiveness of support need to be made, and prior to
discharge. Team meetings avoid the potential for contradiction
among specialists and misinterpretations by parents. The time
and effort expended in discussing their children reassures
parents that their babies are valued.
3.
Allow parents, if they desire, to be present during
resuscitation attempts on their children, since many parents
have regretted not being present during their children’s last
few moments alive.
4.
Parents make decisions for or against resuscitation with very
heavy hearts. Do not give unsolicited opinions about either the
pointlessness of CPR, or the cruelty of letting a child die when
a miracle could happen. Parents should know they can always
reverse a decision if the child’s condition, or their desire,
changes. Parents sometimes develop doubts about the correctness
of their decisions months or years later. Reassurance, and
review of the clinical facts that led to those decisions should
be given by the neonatologists or other physicians who were
involved.
5.
DNR does not mean Do Not Respect. Babies should be kept clean
and warm, held when possible. Encourage parents to put
photos in the child’s crib, sing to their child, bathe him or
her, cover them with a blanket. Consider colostrum or breast
milk to help moisten a baby's lips and tongue; a mother who
never breastfeeds her baby can at least be consoled her milk was
used to comfort her dying infant.
6.
Allow parents to hold children who are dying or unstable if
resuscitation is declined. If parents are not present, but
request for their baby to be held, someone (e.g. a nurse,
relative or neonatal volunteer) should hold the baby as he or
she dies, call him/her by name, sing, rock or do whatever seems
natural to comfort the infant. Hearing that their baby was
lovingly attended at the moment of death has brought comfort to
many parents who were miles away, especially mothers recovering
from Cesareans or enduring their own medical complications when
their child died.
7.
Encourage parents to take frequent photos of their ill
child(ren), including some with any healthy previously
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ELIZABETH A. PECTOR, M.D.
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discharged multiple siblings if at all possible.
VI.
Death of multiples in NICU (see also V.)
A.
B.
When death of a NICU baby is imminent, offer the parents the opportunity to hold the child as s/he is dying. Provide the parents
with privacy behind a screen, and allow them some time alone
with their child, either in NICU or in a private room (without
abandoning them for a lengthy period). This is especially important
if the child is on life support and the parents have had to make the
difficult decision to discontinue it. A physician should explain
what will happen during and immediately after discontinuing life
support, and a nurse or doctor should periodically recheck both the
child’s and the parents’ condition.
1.
Respect the co-multiples' relationship with the dying child.
One nurse routinely allows dying twins to "say goodbye" to the
co-twin, a gesture parents greatly appreciate. Anecdotal reports
exist of distress, crying, etc. in a surviving multiple at the
time of distress or demise of a twin. This has even occurred if
the surviving twin is located miles away at the time of his or
her sibling’s death. Notify the parents of this possibility so
that they can notify the person(s) who are caring for any
surviving multiples at home. Staff should check on any stillhospitalized survivors around the time of demise of a multiplebirth child and be prepared to handle any potential
complications.
2.
Encourage parents to have photos taken of their child while
still alive, both of the child alone and with the parents
holding him or her. If the condition of their healthier
multiples allows, include the dying child in a group photo with
the other multiples. These should be 35 mm photos if at all
possible, since Polaroids are indistinct and often fade or
lose color quickly. Such photos of a child discontinued from
life support may be especially precious, since they may be the
only record the parents have of their child without tubes,
monitors, etc.
3.
Consider the possibility of home care with hospice support
for terminally ill multiples who may not need intensive care
in the NICU any longer. It might make for a more private and
humane death, with time for parents to have their multiples
together at home if the other children have already been
discharged. Investigate the resources available in your area
for such a situation. Examples of such infants include
anencephalics, children with lethal congenital heart disease for
whom surgery is not an option, Trisomy 13 or 18, and infants who
have sustained neurologic damage incompatible with long-term
survival.
Parents need to be told in person that their child has died. Refer to
I. B-D for other suggestions regarding parent notification. Ideally
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ELIZABETH A. PECTOR, M.D.
APRIL,2000
the neonatologist or primary physician for the baby should inform the
parents.
1.
An informed physician who cared for the child in NICU should
discuss the death in detail with the parents as soon as possible
following the death (within 24 hours if possible, with a
subsequent conference planned once all autopsy and other
clinical reports have returned weeks later).
2.
Inform the parents if any surviving multiples are at risk for
death from the same or a similar condition. Parents of preemies
may fear that something will happen to their surviving babies,
and such risks should be openly discussed, even if the survivor
appears to be thriving. Be encouraging without giving false
reassurances.
3.
Be sensitive to parental fears when planning discharge of
surviving NICU babies. Address issues such as need for
monitoring at home, home health nurse visits, more frequent
office visits with the primary doctor or any specialists after
discharge.
C.
Develop a symbol such as a butterfly, teardrop, purple sticker, etc.
for surviving childrens' charts and isolettes that indicate he/she is
a surviving multiple. (This should also be done for survivors of
intrauterine demise of co-multiples). Be sure staff coming on shift
are aware that the survivor is a twin/triplet etc., and that one
died, so unfortunate comments aren't made, such as “Where's the other
one?" or How’s the one at home doing?” This is especially important
at tertiary care hospitals, where a multiple-birth child may have
been transported after the death of one or more siblings.
D.
Some parents will want to discuss their loss, and others do not want
to be continually reminded of it. A nonspecific general inquiry can
be made periodically about how parents are coping with their
situation. If the parents mention the baby who died, staff can take
advantage of the opportunity to encourage parents to talk about their
deceased child, their grief, or anything else they feel they need to
discuss. They appreciate use of the child's name, and the
opportunity to talk in a private setting, e.g. "How are you dealing
with Bryan's death? Would you like to talk in my office?"
E.
