MOURNING MULTIPLIED: ASSISTING FAMILIES WITH PRENATAL OR
INFANT LOSS IN MULTIFETAL PREGNANCIES
ELIZABETH A. PECTOR, M.D.
SEPTEMBER, 2000
1
I.
UNIQUE ASPECTS OF MULTIFETAL PREGNANCIES
Multifetal pregnancies are high risk, both medically and psychosocially. Perinatal morbidity and
mortality are higher for multiples. Parents react with ambivalence to diagnosis of multiples. They
gradually adapt to the high-risk nature of the pregnancy, and may face difficult medical choices. They
alter self-care behavior to optimize outcome, and begin to prepare financially, emotionally and
logistically for the arrival of more than one child. Parents of intact sets of multiples exhibit greater
financial, marital and emotional stress and depression than parents of singletons, even 4-5 years after
delivery. This is even more true if there is a neonatal death of one twin, or disability in one or both.
Care of triplets & more is especially fatiguing. Multiples are at greater risk of child abuse and neglect.
A. Medical loss scenarios in pregnancy and infancy: statistics and potential medical concerns.
Perinatal mortality reported in literature ranges from 2-5% for twins, 4-12% for triplets, 10% and
higher for quads and more. 1997 U.S. infant mortality was 3.20% for twins, 7.18% for triplets.
1.
2.
First trimester loss:
a.
Complete miscarriage: about 6% in twins, 7-11% triplets, 16% quads & more.
b.
Partial miscarriage: "Vanishing twin" in 20-50% of twin conceptions, and fetal resorption
of at least one fetus in 40-50% of triplet & higher order conceptions after IVF.
c.
Multifetal pregnancy reduction (MFPR): Usually performed at 10-12 weeks to reduce
number of fetuses from 3 or more to 2, thus reducing morbidity, mortality and prematurity
risk. Ultimate pregnancy outcome is related to number of fetuses originally present and to
the method of reduction. Parents who have suffered previous miscarriages may be at
greater risk of losing the whole pregnancy after MFPR. Risk of total miscarriage after
MFPR averages 8%.
d.
Selective termination for anomaly: 2.5% incidence of this scenario in retrospective
Danish study of twin pregnancies. Outcome from experienced centers results in viable
delivery in over 90% of cases (total loss occurs in 5- 9% depending on when in pregnancy
termination was performed, and did not depend on reason for termination.)
Second trimester loss:
a.
Intrauterine fetal demise (IUFD) after first trimester: single demise occurs in 4-8% of twin
pregnancies and 11-17% triplets past first trimester. Generally, demise before 16 weeks
does not pose greater risk to the pregnancy than if it had been a singleton conception from
the start. Risk to surviving fetuses after 16 weeks is higher if placenta is monochorionic
(MC). Conservative management (continuing pregnancy with close monitoring of
survivor) is preferred, as hastened delivery brings prematurity risks. Survivors have
greater risk CP, neurologic or (in MC) organ damage.
b.
Selective termination for anomaly: as per 1.d.
c.
Delayed interval delivery: attempts to prolong pregnancy after preterm delivery of one or
more children. Death of first child may occur promptly (while mother still pregnant with
MOURNING MULTIPLIED: ASSISTING FAMILIES WITH PRENATAL OR
INFANT LOSS IN MULTIFETAL PREGNANCIES
ELIZABETH A. PECTOR, M.D.
SEPTEMBER, 2000
2
remaining multiples) or after weeks or months in NICU. Rare cases can result in
pregnancy continuation for 2-3 months, but more typical is several days to weeks.
d.
3.
4.
5.
Premature delivery before viability: Risk of very low birth weight is increased in
multiples, with associated higher mortality. Twins are 8 times more likely to be under
1500 g (VLBW). Triplets and other higher-order multiples are 33 times more likely to be
VLBW--nearly 40% of such babies.
Third trimester loss
a.