See IV.E above regarding breastfeeding. Mothers under stress
from loss of one of their NICU babies need extra encouragement and
support to maintain their milk supply for the benefit of survivors.
F.
After a NICU death: with survivors
1.
Any remaining multiples should still be referred to as
“surviving twins/triplets” etc. unless parents request
differently. For a prolonged NICU resident, labeling the
isolette with the baby’s name is a good idea, but leave the
“Twin/Triplet A,B or C” designation intact as well, unless
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ELIZABETH A. PECTOR, M.D.
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parents indicate they would rather have it removed. See VI.C.
above for ideas about designating a symbol to communicate the
death to staff.
G.
2.
The physical placement of remaining multiples in the unit should
be sensitively managed. Don't put the survivor in the same spot
that a co-multiple died. As noted in V.A.8, parents may wish
surviving multiples to be placed as far away from intact sets of
multiples as possible. Please ask them their preferences if this
would require their care providers to change. Above all, notify
parents immediately if their survivor(s) need to be moved for
any reason. If parents are not aware of a change in location
for their child and arrive to find their child's gone from the
accustomed spot, they will assume the worst, that yet another
child has died.
3.
Do not pretend the death never occurred or try to focus
the parents’ attention solely on survivors. Use the names of all
of the children, living and dead. Jokes about how parents could
never have managed yet another critical NICU baby are very
inappropriate, no matter how difficult the present situation.
Ask them about their feelings, and offer hugs if they look
devastated. Keep offering referrals to counseling, support
groups and CLIMB.
4.
Offer to inform other parents of multiples in the NICU about the
parents' loss situation. Several parents of single survivors
have found comments from other parents of multiples, such as
"You can't possibly know how hard it is to carry two babies,"
quite upsetting. Obtain the parents' permission before
disclosing this information to other parents in the unit.
5.
Ask the parents how the daily stressful routine is affecting
them: how things are at home, how they’re handling a long drive,
meals, breast pumping, work, any conflicts with relatives,
finances, homecoming plans. Call them with even minor changes in
the status of any remaining children.
6.
Coordinate discharge plans with special sensitivity
to the concerns of a parent who may have lost a child after
a lengthy NICU stay. Their fears for their remaining
child(ren)’s health are reasonable, given that they’ve endured
at least one child’s death. Ensure more frequent and intensive
home nursing visits, repeated explanations of any home
monitoring or equipment, and close outpatient followup by the
baby’s pediatrician or family physician. Be sure the
neonatologist gives the survivor’s physician a comprehensive
summary of the hospital course and any ongoing problems.
After NICU death with or without survivors
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ELIZABETH A. PECTOR, M.D.
APRIL,2000
1.
Nurses, doctors and other staff who cared for the child in the
hours and days before death should promptly write down as many
details as possible about the child during this period, and
about how the death occurred. Special recollections about the
child as an individual (personality, temperament, etc.) will be
invaluable as well. The parents may not be ready to ask for
details until months or years later, but will greatly appreciate
specific information at that time. Parents cherish every comment
and memory about their children, and the NICU staff are sadly
among those who knew them best.
2.
Call the parents at specified intervals after death, e.g. 3 or 6
weeks, 6 months, and 12 months later, and ask how the parents
and family are coping. Send a card on the birthday and/or death
anniversary, using the name(s) of their child(ren), and share
memories of your time with the deceased baby.
3.
Consider giving the parents a gift, such as a signature bear or
a card, signed by a deceased baby's regular nurses, doctors,
therapists and other caretakers. Similar gifts or cards can be
given to any survivors on their discharge days. These will
become cherished keepsakes.
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ELIZABETH A. PECTOR, M.D.
APRIL,2000
VII.
Outpatient Followup: Obstetric and Pediatric considerations
A phone call in the days and weeks immediately after delivery is greatly
valued by bereaved mothers. Keep materials from CLIMB, and information on
perinatal bereavement groups and grief counselors, handy in your office,
and offer them at the first visit after delivery.
A.
Obstetric providers
1.
The 6-week checkup is a crucial time to ask how the bereaved
mother of multiples is coping. Acknowledge the mother’s grief
and loss, refer to all children by name, and make a note about
the death of one or more multiples in the patient’s chart so you
don’t mistakenly ask 1 to 12 years later, “So, how are your
twins doing?” Try to schedule a 6-week followup when other
pregnant women, especially those pregnant with multiples, will
not be in the office. The beginning or end of office hours or
just before lunch may be good times. Allow some extra time for
discussion.
2.
See B. below re: discussion of autopsy reports and zygosity.
3.
Discuss signs of depression, thoughts of suicide, the
mother’s feelings of how adequately she’s able to care
for surviving children at home, and assess her support
system. Refer to psychiatry for serious signs of
depression or maladaptive grief. All women who have had a
loss, even with survivors, should be repeatedly encouraged
to contact local infant loss support groups.
4.
Offer copies of prenatal ultrasounds (especially
ultrasound videos), X-rays, brief monitor strips, etc.
that validate the existence at one point in time of both
twins/all multiples together.
5.
Encourage contraception for 3-6 months after delivery if
all multiples died, longer if there are survivors, to
allow the mother to adequately process grief and care for
the survivors.
a. Older mothers, and those who have undergone ART
may need to accelerate this timetable, and should be properly
supported psychologically.
b. A woman may feel a very strong biological and emotional need
for a “replacement” pregnancy, but pursuing a subsequent
pregnancy too soon can result in both physical and
psychological problems for the mother. Reassure the mother
that such replacement desires are very normal, but that
temporarily postponing pregnancy to work through some grief
will increase subsequent pregnancy success. Particularly
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ELIZABETH A. PECTOR, M.D.
APRIL,2000
counsel against planned pregnancy with a due date very close
to the anniversary of the multiple pregnancy delivery date.
B.
C.
6.
Offer to schedule an appointment 3-6 months later. Assess the
parents' emotional state for evidence of pathologic grief.
Review the cause of death and/or causes of preterm delivery or
prenatal complications if desired. Discuss any increased risks
and monitoring that might be necessary in a subsequent
pregnancy.
7.
When women do conceive again, refer to a “pregnancy
after loss” support group, either before or shortly after a
subsequent pregnancy begins, to help the mother work through the
inevitable mixed feelings, anxiety, and common recurrent grief
that may surface. Mothers will never feel completely happy and
confident after having suffered a pregnancy loss, so don’t
expect them to act as enthusiastic about a subsequent
pregnancy as a typical expectant mother.
8.
Be careful with terms used to refer to a deceased child.
Parents don’t appreciate an off-handed comment such as “Oh, I
remember, you had a fetal demise.” More appropriate are phrases
such as: “One of the babies died,” “one was stillborn,” etc.
Encourage parents to get as many answers as possible from
autopsies, genetic studies, tertiary-center or expert
consultations, etc. This will help them make decisions regarding
subsequent pregnancy and may help in the care of any survivors.
1.
Review pathology results from any autopsy or placental
study, and arrange for testing for zygosity of the
deceased and surviving multiples if necessary. Zygosity is a
critical fact to determine if at all possible.
2.
Refer as needed, or when desired by parents, to geneticists,
perinatal specialists, etc. to review autopsy findings and
discuss chances of a problem recurring in a future
pregnancy.
3.
Soon after the loss, parents will most likely be focused
on obtaining the most accurate and complete explanation possible
for why their child died, and assessing immediate risks for
any survivors. Months or years later, when contemplating another
pregnancy, the same information may need to be reviewed again,
with an emphasis on different issues. Be patient with what seem
to be multiple requests to go over the same facts.
Patients who have experienced a mixed, traumatic delivery may wish to
change caregivers, in order to avoid reminders of loss, “bad luck,”
and providers’ discomfort. Respect requests for transfer of records
to another practitioner or hospital. The better a loss experience is
handled when it occurs, and the more positively grief concerns are
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ELIZABETH A. PECTOR, M.D.
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addressed subsequently, the more likely it is that the family will
continue care with their current providers.
D.
Pediatric and Family Practice providers
Make note of the surviving-multiple status of survivors you follow in
the office, and ask about any unusual behaviors, as well as how the
parents are coping. Obtain information regarding the delivery,
autopsy of deceased child(ren) if done, and zygosity testing from the
obstetric provider or hospital. (see B. above) Refer parents to
CLIMB for information on raising surviving multiples.
1.
Some studies have shown rare but increased risk of central
nervous system injury (sometimes with severe psychomotor
disability), renal anomalies, digestive anomalies, lung
infarcts, and cutaneous, facial or limb abnormalities in
survivors of a twin or triplet's intrauterine death, especially
in monozygotes. [references: Gaucherand et al, Eur J Obstet
Gynecol Reprod Biol 1994 55:111-115; Prompeler HJ et al, Acta
Obstet Gynecol Scand 1994 73:205-208.] Be alert for problems.
2.
Help the parents separate their own adult-level grief from the
more primitive grief the surviving multiple may feel.
a. Appropriate support and counseling referrals for the parents,
enabling them to grieve in a healthy manner, will prevent
them from projecting their own grief and sadness onto a
survivor.
b. Adult surviving twins, especially monozygous twins, often
report a sense of loss or loneliness even prior to becoming
aware that they are twins. However, parents should not assume
that their child is predestined to be maladjusted, lonely, or
depressed. Informing parents that their child most likely
will be healthy and happy, just different in some ways than
if their sibling(s) had survived, may reduce guilt parents
may feel at having letting their survivor down by losing
his/her sibling(s).
3.
Encourage parents to include the dead children in conversation
and mementoes from the beginning. This will ensure that the
survivor always knows of the co-multiples and avoids the anxiety
of a formal "truth-telling" session later in childhood. Parents
can acknowledge to their survivor(s) that they’re sad about the
loss of the siblings, while adding how happy they are that their
survivor(s) are alive.
4.
There are
survivors
comparing
extent to
anecdotes
several behaviors in early childhood which parents of
have observed. No scientific study has yet been done
survivors to any control groups to determine the
which the loss experience may play a role, but these
are detailed for reference.
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ELIZABETH A. PECTOR, M.D.
APRIL,2000
a. Early childhood: Irritability, inconsolability, need for
constant physical contact with parent, exaggerated separation
anxiety, fascination with reflections, preference for sleep
position that replicates intrauterine positioning, insomnia,
night terrors, nightmares, attraction or anger toward twin
playmates or depictions of twins, or imaginary play with
deceased sibling(s) or other fantasy playmates, dreams or
discussions about what all of the multiples used to do in the
womb together. Some children have asked specifically about
the one who was missing, even if they were not told by
parents about the deceased multiple. Drawings of self may
include 2 figures, or one figure with parts missing.
b. Older childhood: Feelings of something missing, loneliness,
perfectionism, a feeling of trying to live for two. Some may
believe their deceased twin's spirit is helping them or
looking out for them, depending on the family's religious
beliefs. Some may express feeling guilty for surviving.
c. Pretend play of survivors or other siblings with the deceased
child is not a cause for concern if social interactions are
unimpaired and signs of serious depression are absent.
5.
Parents may be reluctant to discipline a surviving multiple, due
to sympathy/guilt over losing their sibling, or feeling so
fortunate to have the remaining child they can’t bear to correct
negative behaviors. Remind them that their child still needs
appropriate guidance. Encourage appropriate discipline methods
and watch for disruptive behaviors that require counseling for
parents and/or children.
6.
Other potential parenting problems include difficulty bonding,
resentment toward survivors, blaming the surviving twin for the
death of their co-twin, neglect or abuse of the survivor, and
overprotection due to fear of another death occurring.