IUFD: Continuing pregnancy with monochorionic survivors may rarely be associated with
complications. Medical risk of continuing pregnancy vs. immediate delivery needs to be
individually determined in each instance. Expectant management with close monitoring of
surviving fetuses is generally recommended.
b.
Intrapartum demise: historically greater risk of this in second twin.
c.
Delayed interval delivery (see I.A.2.c.)
d.
Preterm delivery at limits of viability (see I.A.2.d.) Serious discussions about the likely
viability and quality of life of the infants, and desired aggressiveness of resuscitation,
need to be conducted with parents by perinatologist, neonatologist and OB. Existence of
multiples does not make decisions easier to make, but introduces greater complexity.
Threatened or inevitable loss:
a.
Serious or lethal anomaly: parents know ahead that one fetus (or more) will die. Parents
who knew they were at risk of an abnormal fetus may accept the news better than those
who learn of an abnormality through routine prenatal screening. Selective reduction is an
option (see I.A.1.d), but is truly a heartbreaking choice for most parents. Without
selective termination, there is sometimes greater risk of prematurity and possibly
increased risk to healthy co-multiples, depending on the anomaly and zygosity.
b.
Highest-risk multiples: High-order multiples (47% quintuplet mortality in Japanese
study); Twin-to-twin transfusion syndrome (TTTS occurs in 15% of monochorionic
pregnancies. Mortality 40-50% if severe TTTS diagnosed before 25 weeks and treated
with laser or serial amnios); Twin-reversed arterial perfusion (TRAP or acardiac twinning
in 1% of MZ twins: mortality 13% with intervention, 50% without); monoamniotic twins
(1% of MZ twins: mortality 28-60%); conjoined twins (0.4% of twins: over 50%
mortality, many are stillborn and may require C-section delivery).
Neonatal and infant mortality
a.
Anomaly: Risk of death from anomaly in twins is about twice that of singletons.
b.
Prematurity (before 37 weeks): 50% of twins are born prematurely, and 90-100% of
higher order multiples are premature. Complications related to prematurity and low birth
weight are the greatest contributor to excess infant mortality among multiples. Multiple-
MOURNING MULTIPLIED: ASSISTING FAMILIES WITH PRENATAL OR
INFANT LOSS IN MULTIFETAL PREGNANCIES
ELIZABETH A. PECTOR, M.D.
SEPTEMBER, 2000
3
birth infants of a given birth weight may have some survival advantage relative to
singletons of the same birth weight.
c.
SIDS: A twin is about twice as likely as a singleton to suffer from SIDS. A twin survivor
whose twin died of SIDS is about 8 times more likely to suffer a SIDS death, but the
absolute risk is still low (<1%): in only 7 out of 767 sets of twins with at least 1 SIDS
death did both die. According to Dr. Elizabeth Bryan, risk for the survivor may be
highest in the first month after the co-multiple's SIDS death. Cardiorespiratory
monitoring, hospitalization for observation, or outpatient medical evaluations of survivor
may be recommended, causing parental anxiety. Simultaneous death of both twins on the
same day is extremely rare. Environmental causes should be investigated, but foul play
should not be automatically assumed.
d.
Child abuse or neglect is an increased risk in families with preemies or multiple births,
especially if one child is disabled.
e.
Accidental death: Multiple-birth status was one factor increasing risk of accidental infant
death in a French study.
B. Grief course and intensity: influencing factors
1.
2.
Loss of unique parenting opportunity.
a.
Loss of celebrity and challenge: Parents who adjust to the diagnosis of multiples and
begin preparing for 2 or more children often feel specially blessed or chosen to have
multiples. When loss occurs (either partial or total), these parents feel "unchosen" or
unworthy. With total loss after fertility treatment, some parents lose their "instant family"
and sometimes their last chance at any biological children. If a sole survivor remains,
parents lose any visible sign that they are parents of multiples. Other parents,
overwhelmed at the prospect of raising 2, 3 or more children, may be relieved at a partial
loss, especially early in pregnancy.
b.