Idealization of the dead twin is a risk if parents do not allow
themselves to grieve, and increased resentment and unrealistic
expectations of the survivor may result. Parents should not
overemphasize their grief at losing the opportunity to raise
twins; this causes problems for some survivors. Parents also
should not belabor their grief for loss of their favored-sex
offspring, since that can cause feelings of inferiority in
survivors. Initiate any necessary counseling referrals if signs
of these problems are seen.
7.
A multiple-birth loss with survivors is likely to result in more
ongoing discussion of death than in singleton-bereaved families.
Families may need guidance on how to discuss death issues with
all of the children in the family, including earlier- and laterborn children. Consultation with perinatal bereavement
consultants and mental health specialists may be helpful, in
addition to resources given in this packet.
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ELIZABETH A. PECTOR, M.D.
APRIL,2000
VIII.
For nursing and bereavement staff:
A.
Realize that the short time the mother spends in the hospital will be
highly emotional and stressful for the family. This is the only time,
aside from a possible funeral service, that families will have with
their children who died during pregnancy, delivery or the early
neonatal period. Respond to the parents' expressions of grief,
without over- or under-emphasizing the loss. Don’t try to talk
parents out of sorrow, minimize it with hurtful comments (see IX.
Below), or otherwise "focus on the bright side.”
1.
Be attuned to your own emotional reactions, since loss in
multiple birth can be overwhelming to professional staff as well
as to the parents. Help each other out, and take turns caring
for surviving children or talking with the parents, if the
primary nurse or counselor feels overwhelmed with the situation.
2.
For mothers who lost all their multiples, or will be discharged
without any of their children, develop postpartum discharge
instructions that do not make reference to a baby. The mother
needs information on how to care for herself without references
to breastfeeding or napping when the baby naps, when there will
be no babies at home. Work with your OB staff to alter your
typical discharge instruction handouts with this in mind.
3.
If your hospital has regulations mandating pre-discharge
teaching, or watching videos, about baby care, breastfeeding,
infant safety, etc., allow parents to refuse this information if
they feel overloaded. Ask them if they feel up to discussing
their new baby’s care, and if they don’t, give take-home
handouts and videos. Visits by a home health care nurse can
verify that parents have adequate knowledge and ability to care
for their newborn(s). A bereaved mother of multiples who has
surviving babies is trying to say hello and goodbye to her
deceased baby(s), plan a memorial, burial or cremation, and
learn about the grief process. Care for her survivor(s) is also
important, but there will be more time and assistance available
for that later than for the in-hospital bereavement process.
B.
Some parents have felt that social workers were merely “going through
the motions” or completing a checklist of topics to discuss with
parents. Others have felt that only insurance or home-care concerns
have been addressed, with little attention to their mental health
needs. Try to be as sincerely involved as possible in advising these
parents, and come to terms with your own discomforts prior to talking
with parents so they don’t perceive you as being distant or uncaring.
C.
Bereavement counselors experienced in infant loss should be available
to consult with parents in the hospital. Have materials on infant and
multiple loss available before a loss occurs, so you’re ready when it
happens.
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ELIZABETH A. PECTOR, M.D.
APRIL,2000
1.
See resource lists and copies of CLIMB advice for grief
counselors (following this protocol).
2.
Obtain professional-oriented information from CLIMB,
professional literature discussing multiple birth loss, and
other available resources. Give information to parents on
support groups and resources for multiple loss, and information
from such groups regarding burial and memorial options, sample
birth/death announcements, and mementos.
D.
Be sensitive to cultural or spiritual beliefs about twins. Obtain
permission prior to photography if there is any doubt as to cultural
acceptability or parental preferences. One Native American mother did
not want her deceased twin’s body near the survivor, fearing it would
draw the survivor’s spirit away, also. She also refused to allow
people to say the name of her dead child, feeling that doing so would
bring the dead child’s spirit back from its peaceful resting place.
A Hopi belief reportedly holds that the spirit of a deceased twin
enters the survivor to make them a stronger person. Some non-Native
American parents also feel their deceased child's spirit is present
to help their survivor, and may attribute a fragile survivor's life
to the spiritual help of its twin. The Yoruba people of West Africa
have a high rate of twinning, and beliefs about special status and
supernatural powers of twins arose in the 19th century. "Ere ibeji,"
carved wooden images of a deceased twin, were made as a new home for
the deceased twin's spirit. Mothers lavished special care on these
carvings, carrying them throughout the day, washing and clothing
them, "nursing" them at the same time as the survivor, rubbing them
with special oils and decorating them. The tradition continues today,
sometimes with store-bought dolls.
E.
Avoid having the mother alone immediately after being informed of a
prenatal loss or complication, or during subsequent testing,
delivery, procedures, etc. She’ll be in shock and should have a
support person available, preferably spouse, parent, friend, etc.
F.
Be respectful of the body at delivery and during the hospital stay,
treat it gently, wrap it, place it on warming table, or in a bassinet
or basket.
G.
Viewing the deceased child after delivery
1.
Discuss wishes with parents prior to delivery in the case of
intrauterine fetal demise or likely death soon after delivery.
If they wish to immediately view a stillborn infant in the
delivery room, allow this after preparing them for the
appearance of the baby.
2.
With few exceptions, viewing an anomaly, or a long-demised
fetus, is better than the parents’ imagination of it. Encourage
the parents to view a malformed fetus/infant after preparing
them for what they will see. Particular care must be taken to
adequately prepare parents for the viewing of a child who was
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ELIZABETH A. PECTOR, M.D.
APRIL,2000
dead in utero longer than 10-14 days. Careful draping with
receiving blankets or towels to hide the most disfiguring
aspects of an anomaly will allow the parents to focus on the
intact parts of their child. If the parents are reluctant to
view the child, consider taking a Polaroid to show to the
parents (or to the father/support person first) to help them
decide if they want to hold or view the baby in person. Parents
can be informed of the potential value of viewing the deceased
fetus or child for grief resolution (see also comments in
VIII.L-M below). If they still refuse to see or hold their
child, respect their decision without unwanted coercion.
3.
When presenting parents with their swaddled deceased child,
offer to unwrap the baby to show them the entire body. Parents
may not think to ask you to do this, and may not do it
themselves when left alone with the body.
4.
Offer to give the parents time with both/all multiples together,
in order for them to have some precious memories of their
children as a complete set, and for the living children to "say
goodbye," in a symbolic if not practical sense. Be aware of the
possible cultural beliefs about twins (VIII.D) prior to strongly
encouraging this.
H.
Parents who have older children may find it difficult to decide
whether or not these children should see their deceased sibling(s).
Help them explore this issue and support whatever decision they make.
A person informed about the grief process in children should help
parents review the benefits and risks of tbeir child viewing the
decedent(s). Similar decisions regarding attendance at wakes,
memorial services, etc. will need to be made. The attitude of the
adults involved is crucial to helping a sibling view a lost baby in a
positive and healthy manner. Children can readily accept simple
matter-of-fact explanations, e.g. that an anencephalic baby died
because he had a "broken head." Encourage parents or other adult
family members to emphasize the normal features of a lost baby if
they choose to show the body to an older sibling.
I.
Photography
Take 35 mm photos, Polaroids, and official hospital photos. Always
take photos, even if the parents don’t request them (provided no
cultural beliefs prohibit photos). Many parents will later want
them, even if they initially refuse. Save them in a file for future
availability. Black and white photos have the advantage of not
being susceptible to color change over the years, and may present a
less shocking or objectionable appearance for fetuses which have been
dead for days to weeks. Be sure to obtain some color photos in
addition to black and white.
1.
Obtain photos of the following:
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ELIZABETH A. PECTOR, M.D.
APRIL,2000
a. Deceased child alone: both dressed and undressed. Parents
holding swaddled deceased multiple.
b. All multiples together (if at ALL possible), with hands
touching. Parents holding both living and deceased multiples
together, as well as each individually.
c. Ask the parents if they had any special outfits ready for
their multiples, and offer to photograph them together while
all are wearing them (survivors’ condition allowing).
J.
2.
35 mm photos are much better than either Polaroids or hospital
ID photos. Polaroids can fade over time and usually show much
poorer resolution and coloring even at the time they’re taken.
The lighting used in taking hospital ID photos creates a much
more morbid (purple) appearance than 35mm photos. For best
results, obtain all types of photos and let the parents choose.
3.
Be sure the photography company that takes official hospital
baby photos prior to discharge is aware that one (or more) of a
set of multiples was deceased, and that they will provide photos
of the deceased either automatically to the parents, or upon
their request. One parent had to make over six phone calls to
override one company’s policy that photos of deceased babies are
not provided to parents, "because it might upset them.” Also be
sure that hospital baby photos are routinely taken, even if
death is imminent (e.g. sick NICU baby).
4.
If parents refuse to allow photos of themselves with their
multiples, or with their deceased infant(s), you may wish to ask
to take a photo of the parents separately from the babies, e.g.
with the parents’ hands in a cradling position or on their laps,
so that the image of the baby(s) may be superimposed on the
parents’ photo by digital computer manipulation at some future
time if they should later desire a photo of the family together.
Parents have expressed later regret at not having obtained all
possible photos during hospitalization, but excessive coercion
of unwilling parents is unwise at an already traumatic time.
5.
If surviving and deceased babies are unable to be photographed
together, obtaining separate photographs in similar poses on a
neutral background will facilitate later digital construction
of a group photo.
6.
Photos of all multiples together are important, especially
with monozygous multiples, due to a natural tendency of mothers
to confuse the babies with each other later on. (see L.3 below)
Ask parents what they’ve named both surviving and deceased babies,
and refer to them by name. Help parents negotiate decisions on
autopsy, genetic testing, choices of funeral homes, burial or
cremation, cemeteries, clergy contacts, etc. (see also R. below)
Parents should be encouraged to ask funeral homes about the
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ELIZABETH A. PECTOR, M.D.
APRIL,2000
possibility of delaying funerals until weeks or months later. Some
parents may want to see and hold their child but may be emotionally
or physically unable at the time of death due to prolonged concern
for the health of mother or survivors. Memorial services can also be
held months later if the parents aren’t up to it at the time of
death. Consider providing a selection of burial gowns in a range of
sizes from VLBW to term size infants for purchase. Many parents
haven’t provided for the possibility of extreme prematurity, have no
clothes at home and little energy to shop for suitable attire.
K.
Parents experiencing a multiple-birth loss lose both a unique child
or children, and the opportunity to raise their twins, triplets, etc.
as an intact unit. Be sensitive to the concept of the multiples as a
unit, by photographing all together, bringing a deceased child's body
to the parents to hold by a survivor, etc. Treat mementos for all
multiples, alive and dead, alike as much as possible. If memorial
footprints, locks of hair, fingerprints, ID bands, gowns, hats,
rings, blankets, etc. are given for the deceased infant, offer the
same mementos for any survivors (even if it’s not typical policy for
live infants.) Memorials of two sets of footprints, or two locks of
hair, rings, etc., one from each twin, can be invaluable in helping
parents process the loss of “TWINS” as well as the loss of their
child. If hospital policy prohibits obtaining footprints or
handprints on live babies, parents should be allowed to obtain these
themselves using non-toxic ink. Also very meaningful are plaster
impressions (molds) of the hands and feet of the lost child, with
matching impressions of hands and feet of any survivors. Finally,
medical paraphernalia such as thermometer, blood pressure cuff, tape
measure used to determine length, X-rays, or heart rhythm strips are
appreciated by parents as mementos.