Loss of a special group relationship: grief for loss of "my twins/triplets," the unique and
special group that parents expected to raise. Parents worry that surviving children miss
the child who died. This includes concern for those remaining in the womb after a partial
intrauterine demise or a delayed interval delivery. Parents grieve for their children's loss
of a unique sibling relationship and wonder what that relationship would have been like.
c.
Other issues also seen in singleton loss. Grief for infertility, grief for a disabled survivor's
loss of normalcy, grief for loss of a normal pregnancy or delivery experience, bitterness at
medicalization of the pregnancy (sometimes from conception!), stress at hospitalization of
survivors in NICU, anger at caregivers in the event of malpractice, etc.
Total pregnancy loss: spontaneous and following MFPR
a.
Grief for loss of all multiples may be more intense than with loss of a singleton child, and
may last longer (on average 6 months beyond singleton grief duration). Parents who
suffer loss of the entire pregnancy after infertility treatment (including MFPR if it was
performed) may have greater depression and significant loss of self-esteem.
MOURNING MULTIPLIED: ASSISTING FAMILIES WITH PRENATAL OR
INFANT LOSS IN MULTIFETAL PREGNANCIES
ELIZABETH A. PECTOR, M.D.
SEPTEMBER, 2000
4
b.
3.
Following unsuccessful MFPR, most parents would still have made the same choice
again. With selective termination for anomaly, experimental treatment for TTTS,
intrauterine surgery, non-aggressive treatment after delivery at the limits of viability, etc.
that result in total pregnancy loss, parents may later need reassurance of the "rightness" of
their decisions.
Partial pregnancy loss: managing grief and joy simultaneously.
Parents grieve just as intensely for perinatal loss of one multiple as they would if the child was
a singleton. They may find comfort in the survival of one or more children, but will still need
to grieve the loss and should not have the depth of their grief underestimated. Parents often
feel both their ability to grieve and their ability to bond to survivors are compromised due to
the need to confront both simultaneously. They need assistance in experiencing and
memorializing their multiples together. Grief in the most complicated circumstances may be
delayed for years; but adequate mementos must be obtained, and appropriate resources given,
at the time loss occurs.
a.
First trimester: early loss permits more grief work before delivery than later prenatal or
postpartum loss. Added later losses may revive early grief, guilt or doubt re: decisions.
1) Due to the high risk of early partial loss, parents diagnosed early in the first trimester
with a multiple pregnancy should be clearly informed of the potential for loss of at
least one fetus. Most parents would prefer to know of a multiple gestation from the
outset, rather than have it hidden to spare them potential grief in event of loss.
2) Occasional parents who were greatly desirous of twins may find the spontaneous
demise of one fetus a great disappointment, and still have grief issues years later.
Parents who lost one triplet early in pregnancy and later lose one of the remaining
two have sometimes named the early-demised fetus one or more years later.
3) After MFPR, acute grief reactions average about a month, with some recurrent
thoughts at the time of delivery of what the reduced fetus's sex or appearance would
have been. Many of these parents express relief at only having two children to raise,
once they see the work involved with the two. 1/4 to 1/3 of parents may have
anniversary grief reactions or occasional thoughts of grief up to about 2 years after
MFPR. Parents who already have children, are younger, or (questionably) more
religious may be more likely to have a longer grief course after MFPR.
b.
Second and third trimester loss
1) Going longer after intrauterine demise or termination
a). Emotional reactions can be quite variable. They often include a sense of
isolation, concern about the potential adverse effects of the loss and/or grief on
the health of the mother and remaining child(ren), worry about the appearance
of the fetus at delivery and whether or not the parents should see the child.
b). Some parents are "stuck in grief," unable to think rationally or develop a birth
plan for delivery. Others delay grief in order to focus on the living child and
MOURNING MULTIPLIED: ASSISTING FAMILIES WITH PRENATAL OR
INFANT LOSS IN MULTIFETAL PREGNANCIES
ELIZABETH A. PECTOR, M.D.