L.
Confusion and a sense of being overwhelmed with a multiple-birth loss
may affect parents and professionals alike.
1.
With loss of all of the babies, it can be difficult
for the parents to process the loss of two or more separate
individuals. There is a tendency for bereavement professionals,
overwhelmed themselves, to encourage the parents to grieve
only the loss of “my triplets” or “my quads.” As difficult
as it may be, the parents need to be encouraged to remember
these children individually, by any unique characteristics
that were detected during or shortly after the pregnancy.
2.
In the case of an intrauterine fetal demise weeks or months
before delivery, it can be difficult for parents to mourn the
loss of “my twins” or “my multiples” when there is little
remaining of one or more of the fetuses. Help them to recall
something special about the child, or the pregnancy prior to the
demise, to help them appreciate both the individual child lost,
and the fact that there once was an intact set of multiples
living in the womb. Creative suggestions may help parents with
no tangible evidence of their lost child(ren) to develop unique
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ELIZABETH A. PECTOR, M.D.
APRIL,2000
ways to honor them. See X.H for suggestions, and also II.A.4 for
suggestions on preserving early ultrasound images.
3.
Maternal confusion can take several forms. Without photos
or mementos of the multiples together, mothers later can feel
they didn’t really have twins, they had “two babies, one
dead, one alive,” and it’s difficult to conceptualize the babies
as a unit with no proof that 2, 3 or more unique individuals
were all together “under one roof” in the womb. Confusion of
identical twins with each other, e.g. the mother feeling that
she is dressing her survivor for his/her own funeral because
s/he looks just like the one who died, is especially likely if a
mother didn’t view or hold the deceased baby. Don’t tell the
parents of a monozygous multiple, "The deceased child looked
just like the survivor because they were identical, so you
really don’t need to see the dead baby.” It’s important to try
to create separate memories of each child, especially when one
or more are dead and others are living.
M.
Encourage the parents to hold their deceased child(ren), and
offer the opportunity several times during the mother’s
hospitalization. Leave the body with the mother as long as she wants
it near her in her room. If the parents don’t want to hold the baby
initially, ask again. Parents often later regret not holding or
viewing their deceased baby. Don’t rush the parents to give back the
baby’s body. Also encourage them to look at the baby’s whole body,
unwrapping the swaddling blankets yourself, or helping them to do so.
Offer for the parents to bathe or dress the body if its condition
allows. Such actions may be the only “motherly” acts ever possible
for this child.
N.
Don’t forget the father: He just lost a child, too! He may need
extra support due to dealing with multiple complex situations at
once: e.g. sick or dying baby in one hospital, mother in another,
anxiety over his wife’s life-threatening complications after delivery
in addition to one or more babies dying before, during or after
delivery. He may also be managing older siblings at home, and
attempting to meet his own work responsibilities. Ask specifically
how he’s doing. Fewer fathers than mothers seek counseling for
a perinatal loss, but some greatly appreciate it and may continue
for years, so don’t assume he wouldn’t want such help.
O.
Ask parents how they want staff to refer to their surviving
multiples. Most will probably want to continue to call them
twins, triplets, etc. However, some parents may prefer to have a
twin or triplet label changed to simply “Baby Smith.”
P.
Options for handling of the deceased' child(ren)'s body(s) must be
thoroughly explained. If hospital disposition is planned, hospital
personnel must sensitively but accurately explain what happens to the
body, where it goes after processing, and if the parents will have a
place to visit the body (e.g. a public or hospital burial ground). If
possible in extreme circumstances (e.g. life-threatening illness of
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ELIZABETH A. PECTOR, M.D.
APRIL,2000
the mother or another family member) arrange for preservation of the
children's bodies so that they can be viewed when the mother is
physically ready, even if it's weeks later. Private cremation or
burial should also be explained to the parents by either a funeral
home or crematorium. Explanation of autopsy and surgical
pathological examination procedures that can affect the body's
appearance should be discussed with parents prior to such procedures.
Q.
Notify the funeral home and newspapers the deceased was a
twin/triplet etc. so the information can be included in the obituary.
This can prevent awkward encounters between the bereaved family and
acquaintances unfamiliar with the unique situation. Obituaries
generally appear before birth announcements, and people may write
heartfelt letters about the tragic loss of what they believe to be
a single baby, only to have a surprise encounter with the parents
and survivor(s) months later, wondering if they adopted or are babysitting someone else’s child.
R.
Advocate on behalf of families to funeral homes, churches or
cemeteries that may be insensitive to a deceased child’s multiple
birth status with regard to obituaries, memorial services, or wording
on memorial cards, bronze markers or headstones. Parents have had to
fight to have the word “twin” included on a bronze marker and have
had very disturbing encounters with cemetery employees. Some funerary
and cemetery workers are incredibly lacking in sensitivity, and such
issues may come up in support groups. A group leader’s help in
conflicts could be pivotal in resolving a painful situation.
S.
Encourage newspapers to mention stillborn multiples, or those who
died shortly after delivery, complete with length, weight and name
information, when announcing the birth of any surviving multiples.
Creating an “in memoriam” section for deceased babies (single as well
as multiple) could also be a deeply meaningful new local newspaper
tradition. Parents who lost multiples, and were dearly looking
forward to the official announcement of their celebrity parenthood in
the local paper, receive another denial of their multiple-birth
parenthood when sole survivors are announced as though they were the
only baby carried during the pregnancy. Community members can be
inappropriately enthusiastic when congratulating parents on their new
arrival if they’re totally unaware of the accompanying loss.
T.
Offer to help provide information about multiple birth loss to a
patient’s social network (e.g. family, friends, neighbors, religious
congregation, or place of employment). Provide names and numbers of
Mothers of Twins/Multiples Clubs, who can help arrange for sale
donation or exchange of unwanted double or triple strollers, cribs,
car seats, etc. CLIMB articles, and pages 35-37 can help prevent
well-intentioned but hurtful comments and actions.
U.
Know that encountering, or hearing about, intact sets of multiples is
painful to most newly-bereaved multiple birth parents. Be
understanding with bereaved families who have close relatives or
friends with intact sets of multiples. Learning to deal with “Close
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ELIZABETH A. PECTOR, M.D.
APRIL,2000
Encounters of the Twin Kind” takes time and patience and a
willingness to educate “successful” multiple parents to be
sensitive to loss.
V.
Be certain that the hospital billing department and administrative
offices, and parents’ insurance company, are aware that a child died,
and that bills and correspondence will not be sent in the dead
child’s name to the family. One mother was devastated when a bill
addressed to her deceased child arrived at her home two weeks after
his death! Others received patient satisfaction surveys for their
babies who died at a children’s hospital, asking how they enjoyed
their stay! Give parents information on how to remove their name from
mailing lists advertising infant or multiple-birth products,
especially if all babies from the pregnancy died.
W.
At discharge, be sure there will be some support system, from family,
friends, neighbors, religious congregation, loss support group, or a
counselor, so parents aren’t isolated at the time the reality of
their loss sinks in. Call a few weeks later and ask how parents are
coping, ask if they need further reminders or information.
Some parents accidentally discard grief support info.
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ELIZABETH A. PECTOR, M.D.
APRIL,2000
HOW EXTENDED FAMILY OR ACQUAINTANCES SHOULD RESPOND TO MULTIPLE BIRTH LOSS:
1.
Parents' self-esteem has often been shattered by what for many
is the most devastating event in their lives. They may not be up
to talking to many people, even immediate family. If your news
is filtered through a spokesperson, don't feel rejected. Parents
may need privacy & time to sort out their feelings before
interacting with others.
2.
Some parents may appreciate a card saying "Congratulations on
the birth of your twins/triplets" with a notation of condolence
inside. If there are survivors, consider sending two separate
cards (one for congratulations, one for sympathy) or a
handwritten note mentioning both events. Ignoring the loss, or
avoiding acknowledgement of the event altogether due to feeling
awkward, can worsen the bereaved parents’ burden.
3.
Instead of sending flowers, consider donating to a charity in
the name of the lost baby. Some parents are overwhelmed by
flowers, which are something else that dies too soon.
4.
Know that any surviving children are still twins, triplets etc.
Parents usually call them survivors of the original number.
5.
Parents should be asked what they want done with duplicate
clothing, double strollers, extra cribs, gifts for the deceased
child, etc. Many parents want to keep such items in memory of
their lost child(ren). Others would rather put away or give away
these items. It’s thoughtful to donate unwanted gifts in the
deceased child’s name to a charitable organization, or
arrange for sale through a Mothers of Twins/Multiples Club so
the parents don’t need to make that contact. Don’t try to guess
the parents’ desires in these matters, because a mistaken but
well-intended action might be seen as uncaring or insensitive.
6.
Personalized or handmade items (blankets, crocheted or knitted
clothing, posters, artwork or cross-stitch), especially those
including a deceased baby’s name, may become a treasured
keepsake. Present it to the family in memory of the lost child,
and if it is refused, save it for a future occasion when they
might want it (e.g. first birthday or death anniversary). Such
items shouldn’t be later given to another child in the extended
family. The bereaved parents will think their lost baby is being
forgotten and its gifts thoughtlessly recycled.
7.
The deceased child(ren)’s name(s) should be respected as a
permanent part of the bereaved family, especially if there are
survivors. The name(s) will be used often within that family.
Children of extended family members, friends or neighbors born
later who are given the same name(s) will constantly remind
bereaved parents of their lost child. People considering using
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ELIZABETH A. PECTOR, M.D.
APRIL,2000
the name of a parent’s deceased multiple, even if they intend it
to be in honor or memory of that baby, should discuss it with
the grieving parents first, asking their feelings and permission
rather than announcing it as a final decision.
8.
Encountering intact sets of multiples is painful to bereaved
parents. They don’t want to hear other multiple-birth stories
just because they had a multiple pregnancy. It merely reminds
them of their own failure to bring all of their babies home.
Don't pressure parents into attending social situations where
they may face difficult twin encounters, or tell them to
suppress their feelings out of consideration for others. Parents
need time and patience to learn to deal with “Close Encounters
of the Twin Kind.” Forgive apparent rudeness, envy, avoidance &
tears if you’re a parent of multiples, or a multiple, yourself.
With time, grieving parents will handle reminders better.
9.
Immediately after their child's death, most parents want loved
ones to admit their child's death is tragic, listen to their
mixed-up feelings when they need to talk, and help them get
practical things done that they cannot manage themselves for
physical or emotional reasons. They may need advocates to help
them get what they need from hospitals, funeral homes, insurance
companies or other bureaucracies, since they may be too
distraught to fight for themselves. Support them through the
ups & downs of their grief process. Realize it will probably
take a few years for them to work through this major trauma; for
some it may be even longer. With help from family, friends,
peers and sometimes professionals, they can heal, but will heal
with a scar. They will never be the same as they used to be.
Expect them to include the children who died as part of their
family history in some way. In one mother's words, "I'm moving
on, but I'm taking my baby with me."
10. Comments: see IX. Avoid platitudes. Distressing comments try to
minimize or shorten grief; explain the death in spiritual terms
which the parents may not believe; or encourage parents to look
on the bright side because things could have been worse.
Understanding this, try your best to avoid the "Don’t Say"
comments. If you slip, apologize to the parents, since they
probably heard you anyway. Please mention the deceased babies
by name occasionally, and don't fret if you accidentally call a
living child by the dead one's name. Parents like to know their
children aren't forgotten, and the parents may even make the
same mistakes!