SEPTEMBER, 2000
5
hope for the best possible outcome. Those who are able to plan ahead for birth,
including viewing and disposition of the dead child's body, spiritual and
memorial concerns, may find the opportunity to plan helps them regain some
sense of control.
c). Parents appreciate relevant medical information, close monitoring of surviving
infants, and instruction on actions they can take that might be able to detect or
monitor for problems (e.g. movement counts, monitoring for preterm labor, etc.)
Some might want to see the deceased baby on ultrasound, or to have it
measured--some have expressed wondering "how much was left."
d). They also need specific information about what the deceased child will look like
at delivery, and guidance prenatally and after delivery as to whether they should
see the deceased fetus (highly recommended, but undue coercion should be
avoided.)
e). Mementos (ultrasounds, monitor strips, etc.) and photos should be obtained after
delivery. Parents need creative help to understand and memorialize the reality of
"my twins/multiples" when one or more multiples dies during the pregnancy, or
when multiples are delivered at different times. Photos of the parents holding
both children (e.g. wrapped remains of a mid-trimester demised fetus plus
survivors), deceased child next to surviving child (depending on parental wishes
and practicality), and sketches created months or years later can help parents
appreciate the idea of their multiples as an intact set. Photos of the demised or
anomalous fetus should ALWAYS be obtained, and kept in a safe place until
parents claim them. An extra set to keep with the medical record is also a good
idea; some parents have been known to destroy photos in their grief.
2). Knowing ahead of inevitable death due to anomaly
a). Death may occur during pregnancy or shortly after. Consultation with
perinatologists, neonatologists, ethicists, and outside institutions may be
necessary to ensure adequate knowledge of medical options and humane
handling of the situation. Chronic anxiety, denial or unrealistic optimism, and
difficulty bonding to one or all children may be seen during pregnancy. Those
parents who are able to plan, as mentioned in 3.b.1)b) above, may regain a sense
of control. Journaling, writing to the baby who will die, creating a memory book
or scrapbook, researching the condition, all help different parents cope.
b). Death may occur a prolonged period of time after birth, and parents may need to
be adequately prepared for postnatal survival of a child who still ultimately won't
survive. Adequate neonatology and specialty consultation after delivery,
exploration of the availability of hospice for support, arranging home care,
respite care and psychological support and counseling for the families, with
social service involvement to help work out insurance and logistical needs, can
aid in practical coping.
4.
Complicating factors that influence grief course and coping
MOURNING MULTIPLIED: ASSISTING FAMILIES WITH PRENATAL OR
INFANT LOSS IN MULTIFETAL PREGNANCIES
ELIZABETH A. PECTOR, M.D.
SEPTEMBER, 2000
6
a.
Multiplicity of problems
1) Medical complications in both mother and child(ren): may be present at different
times throughout pregnancy or the neonatal period. Logistics, and the ability of father
or support person(s) to cope with multifactorial stress over weeks or months, are
particularly challenging. Maximizing practical, medical, psychosocial and spiritual
support for the entire family are key.
2) Two or more losses may occur from the same pregnancy, especially at different times.
There may be disappointment in inability to bury or cremate these children together,
or inability to experience the multiples together as a set. Encouraging flexibility with
the morgue, funeral home or crematorium, may allow some parents with losses
occurring at different times to have their children together.
3) Special needs surviving multiples (prematurity, developmental delay). Special needs
may be evident at birth, or may not arise for several years (especially learning
disabilities during school years in surviving VLBW multiples). Early intervention
screenings and therapy, preschool evaluations or special education assessments which
review prenatal and early life history resurrect the loss scenario (as well as involving
the well-known grief for loss of a normal child that has been documented for parents
with any special needs child).
4) Parents who have two or more survivors from a multifetal pregnancy, especially if
they were preemies or have special needs, may be very preoccupied by the work
involved in their care. Grief for the child(ren) lost from the pregnancy may thus be
deferred until life gets a bit more manageable, often 2-3 years later.
b.
Unique triggers of grief: encounters with intact sets of multiples or parents expecting
multiples (including at the doctor's office when going longer after intrauterine demise of
one or more fetuses). Double strollers, matching outfits purchased in advance for the
children, empty cribs at home, etc. Questions addressed to parents of two surviving
triplets or three surviving quads, e.g. "are your children twins/triplets?" brings up
dilemmas that parents must face--families decide to answer these differently but
awareness in advance can help smooth the way for these inevitable public encounters.
c.
Influence of zygosity, sex, infertility treatment, other issues
1) Zygosity: Zygosity should always be determined after delivery. (1/3 of identical twins
have two placentas, so same-sex dichorionic twins need tissue or blood markers
analyzed to confirm zygosity. Higher order multiples are sometimes mixed monoand dizygous, and infertility treatment results in a higher than expected incidence of
monozygous multiples in addition to the expected dizygous ones.) Parents of
monozygous (identical) multiples may find it both a blessing and distressing to know
that the child who died would have looked just like their survivor. Parents of
dizygous (fraternal) multiples eternally wonder about the appearance their deceased
children would have had. Parents in both groups wonder what their deceased
children's personalities and the relationships between the children might have been
like. (This is also true when there are no survivors). Knowledge of zygosity helps
parents better conceptualize the lost relationship, and also yields information on the
MOURNING MULTIPLIED: ASSISTING FAMILIES WITH PRENATAL OR
INFANT LOSS IN MULTIFETAL PREGNANCIES
ELIZABETH A. PECTOR, M.D.
SEPTEMBER, 2000
7
risk of multiples in a subsequent pregnancy. Parents with dizygous multiples have
about twice the average population risk of multiples in a subsequent pregnancy, or
approximately 2-3%.
2) Sex: If all children of a preferred sex have died in the pregnancy, parents may have
prolonged regrets about not getting to raise a son/daughter, and this disappointment
may be sensed by surviving multiple(s). Careful counseling should be given to
parents to avoid translating their disappointment into unwarranted disapproval and
criticism of the survivors. Siblings may be angry that a preferred sex sibling died.
3) Infertility treatment: Parents who suffer a total pregnancy loss after fertility treatment,
even early in pregnancy, may suffer significant depression or loss of self-esteem.
Planning subsequent pregnancies may be difficult, as age, medical or financial
realities may prevent pursuing a subsequent pregnancy, or there may be a prolonged
delay before conception occurs. Total loss of an "instant family," or having only one
survivor from a set of 3-4 conceived after years of infertility treatment, may leave
some parents deeply disappointed. Parents who conceive multiples by IVF, as
opposed to fertility drugs or spontaneously, have greater stress and less selfconfidence in their parenting skills even when their children are all alive and healthy.
Ongoing reassurance about their parenting abilities may be needed.
4) Number of children remaining: Clarify with parents how they want their children to
be called. Some parents are very touchy about referring to 2 surviving triplets as
"twins." The children themselves often decide when they're older what they want to
be called. Individual names are always appreciated!
5) Multiples in family: parents themselves, siblings, other relatives.
6) Legal issues: Parents may be torn about whether to pursue a malpractice suit against
their medical caregivers. Civil lawsuits are a measurable source of stress for patients
in counseling for other issues. Parents who pursue legal action are often frustrated by
legal opinions on the "worth" of their child's death, delays, and the unpredictability of
justice. Some of the least resolved grief occurs in these parents, their loss is everpresent until the resolution of the case. Parents may need to express indecision or
frustrations in a support group setting, since no specific avenues for support exist for
bereaved parents pursuing malpractice actions.
C. Effects of loss on parental interactions with survivors and siblings
1.
Confusion and flashbacks
a.
Confusing the living child with the deceased one, especially if the one who died was not
viewed. "Seeing" the dead child in the living one, feeling one had two separate deliveries,
one dead and one living, instead of a set of twins, or feeling like half a baby lived & half a
baby died, have been described.
b.
Flashbacks of the children who died, or the circumstances of loss, can occur in the first
several months, or years later with post-traumatic stress syndrome.