IX.
DO SAY:
I’m so sorry about your child's death.
I'm hurting with you.
I don’t know what to say.
I can't tell you how badly I feel about your loss.
I'm so sorry you and family had to go through this pain.
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APRIL,2000
This isn't fair.
Some things that happen just don't make sense.
I’m here to listen whenever you need to talk.
Is there anything I can do for you? Anyone I can call?
I can’t imagine how you must feel. Please tell me.
I'm happy you have your survivor, but also very sad one baby died.
This must be so hard for you.
DON’T SAY:
At least you still have one (two, or however many) left.
At least the baby was a twin, otherwise your grief would
be so much worse.
At least you have other children.
You will always have a reminder in his/her twin.
Since they were identical, you'll always know what he'd look like.
Don’t be selfish. Be thankful you still have one, and get over it.
See the glass as half full, not half empty.
Focus on the living, your survivor needs you.
You can always have another baby (or try again).
You're young, you can always have other multiples.
Things happen for a reason.
It was for the best.
Since one of your twins died in utero, it’s just a single
pregnancy now.
You would really have your hands full if all the babies survived.
Humans weren't meant to have litters.
God must have known you’d only be able to handle one baby.
God never gives you what you can’t handle.
It was God’s will.
God gave me twins to help you through your loss.
Count your blessings.
You wanted your babies more than you wanted God, and that’s why he
took them.
You must have known this could happen, since they were so premature.
You knew he was going to die.
The baby would have been handicapped or had major problems
if she survived, so you’re lucky this happened.
I'll bet you're glad you don't have to bother with the other one now.
It’s better it happened now and not months or years from now when
you really would have been attached.
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APRIL,2000
X.
Opportunities for further assistance to these families
A.
Large medical centers with a high proportion of multiple births
could form a hospital-sponsored bereavement program specific for
multiple-birth parents, especially for parents with premature
survivors with special needs.
B.
Consider initiating a culture-specific or language-specific
(Hispanic, African-American, Native American, etc.) support network
for parents with multiple birth loss.
C.
When bereaved parents of multiples attend a general pregnancy loss
support group, inform other parents that research indicates parents
with a multiple birth loss, even if there are survivors, have a grief
reaction just as deep as parents with a singleton loss. All losses,
regardless of how early they occurred in pregnancy or whether the
parents have living children, should be considered important to the
affected parents.
D.
Form a parent contact list of parents with a multiple birth loss who
may wish to be in contact with other parents with similar losses at
your institution in the future, in order to offer mutual support.
Such an informal network can work well without the usual structure of
meetings set up by a third party at a regular time and place. Parents
should be cautioned that facilitation by a parent or professional
properly trained in bereavement support is highly encouraged if they
wish to establish a formal support group.
E.
Contact local mothers-of-multiples clubs for ideas on ongoing
bereavement support, or to help sell undesired multiple-baby
supplies. Some MOTCs may be willing to provide names of other
parents who have suffered a loss, and work cooperatively to
establish a formal or informal support system. They may also have
collected some bereavement support materials which can be of use to
patients at your institution.
F.
Remembrances of deceased multiples at holidays, anniversaries, family
or religious gatherings are much appreciated. Baptism or
presentation of survivors at a religious congregation can be an
opportunity to also remember the deceased children from the
pregnancy. Unveiling a tombstone (Jewish custom on the anniversary of
death), support group memorial services or balloon releases, poetry
readings, or combined birthday/anniversary parties acknowledging the
birthday of survivor(s) and the memory of the womb-mates have been
successful for bereaved parents and their understanding friends and
family.
G.
Some parents have scattered their deceased children's ashes in a
place that was meaningful to them or their family, on a death
anniversary or birthday. Others have kept ashes in a special place at
home, planning for surviving multiples to help decide on the final
disposition of their siblings' ashes. This may create unhealthy
psychological pressure and responsibility for some survivors,
37
MANAGEMENT PROTOCOL FOR
PERINATAL MULTIPLE BIRTH LOSS
ELIZABETH A. PECTOR, M.D.
APRIL,2000
however, so careful thought should be given to how and when to
introduce this idea.
H.
Parents have developed many creative ways to honor their lost
children. Suggestions that may be useful to parents, even years
later, include: planting trees in honor of all children living and
dead, making ceramic or pottery urns, vases or candle holders,
decorating candles in memory of a lost child (good activity for
siblings or co-multiple survivors), designing or purchasing jewelry
in honor of the deceased child(ren) and/or all children living and
dead, making a quilt square in honor of a lost child, inscribing lost
children's names on a memorial wall, plaque, brick or statue,
collecting angel figurines or placing one in the garden in memory of
a dead child, assembling a photo album or memory album with
recollections of the pregnancy, writing poems or letters to the lost
child(ren), making holiday ornaments for the lost children, composing
a song or purchasing a musical recording that had special meaning
during the pregnancy. One mother had the baby roses from her
daughter's casket dipped in gold and made into a bracelet. Many
parents have developed Internet web pages devoted to their lost
children. One couple had a stork sign in their yard to announce
their premature survivor's homecoming from the hospital after several
months, with an angel sign beside it announcing the arrival of his
twin's spirit in Heaven. Sketches, imaginative portraits done by
artists sensitive to bereaved parents, and computer-enhanced photos
can be meaningful visual mementos. Some parents have formed support
groups, held fund-raising memorial walks, or started writing projects
related to multiple birth loss. Encourage parents to use their own
talents to find a way to honor their lost children.
38
MANAGEMENT PROTOCOL FOR
PERINATAL MULTIPLE BIRTH LOSS
ELIZABETH A. PECTOR, M.D.
APRIL,2000