MOURNING MULTIPLIED: ASSISTING FAMILIES WITH PRENATAL OR
INFANT LOSS IN MULTIFETAL PREGNANCIES
ELIZABETH A. PECTOR, M.D.
SEPTEMBER, 2000
8
2.
Difficulties in bonding:
a.
One extreme: overprotection, hypervigilance, severe anxiety for living childrens' health.
b.
The other extreme: resisting attachment because the survivor(s) could also die, resentment
of the survivor, neglect, idealization of the deceased child(ren), excessive disappointment
in not being able to raise the intact set of multiples.
3.
Difficulties in later parenting: "spoiling" or reluctance to discipline.
4.
Parenting subsequent intact sets of multiples together with survivors of previous loss is tricky.
Emphasize each child's uniqueness and their shared special status without making the survivor
feel left out.
D. Effects of loss on survivors: Study by Dr. David Hay is ongoing in Australia to scientifically
address this. Anecdotal reports are detailed in the protocol, and by Elizabeth Bryan, Joan
Woodward, Betty Jean Case, and Raymond Brandt.
E. Effects on siblings: during pregnancy, 2 older siblings may each choose one twin to help care for
after birth. Concept of family unit must be reorganized and siblings may differ in grief/guilt.
II. EFFECTIVE CAREGIVER RESPONSE
A.
What to say and do in the event of actual or threatened loss
Approach should be individualized, nonjudgmental. Address each individual child and the concept
of the multiples as a unit. Ask parents what they are feeling, what they want to call their children
(names, surviving twins/triplets etc.), and what will help. Actively offer help and anticipate needs-parents may readily accept help, but may not feel comfortable asking, and some are so shellshocked it never occurs to them that hospitals and outside agencies have resources that can help
them through a crisis.
1.
Prenatal support and psychological management
a.
Prenatal classes specialized for all parents of multiples: introduce complications or
mortality as rare, but knowledge of them will help affected parents know what to ask their
caregivers, and gives them readily accessible resources for information and support.
b.
Going longer after a partial loss, or knowing ahead of death: communication with all
medical personnel and technicians necessary. Try to avoid hospitalization with another
woman expecting multiples as a roommate, OB appointments at same time as other
parents of multiples.
2.
Delivery: Refer to protocol. Pay attention to confidentiality issues, publicity/media.
a. Birth plans: address whether hospital staff should know about MFPR, termination.
b. Conduct of delivery
c. Postpartum viewing, photography, disposition or arrangements for body
3.
NICU: optimize communication, information, parental involvement, support, discharge help.
MOURNING MULTIPLIED: ASSISTING FAMILIES WITH PRENATAL OR
INFANT LOSS IN MULTIFETAL PREGNANCIES
ELIZABETH A. PECTOR, M.D.
SEPTEMBER, 2000
9
a.
Survivors after a prenatal or intrapartum loss (see protocol for practical points on hospital
management)
1). How to approach grief: Parents are usually receptive to general questions about how
they are coping. Some parents compartmentalize grief and see their time with their
living child in the hospital as time to dedicate to that child. The parent's mention of a
child who died should be seen as an indication of their readiness to talk about that
child and the loss. Many parents deeply need to talk! Others hold back the flood of
emotions until a later time when they can better deal with it. Make sure all caregivers
realize a child is a surviving multiple (especially in tertiary hospitals).
2). Bonding can be affected as previously discussed (over- and under-attachment).
Ensuring support for the NICU experience (which is traumatic in itself, even in the
best of circumstances), raising the possibility of difficulty bonding with reassurance
that this is normal and offering peer support and/or counseling may be helpful.
b.
Death of one or more multiples in NICU: parent and survivor concerns, funeral planning,
discharge planning
1). Parents want to be present for their child's death and want prompt notification if a
child is going downhill. Some (most) want to be present during resuscitation
attempts. Allow private time & photos with living co-multiples if possible. Notify
parents in person if death occurred when they were not present.
2). Some parents want to hurry through funeral arrangements and don't even want to
consider the possibility of another death (the majority of parents surveyed). Others
wish to hold off on burial/cremation/memorial until fate of survivors is more certain.
Parents may need much support while making final arrangements for one or more
children when others are in unstable condition.
3). Many parents have felt too distraught to plan arrangements and defer this to family
members or friends. Be sure these proxies are fully informed of all options.
4). Discharge planning may be difficult if parents are overwhelmed after death of other
children, or with an extremely high-needs child being discharged home with hospice
care. Some parents refuse to believe a surviving will actually live to come home after
his/her siblings have died, and delay planning till last minute.
5). Parents fully confront the loss when the last survivor comes home. The typical fear
and doubt of their ability to cope with a NICU graduate are also present. Social
service and bereavement support can ensure the family's practical, medical and
emotional needs are met.
c.
Discontinuing life support: multiples make it more complicated. Existence of survivors
doesn't decrease the tragedy of making such decisions for one child, and it is truly
heartbreaking to face this decision 2, 3 or more times over weeks to months.
MOURNING MULTIPLIED: ASSISTING FAMILIES WITH PRENATAL OR
INFANT LOSS IN MULTIFETAL PREGNANCIES
ELIZABETH A. PECTOR, M.D.
SEPTEMBER, 2000
10
4.
Infant admission e.g. suspected SIDS, sepsis, accident, other. Be conversant with the unique
aspects of multiple birth for these families, bend rules to allow co-multiples' presence at
hospital, facilitate continued breastfeeding of healthier child. Multidisciplinary assistance.
B. Creating memories and mementos: recognize both the individual child and the multiples as a set
(see protocol). Time with each child individually and with the set together, individual and group
photos, and tangible evidence of the set of multiples together will help parents process both the loss of
"child" and the loss of "group relationship."
C. Forming and facilitating multiple birth loss support groups
1.
In-person groups: formal vs. informal (see guidelines)
2.
Internet and mail peer support: cautions and limitations
a.
Medical information may not always be accurate or up-to-date, should be confirmed with
a medical professional before being acted upon.
b.
Other grieving parents can say hurtful, judgmental things out of envy or anger. The best
groups will be moderated, with the moderator emphasizing that respect for different
situations, values, decisions and styles of grieving must be maintained.
D. Managing professional grief
1.
Try to reduce likelihood of professional burnout by self-monitoring for telltale signs, and by
caring for own physical, psychological, professional well-being.
2.
Informal and formal de-briefing and support discussions with colleagues are helpful. Medical
and psychological review of difficult situations can help improve future quality of care.
3.
Attending funerals and talking with families of deceased children, sharing memories and grief,
is helpful. Caregivers can give professional guidance while expressing their own sorrow.
Letters sharing caregivers' sorrow and memories of the children are cherished. Other ideas:
"signature bears" signed by all who cared for a child who died, with matching bears for
survivors. Professionals' sharing of their own loss experience has been greatly appreciated.
4.
It is very difficult for medical professionals affected by loss to work in settings where they're
exposed to multiple-birth families. Supervisor's open attitude, and trying to avoid bereaved
professional's confrontation with loss scenarios extremely similar to their own, may help.
E. Subsequent pregnancy: some want multiples and others are deeply afraid of them.
1.
With singleton: possible disappointment. Fear is considerable despite lower risk.
2.
With multiples: another set of multiples doesn't make up for the previous loss, but rather may
make parents more keenly aware of what they missed with their loss.
3.
Infertility: inability to conceive again, or difficulty promptly conceiving.
MOURNING MULTIPLIED: ASSISTING FAMILIES WITH PRENATAL OR
INFANT LOSS IN MULTIFETAL PREGNANCIES
ELIZABETH A. PECTOR, M.D.
SEPTEMBER, 2000
11
III. SUPPORT AND INFORMATION RESOURCES
A. Organizations: local, national, international
B. Printed materials (books and pamphlets)
1. Parent-oriented
2. Professional-oriented
3. Survivor/sibling oriented
C. Internet web sites and e-mail support lists